Nursing homes for all: why aged care needs to reflect multicultural Australia

Do nursing home staff know and respect your cultural background or language? Here’s why that’s important.
from www.shutterstock.com

Helen Rawson, Deakin University

This week, the aged care royal commission looks at diversity in aged care, an issue becoming increasingly relevant to both residents and the staff who care for them.

Diversity includes gender, sexual orientation, religion and social background. The issue is important because if we aim to offer older people and families choice and control in aged care, we must meet the diverse needs of all older people.




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Australia’s rich diversity is reflected in its older population. In 2016, more than one-third (37%) of Australians aged 65 and over were born overseas and one-fifth (20%) were born in a non-English speaking country.

These figures have increased continually since 1981, when one-quarter (25%) of older people were born overseas.

Diversity within diversity: culture and language

Culture is important for every person. It indicates a way of life based on customs, beliefs, language and experiences shared with family and a wider community or group.

According to the Federation of Ethnic Communities’ Councils of Australia, many people from culturally and linguistically diverse backgrounds don’t want to move to a nursing home. This is for a number of reasons.

They may not want to be away from family and community, they might speak a different language to staff and other residents, and homes may not understand or meet their individual cultural needs.

Our previous research showed living in an aged care facility could make some older people feel disempowered. Language and cultural diversity can further add to that disempowerment. For the older people we studied, communication, companionship, and staff knowing them as individuals was very important.




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Language is particularly important for older people’s physical health and well-being. Many culturally and linguistically diverse older people say they speak English well. However, with age and cognitive decline, they may lose the ability to communicate in English and revert to their first language.

And as more than half of nursing home residents have dementia, with the associated deterioration in language and cognition, communication can be more difficult still.

Appreciating someone’s cultural background can help residents make friends.
from www.shutterstock.com

Being aware of their peer’s culture and language can help residents build relationships with each other, family and staff.

Different cultural expectations and language barriers can create misunderstanding and resident and family dissatisfaction. This can affect residents’ care and quality of life.




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How can we support appropriate care?

Aged care needs to be responsive, inclusive and sensitive to a person’s culture, language and spiritual needs. So it is important for nursing homes to understand those needs.

For those who are culturally diverse, government-funded support and culturally specific nursing homes can help. These include services for Greek, Italian, Dutch, Jewish and Chinese older people, reflecting post-war migration.

However, organisations like these cannot meet everyone’s needs. So all residents need care that respects cultural and social differences, works with older people and family, and supports choice.




Read more:
What do Aboriginal Australians want from their aged care system? Community connection is number one


What might appropriate care look like?

Staff need ongoing cultural competence training to deliver appropriate and supportive care.

Staff cannot know everything about the many cultural and language groups in Australia. They can, however, practise in way that is culturally appropriate, by:

  • never making assumptions about someone’s culture, heritage, language or individual needs. No two people are the same, even if they are from the same culture and language background

  • talking to the resident with an interpreter, if needed

  • learning what is important to the resident. For example, staff could ask family members or close friends to bring in photos or mementos important to the older person

  • talking with family of residents who are unable to communicate in English to make a list of key words or phrases for staff. This could include how to say “hello”, or how to ask “are you comfortable?”, or “are you in pain?”

  • making sure the older person isn’t isolated in the nursing home. This could involve working with the local community of the person’s culture, and asking for volunteers who could come and visit the older person.

Family members can be a huge help to staff in understanding the resident’s language, culture and preferences.
Nadya Chetah/Shutterstock

Appropriate and respectful aged care is a human right

Culture and language diversity in aged care is a fundamental human right. Embedding diversity in all aspects of aged care is also recognised by government, and in how the quality of aged care is assessed.

New aged care quality standards, which came into effect this July, include being treated with dignity and respect, with identity, culture and diversity valued, and all residents able to make informed choices about the care and services they receive.




Read more:
Nearly 1 in 4 of us aren’t native English speakers. In a health-care setting, interpreters are essential


If the outcomes of this royal commission are to benefit Australians now and especially in the future, older people from culturally and linguistically diverse backgrounds must not be an afterthought in the aged care discussion. They must be part of the planning.The Conversation

Helen Rawson, Senior Research Fellow, Deakin University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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World’s largest dementia study reveals 2/3 of people think dementia is a normal part of ageing

News Release
September 2019| Alzheimer’s Disease International (ADI): World’s largest dementia study reveals two thirds of people think dementia is a normal part of ageing, rather than a medical condition

95 per cent of participants think they could develop dementia in their lifetime – a survey of 70,000 people across 155 countries reveals

2 in 3 people still think that dementia is a normal part of ageing
62 per cent of healthcare practitioners still think it is a normal part of ageing
Over 50% of healthcare practitioners agree that their own colleagues ignore people living with dementia and 33% of people thought that if they had dementia, they would not be listened to by health professionals
1 in 5 people attribute dementia to bad luck, almost 10 per cent to God’s will and 2 per cent to witchcraft
Every 3 seconds someone in the world develops dementia
London, Friday 20 September – Results from the world’s largest survey on attitudes to dementia reveals a startling lack of global knowledge around dementia, with two thirds of people still thinking the disease is a normal part of ageing rather than a neurodegenerative disorder.

Alzheimer’s Disease International (ADI), the international federation of 100 Alzheimer associations and federations around the world, ahead of World Alzheimer’s Day tomorrow (21 September) with the release of the World Alzheimer Report 2019: Attitudes to dementia. The report reveals the results of the largest attitudes to dementia survey ever undertaken, with responses from almost 70,000 people across 155 countries and territories. Analysis of the study was carried out by the London School of Economics and Political Science (LSE).

The report reveals that stigma around dementia is preventing people from seeking the information, advice, support and medical help that could dramatically improve their length and quality of life for what is one of the world’s fastest growing causes of death globally. The number of people living with dementia is forecast to more than triple, from over 50 million currently, to 152 million by 2050.

“Stigma is the single biggest barrier limiting people around the world from dramatically improving how they live with dementia,” says ADI’s Chief Executive Paola Barbarino. “The consequences of stigma are therefore incredibly important to understand. At the individual level, stigma can undermine life goals and reduce participation in meaningful life activities as well as lower levels of well-being and quality of life. At the societal level, structural stigma and discrimination can influence levels of funding allocated to care and support.”

The report reveals astonishing attitudes towards dementia. Survey respondents included people living with dementia, carers, healthcare practitioners and the general public. A major cause for concern from the report, is the number of people across the world who think that dementia is a natural part of the ageing process.

Forty-eight per cent of respondents believe a person with dementia’s memory will never improve, even with medical support, while one in four people think there is nothing we can do to prevent dementia. These are major barriers to people accessing help, advice and support.

The report reveals that dementia stigma is similar to stigma often associated with mental health, focussed on age and is accentuated by a lack of available medical treatments. In reality, many forms of support exist around the world. Talking and planning can help people to live well with dementia for as long as possible.

“Currently, there is very little information about how stigma manifests in relation to people with dementia and how this may vary around the world,” Barbarino continues. “This detailed survey and report now give us a baseline of information for dementia-related stigma at a global, regional and national level. We’re hopeful these findings can kick start positive reform and change globally.”

The report finds that over 50% of healthcare practitioners agree that their own colleagues ignore people living with dementia and 33% of people thought that if they had dementia, they would not be listened to by health professionals.

Interestingly, 95 per cent of participants think they could develop dementia in their lifetime and over two thirds of people (69.3 per cent) would take a genetic profiling test to learn whether they are at risk of dementia (even though there is currently no disease-modifying treatment). However, two thirds of people still think dementia is a natural part of ageing. The fear of developing dementia is high globally, but the true understanding of the disease is low. This is worrying, as Alzheimer’s disease and other dementias are the 5th leading cause of death globally.

Sara Evans-Lacko, Associate Professorial Research Fellow at the Care Policy and Evaluation Centre, LSE, said: “Whereas most stigma studies look at public knowledge and or attitudes, this is the first study to look at the behavioural element – the data collected highlight actual experiences of people. For LSE it has been enriching to be part of the first attempt to create a baseline on dementia attitudes. We are delighted to have been able to bring our rigour and analytical expertise to the table and are conscious of the tremendous importance of this exercise at a global level.”

ADI launched its global campaign ‘Let’s Talk About Dementia’, on 1 September 2019 to mark the beginning of the month of awareness. The campaign is based on the understanding that talking about dementia helps tackle the stigma, normalises language and encourages people to find out more, seek help, advice and support.

Dementia blogger and journalist Pippa Kelly says it is vitally important that as a society we have more conversations about dementia to create better understanding. “Stigma stems from fear. Fear breeds silence, which in turn perpetuates ignorance and misunderstanding,” Kelly says.

Every 3 seconds someone in the world develops dementia but most people with dementia do not receive a diagnosis or support. The annual cost of dementia is over US$ 1 trillion – a figure set to double by 2030. Deaths due to dementias more than doubled between 2000 and 2016, making it the 5th leading cause of global deaths in 2016 compared to 14th in 2000.

The “Let’s Talk About Dementia” campaign simply aims to stimulate a conversation about dementia, the warning signs, risk reduction, who to speak to and where to go for advice. Lack of knowledge about dementia leads to inaccurate assumptions about its effects on the person and their family, as well as negative stereotypes about how a person with dementia will behave, Barbarino says. “Evidence suggests that when people living with dementia and their families are well prepared and supported, initial feelings of shock, anger and grief are balanced by a sense of reassurance and empowerment, so the campaign’s focus is on increasing conversations around dementia globally.”

The full World Alzheimer’s Report 2019: Attitudes to dementia, is available to read here.

For story ideas, interview requests and more information, please contact:

Alzheimer’s Disease International

Annabelle Dick
Mana Communications
T: +64 (0)27 819 7011
E: ad@manacommunications.com

Annie Bliss
Alzheimer’s Disease International
T: +44 20 7981 0886
E: a.bliss@alz.co.uk

About World Alzheimer’s Month

World Alzheimer’s Month is the international campaign every September to raise awareness and challenge the stigma that surrounds dementia. September 2019 will mark the 8th World Alzheimer’s Month. The campaign was launched in 2012: World Alzheimer’s Day is on 21 September each year. For more information, please visit: https://www.alz.co.uk/world-alzheimers-month

About Alzheimer’s Disease International (ADI)

ADI is the international federation of 100 Alzheimer associations and federations around the world, in official relations with the World Health Organization. ADI’s vision is prevention, care and inclusion today, and cure tomorrow. ADI believes that the key to winning the fight against dementia lies in a unique combination of global solutions and local knowledge. ADI works locally, by empowering Alzheimer associations to promote and offer care and support for persons with dementia and their care partners, while working globally to focus attention on dementia and campaign for policy change. For more information, please visit http://www.alz.co.uk.

Truly smart homes could help dementia patients live independently

PixOfPop/Shutterstock

Dorothy Monekosso, Leeds Beckett University

You might already have what’s often called a “smart home”, with your lights or music connected to voice-controlled technology such as Alexa or Siri. But when researchers talk about smart homes, we usually mean technologies that use artificial intelligence to learn your habits and automatically adjust your home in response to them. Perhaps the most obvious example of this are thermostats that learn when you are likely to be home and what temperature you prefer, and adjust themselves accordingly without you needing to change the settings.

My colleagues and I are interested in how this kind of true smart home technology could help people with dementia. We hope it could learn to recognise the different domestic activities a dementia sufferer carries out throughout the day and help them with each one. This could even lead up to the introduction of household robots to automatically assist with chores.

The growing number of people with dementia is encouraging care providers to look to technology as a way of supporting human carers and improving patients’ quality of life. In particular, we want to use technology to help people with dementia live more independently for as long as possible.

Dementia affects people’s cognitive abilities (things like perception, learning, memory and problem-solving skills). There are many ways that smart home technology can help with this. It can improve safety by automatically closing doors if they are left open or turning off cookers if they are left unattended. Bed and chair sensors or wearable devices can detect how well someone is sleeping or if they have been inactive for an unusual amount of time.

Lights, TVs and phones can be controlled by voice-activated technology or a pictorial interface for people with memory problems. Appliances such as kettles, fridges and washing machines can be controlled remotely.

People with dementia can also become disoriented, wander and get lost. Sophisticated monitoring systems using radiowaves inside and GPS outside can track people’s movements and raise an alert if they travel outside a certain area.

All of the data from these devices could be fed in to complex artificial intelligence that would automatically learn the typical things people do in the house. This is the classic AI problem of pattern matching (looking for and learning patterns from lots of data). To start with, the computer would build a coarse model of the inhabitants’ daily routines and would then be able to detect when something unusual is happening, such as not getting up or eating at the usual time.

A finer model could then represent the steps in a particular activity such as washing hands or making a cup of tea. Monitoring what the person is doing step by step means that, if they forget halfway through, the system can remind them and help them continue.

The more general model of the daily routine could use innocuous sensors such as those in beds or doors. But for the software to have a more detailed understanding of what is happening in the house you would need cameras and video processing that would be able to detect specific actions such as someone falling over. The downside to these improved models is a loss of privacy.

Future smart homes could include robot carers.
Miriam Doerr Martin Frommherz/Shutterstock

The smart home of the future could also come equipped with a humanoid robot to help with chores. Research in this area is moving at a steady, albeit slow, pace, with Japan taking the lead with nurse robots.

The biggest challenge with robots in the home or care home is that of operating in an unstructured environment. Factory robots can operate with speed and precision because they perform specific, pre-programmed tasks in a purpose-designed space. But the average home is less structured and changes frequently as furniture, objects and people move around. This is a key problem which researchers are investigating using artificial intelligence techniques, such as capturing data from images (computer vision).

Robots don’t just have the potential to help with physical labour either. While most smart home technologies focus on mobility, strength and other physical characteristics, emotional well-being is equally important. A good example is the PARO robot, which looks like a cute toy seal but is designed to provide therapeutic emotional support and comfort.

Understanding interaction

The real smartness in all this technology comes from automatically discovering how the person interacts with their environment in order to provide support at the right moment. If we just built technology to do everything for people then it would actually reduced their independence.

For example, emotion-recognition software could judge someone’s feelings from their expression could adjust the house or suggest activities in response, for example by changing the lighting or encouraging the patient to take some exercise. As the inhabitant’s physical and cognitive decline increases, the smart house would adapt to provide more appropriate support.

There are still many challenges to overcome, from improving the reliability and robustness of sensors, to preventing annoying or disturbing alarms, to making sure the technology is safe from cybercriminals. And for all the technology, there will always be a need for a human in the loop. The technology is intended to complement human carers and must be adapted to individual users. But the potential is there for genuine smart homes to help people with dementia live richer, fuller and hopefully longer lives.The Conversation

Dorothy Monekosso, Professor of Computer Science, Leeds Beckett University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Using technology to support caregivers of older people with dementia

Technology can be used to support the caregivers of people living with dementia, however, developers and designers need to take caregiver needs into consideration.
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Janet Fast, University of Alberta

In June, the government of Canada released its long-awaited Dementia Strategy for Canada: Together We Aspire.

As a family caregiving researcher for more than two decades and a former family caregiver to my father, who had dementia, the strategy was welcome news. But my own research and personal experience suggest that we’re falling short of the aspiration to be “a Canada in which all people living with dementia and caregivers are valued and supported.”

I agree, perhaps selfishly, that research and innovation are essential for effective implementation of the dementia strategy. AGE-WELL NCE, Canada’s technology and aging network, engages older people, caregivers, product developers and designers in the development of technologies that can make their lives better.

I co-lead the AGE-WELL research project that is responsible for adding to what we already know about caregivers’ needs, developing new technologies to meet those needs and advocating for new policies and practices that will reduce the negative consequences of care. My team’s work shows clearly that caregiving takes a toll on the nearly half million Canadians caring for a family member or friend with dementia. Other caregivers also pay a price: poorer physical and mental health, social isolation and loneliness, financial hardship and insecurity. But that price is steeper when caring for someone with dementia.

Caring time and labour

Caregiving is time-consuming for all caregivers, averaging nine-and-a-half hours per week. It is more time-intensive for dementia caregivers, who provide more than 13 hours per week on average. Collectively, those half million dementia caregivers spent 342 million hours on care tasks in 2012, the equivalent of more than 171,000 full-time employees.

Care also is a different experience for men and women and these differences are more pronounced among dementia caregivers than others. Women dementia caregivers are more likely than men to experience negative health, social, employment and financial outcomes.

Layer on persistent gender wage discrimination and ineffective financial compensation strategies and it’s little wonder that a quarter of female dementia carers experienced care-related financial hardship. These caregivers often modify spending or defer savings to cover care-related expenses. This was a problem for only one in seven of their male counterparts.

Technological support

Existing technologies that can make caregivers’ jobs easier include GPS-enabled tracking and monitoring systems, smartphone and tablet applications, emergency alert systems, tele-health services, networking platforms and many others. But technology adoption and retention is poor, with 70 to 90 per cent of innovations failing.

An understanding caregivers’ needs can help technology developers in the design of apps and products that meet those needs.
Shutterstock

Sometimes this is because available technologies don’t meet caregiver needs very well. Many product designers and developers create the technology for the sake of it, without knowing whether caregivers want it or are prepared to use it. As a result, technology can have both negative and positive impacts on caregivers.

Traditional problem‐focused approaches to technology design can limit discussions to performing caregiving tasks, and fail to capture the complexity of “being in care relationships.” Product developers and designers need to understand caregivers’ complicated lives and unique needs if they’re to develop successful strategies for developing, promoting and delivering technologies to support family caregivers effectively.

Disrupting how we develop technologies by integrating caregivers into design practice so that it’s their experiences and expertise that drive the process is more likely to lead to products and services that solve their real-life problems, improve their well-being and, ultimately, succeed in the marketplace.

Supporting caregivers

While there are technologies and services that can help support caregivers, it’s usually up to caregivers to find them. Navigating a fragmented system of health and social supports is challenging, time-consuming, frustrating and often futile.

One of our team’s projects is addressing this challenge by applying a new type of artificial intelligence called cognitive computing. We have created an online tool that connects family caregivers to products that will support them and their family member or friend with dementia.

It will be far more specific and powerful than the usual search engines, allowing family carers to describe in plain language the problem they want to solve.

CARE-RATE uses cognitive computing to support caregivers looking for information and support.

A second project uses a co-creation process that taps caregivers’ experiences to develop a web portal that provides ongoing follow-up and training in the use of mobility aids such as canes, walkers, wheelchairs or scooters, when and where they need it.

A third project is asking caregivers to tell [researchers] about their preferences and priorities for technological solutions to some of their biggest challenges.

As our population grows older, disability rates increase and pressure on our health and continuing care sectors also grows. We have to understand, recognize and support family caregivers and their valuable work if we’re to meet the challenge.

Of course, technology alone is not enough to sustain the largely unpaid work of family caregivers. According to University of Birmingham social policy professor Paul Burstow, “getting the balance right between ‘tech’ and ‘touch’ is vital.”

From my perspective:

“We need to recognize the value of family caregivers’ work and their right to ‘have a life[’]; ensure that there are adequate, accessible and affordable services for care receivers and caregivers; organize workplaces and labour policy so that caregivers can keep earning a living alongside their care work as long as possible; and when caregiving still results in financial hardship for some, we need to be ready with anti-poverty measures.”

[ Expertise in your inbox. Sign up for The Conversation’s newsletter and get a digest of academic takes on today’s news, every day. ]The Conversation

Janet Fast, Professor and Co-Director, Research on Aging, Policies and Practice, University of Alberta

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Dementia: Why we find it difficult to stay awake in the day and sleep at night?

Study Suggests Tau Tangles, Not Amyloid Plaques, Drive Daytime Napping That Precedes Dementia

Researchers and caregivers have noted that excessive daytime napping can develop long before the memory problems associated with Alzheimer’s disease begin to unfold. Prior studies have considered this excessive daytime napping to be compensation for poor nighttime sleep caused by Alzheimer’s-related disruptions in sleep-promoting brain regions, while others have argued that the sleep problems themselves contribute to the progression of the disease. But now UC San Francisco scientists have provided a striking new biological explanation for this phenomenon, showing instead that Alzheimer’s disease directly attacks brain regions responsible for wakefulness during the day.

two people talk in a lab
Lea Grinberg (right), MD, PhD, the senior study author

The new research demonstrates that these brain regions (including the part of the brain impacted by narcolepsy) are among the first casualties of neurodegeneration in Alzheimer’s disease, and therefore that excessive daytime napping – particularly when it occurs in the absence of significant nighttime sleep problems – could serve as an early warning sign of the disease. In addition, by associating this damage with a protein known as tau, the study adds to evidence that tau contributes more directly to the brain degeneration that drives Alzheimer’s symptoms than the more extensively studied amyloid protein.

“Our work shows definitive evidence that the brain areas promoting wakefulness degenerate due to accumulation of tau – not amyloid protein – from the very earliest stages of the disease,” said study senior author Lea T. Grinberg, MD, PhD, an associate professor of neurology and pathology at the UCSF Memory and Aging Center and a member of the Global Brain Health Institute and UCSF Weill Institute for Neurosciences.

Wakefulness Centers Degenerate in Alzheimer’s Brains

In the new study, published August 12, 2019, in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, lead author Jun Oh, a Grinberg lab research associate, and colleagues precisely measured Alzheimer’s pathology, tau protein levels and neuron numbers in three brain regions involved in promoting wakefuless from 13 deceased Alzheimer’s patients and seven healthy control subjects, which were obtained from the UCSF Neurodegenerative Disease Brain Bank.

Compared to healthy brains, Oh and colleagues found that the brains of Alzheimer’s patients had significant tau buildup in all three wakefulness-promoting brain centers they studied – the locus coeruleus (LC), lateral hypothalamic area (LHA), and tuberomammillary nucleus (TMN) – and that these regions had lost as many as 75 percent of their neurons.

portrait on Jun Oh.
Jun Oh, lead author of the study. 

“It’s remarkable because it’s not just a single brain nucleus that’s degenerating, but the whole wakefulness-promoting network,” Oh said. “Crucially this means that the brain has no way to compensate because all of these functionally related cell types are being destroyed at the same time.”

Oh and colleagues also studied brain samples from seven patients with progressive supranuclear palsy (PSP) and corticobasal disease (CBD), two distinct forms of neurodegenerative dementia caused by tau accumulation. In contrast to the Alzheimer’s disease brains, wakefulness-promoting neurons appeared to be spared in the PSP and CBD brains, despite comparable levels of tau buildup in these tissue samples.

“It seems that the wakefulness-promoting network is particularly vulnerable in Alzheimer’s disease,” Oh said. “Understanding why this is the case is something we need to follow up in future research.”

Studies Point to Role of Tau Protein in Alzheimer’s Symptoms

The new results are in line with an earlier study by Grinberg’s group which showed that people who died with elevated levels of tau protein in their brainstem – corresponding to the earliest stages of Alzheimer’s disease – had already begun to experience changes in mood, such as anxiety and depression, as well as increased sleep disturbances.

“Our new evidence for tau-linked degeneration of the brain’s wakefulness centers provides a compelling neurobiological explanation for those findings,” Grinberg said. “It suggests we need to be much more focused on understanding the early stages of tau accumulation in these brain areas in our ongoing search for Alzheimer’s treatments.”

These studies add to a growing recognition among some researchers that tau buildup is more closely linked to the actual symptoms of Alzheimer’s than the more widely studied amyloid protein, which has so far failed to yield effective Alzheimer’s therapies.

For instance, another recent study by the Grinberg lab measured tau buildup in the brains of patients who died with different clinical manifestations of Alzheimer’s disease, including variants that involved language impairment or visual problems instead of more typical memory loss. They found that differences in local tau burden in these patients’ brains closely matched their symptoms: patients with language impairments had more tau accumulation in language related brain areas than in memory regions, while patients with visual problems had higher tau levels in visual brain areas.

“This research adds to a growing body of work showing that tau burden is likely a direct driver of cognitive decline,” Grinberg said.

Increased focus on the role of tau in Alzheimer’s suggests that treatments currently in development at UCSF’s Memory and Aging Center and elsewhere that directly tackle tau pathology have the potential to improve sleep and other early symptoms of Alzheimer’s disease, in addition to holding a key to slowing the progress of the disease overall, the authors say.

Authors: See study online for full list of authors.

Funding: This study was supported by The Rainwater Foundation and grants from the National Institutes of Health (R01AG064314, R01AG060477, P50AG023501, P01AG019724, K24AG053435), the Global Brain Health Institute, and the São Paulo Research Foundation (FAPESP).

Disclosures: The authors declare no conflicts of interest.

The University of California, San Francisco (UCSF) is exclusively focused on the health sciences and is dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes UCSF Health, which comprises three top-ranked hospitals, as well as affiliations throughout the Bay Area.

Source
August 2019| The Regents of The University of California – Alzheimer’s Disease Destroys Neurons that Keep Us Awake By Nicholas Weiler

Apathy: The forgotten symptom of dementia

Press Release
July 2019| University of Exeter – Apathy: The forgotten symptom of dementia

Apathy is the most common neuropsychiatric symptom of dementia, with a bigger impact on function than memory loss – yet it is under-researched and often forgotten in care.

photo of elderly man sitting on wooden chair outside house
Photo by weedlyr on Pexels.com

A new study has found that apathy is present nearly half of all people with dementia, with researchers finding it is often distinct from depression.

Although common, apathy is often ignored as it is less disruptive in settings such as care homes than symptoms like aggression. Defined by a loss of interest and emotions, it is extremely distressing for families and it is linked with more severe dementia and worse clinical symptoms.

Now, research led by the University of Exeter and presented at the Alzheimer’s Association International Conference in LA has analysed 4,320 people with Alzheimer’s disease from 20 cohort studies, to look at the prevalence of apathy over time.

At the start of the study, 45% presented with apathy, and 20% had persistent apathy over time. Researchers found that a proportion had apathy without depression, which suggests that the symptom might have its own unique clinical and biological profile when compared to apathy with depression and depression only.

Miguel de Silva Vasconcelos, PhD student at the University of Exeter and King’s College London, said : “Apathy is an under-researched and often ignored symptom of dementia. It can be overlooked because people with apathy seem less disruptive and less engaging, but it has a huge impact on the quality of life of people living with dementia, and their families. Where people withdraw from activities, it can accelerate cognitive decline and we know that there are higher mortality rates in people with apathy. It’s now time this symptom was recognised and prioritised in research and understanding.”

Professor Clive Ballard, of the University of Exeter Medical School, said: “Apathy is the forgotten symptom of dementia, yet it can have devastating consequences. Our research shows just how common apathy is in people with dementia, and we now need to understand it better so we can find effective new treatments. Our WHELD study to improve care home staff training through personalised care and social interaction included an exercise programme that improved apathy, so we know we can make a difference. This is a real opportunity for interventions that could significantly benefit thousands of people with dementia.”

The presentation was entitled ‘The Course of Apathy in People with Dementia’.

Australia’s residential aged care facilities are getting bigger and less home-like

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Residential aged care facilities should be more like a home and less like a hospital.
from shutterstock.com

Ralph Hampson, University of Melbourne

Most older people want to stay at home as long as they can. When this is no longer possible, they move into residential aged care facilities, which become their home. But Australia’s care facilities for the aged are growing in size and becoming less home-like.

In 2010–11, 54% of residential aged care facilities in major Australian cities had more than 60 places, and the size of the average facility is growing.

Today, more than 200,000 Australians live or stay in residential aged care on any given day. There are around 2,672 such facilities in Australia. This equates to an average of around 75 beds per facility.

Large institutions for people with disability and mental illness, as well as orphaned children, were once commonplace. But now – influenced by the 1960s deinstitutionalisation movement – these have been closed down and replaced with smaller community-based services. In the case of aged care, Australia has gone the opposite way.




Read more:
How our residential aged-care system doesn’t care about older people’s emotional needs


Why is smaller better?

Evidence shows that aged care residents have better well-being when given opportunities for self-determination and independence. Internationally, there has been a move towards smaller living units where the design encourages this. These facilities feel more like a home than a hospital.

The World Health Organisation has indicated that such models of care, where residents are also involved in running the facility, have advantages for older people, families, volunteers and care workers, and improve the quality of care.

In the US, the Green House Project has built more than 185 homes with around 10-12 residents in each. Studies show Green House residents’ enhanced quality of life doesn’t compromise clinical care or running costs.

Older people have a better quality of life if they can be involved in outdoor activities.
from shutterstock.com

Around 50% of residents living in aged care facilities have dementia. And research has shown that a higher quality of life for those with dementia is associated with buildings that help them engage with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities.

In June 2018, an Australian study found residents with dementia in aged-care facilities that provided a home-like model of care had far better quality of life and fewer hospitalisations than those in more standard facilities. The home-like facilities had up to 15 residents.

The study also found the cost of caring for older people in the smaller facilities was no higher, and in some cases lower, than in institutionalised facilities.




Read more:
Caring for elderly Australians in a home-like setting can reduce hospital visits


There are some moves in Australia towards smaller aged care services. For example, aged care provider Wintringham has developed services with smaller facilities for older people who are homeless. Wintringham received the Building and Social Housing Foundation World Habitat Award 1997 for Wintringham Port Melbourne Hostel. Its innovative design actively worked against the institutional model.

Bigger and less home-like

Historically, nursing homes in Australia were small facilities, with around 30 beds each, often run as family businesses or provided by not-for-profit organisations. Between 2002 and 2013 the proportion of facilities with more than 60 beds doubled to 48.6%. Financial viability rather than quality of care drove the increase in size.

Today, around 45% of facilities are operated by the private for-profit sector, 40% by religious and charitable organisations, 13% by community-based organisations, 3% by state and territory governments, and less than 1% by local governments.




Read more:
It’s hard to make money in aged care, and that’s part of the problem


In 2016, the Australian Institute of Health and Welfare (AIHW) reported that residential care services run by government organisations were more likely to be in small facilities. One-fifth (22%) of places in these facilities are in services with 20 or fewer places. Almost half (49%) of privately-run residential places are found in services with more than 100 places.

All of this means that more older Australians are living out their last days in an institutional environment.

Once larger facilities become the norm, it will be difficult to undo. Capital infrastructure is built to have an average 40-year life, which will lock in the institutional model of aged care.

The built environment matters. The royal commission provides an opportunity to fundamentally critique the institutional model.

Ralph Hampson, Senior Lecturer, Health and Ageing, University of Melbourne

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Empathy, a key ingredient in culture change

News Release
April 2019 | University of Pennsylvania – Empathy and cooperation go hand in hand

Taking a game theory approach to study cooperation, School of Arts and Sciences evolutionary biologists find that empathy can help cooperative behavior ‘win out’ over selfishness.

It’s a big part of what makes us human: we cooperate. But humans aren’t saints. Most of us are more likely to help someone we consider good than someone we consider a jerk.

Two figures have heated discussion as a third in the middle observes
Taking the perspective of another can help foster cooperation in a group, according to a new study by Penn evolutionary biologists.

How we form these moral assessments of others has a lot to do with cultural and social norms, as well as our capacity for empathy, the extent to which we can take on the perspective of another person.

In a new analysis, researchers from the University of Pennsylvania investigate cooperation with an evolutionary approach. Using game-theory-driven models, they show that a capacity for empathy fosters cooperation, according to senior author Joshua Plotkin, an evolutionary biologist. The models also show that the extent to which empathy promotes cooperation depends on a given society’s system for moral evaluation.

“Having not just the capacity but the willingness to take into account someone else’s perspective when forming moral judgments tends to promote cooperation,” says Plotkin.

What’s more, the group’s analysis points to a heartening conclusion. All else being equal, empathy tends to spread throughout a population under most scenarios.

“We asked, ‘can empathy evolve?’” explains Arunas Radzvilavicius, the study’s lead author and a postdoctoral researcher who works with Plotkin. “What if individuals start copying the empathetic way of observing each other’s interactions? And we saw that empathy soared through the population.”

Plotkin and Radzvilavicius coauthored the study, published today in eLife, with Alexander Stewart, an assistant professor at the University of Houston.

Plenty of scientists have probed the question of why individuals cooperate through indirect reciprocity, a scenario in which one person helps another not because of a direct quid pro quo but because they know that person to be “good.” But the Penn group gave the study a nuance that others had not explored. Whereas other studies have assumed that reputations are universally known, Plotkin, Radzvilavicius, and Stewart realized this did not realistically describe human society, where individuals may differ in their opinion of others’ reputations.

“In large, modern societies, people disagree a lot about each other’s moral reputations,” Plotkin says.

The researchers incorporated this variation in opinions into their models, which imagine someone choosing either to donate or not to donate to a second person based on that individual’s reputation. The researchers found that cooperation was less likely to be sustained when people disagree about each other’s reputations.

That’s when they decided to incorporate empathy, or theory of mind, which, in the context of the study, entails the ability to understand the perspective of another person.

Doing so allowed cooperation to win out over more selfish strategies.

“It makes a lot of sense,” Plotkin says. “If I don’t account for your point of view, there will be many occasions when I judge you harshly when I really shouldn’t because, from your perspective, you were doing the right thing.”

To further explore the impact of empathy on cooperation, the researchers looked at a variety of frameworks, or social norms, that people might use to assign a reputation to another person based on their behavior. For example, most frameworks label someone “good” if they reward a fellow “good” individual, but social norms differ in how they judge interactions with a person deemed bad. While the “stern judging” norm labels “good” anyone who punishes a bad actor, the “simple standing” norm does not require this punitive approach: A “good” person can reward a bad one.

Plotkin, Radzvilavicius, and Stewart discovered again that capacity for empathy mattered. When populations were empathetic, stern judging was the best at promoting cooperation. But when a group was less willing to take on the perspective of another, other norms maximized rates of cooperation.

This result prompted the team to ask another evolutionary question—whether empathy itself can evolve and become stable in a population. And under most scenarios, the answer was yes.

“Starting with a population where no one is empathetic, with people judging each other based on their own perspective, we saw that eventually individuals will copy the behavior of those who judge empathetically,” says Plotkin. “Empathy will spread, and cooperation can emerge.”

This was the case even when the researchers accounted for a degree of errors, noise, and misperception in their models.

The findings open up a new area of research for both evolutionary theory and empirical studies into how societies behave.

“Empathy is completely foreign to game theory,” Radzvilavicius say. “In a way this is finding a new niche for research to progress to in the future, accounting for theory of mind.”

Looking ahead, the Penn team hopes to pursue such questions, perhaps by pitting different social norms against one another and eventually by testing their ideas against observations from real people, either through experiments they design or through data collected from social media.

“It’s obvious that in social media people are acutely aware of their public persona and reputation and curate it carefully,” Plotkin says. “It would be fascinating to analyze these evolutionary dynamics as they play out in online interactions.”

The study was supported by the David and Lucile Packard Foundationand the U.S. Army Research Office (Grant W911NF-12-R-0012-04).

Joshua B. Plotkin is a professor in the Department of Biology in the University of Pennsylvania School of Arts and Sciences. He has secondary appointments in the Department of Mathematics and the School of Engineering and Applied Science’s Department of Computer and Information Science.

Arunas L. Radzvilavicius is a postdoctoral researcher in Penn’s Department of Biology.

Alexander J. Stewart is an assistant professor at the University of Houston and a former postdoctoral researcher at Penn.

Don’t wait for a crisis – start planning your aged care now

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The earlier you start planning, the better.
Shutterstock

Alison Rahn, Western Sydney University

Most Australians prefer to die at home but few adequately plan for it. Consequently, just one in seven dies at home.

Some say they will make plans “when the need arises”. But what if you have a heart attack, go into a coma, have a stroke, or develop dementia before having shared your thoughts? We’re all ageing and none of us knows when our health will deteriorate to the point where we need daily domestic or medical assistance.

In the absence of clear instructions, you may instead be admitted into a hospital or aged care facility. That’s where most Australians aged 65 and over end up dying.




Read more:
A good death: Australians need support to die at home


The earlier you start planning for your aged care, the better. To start off, think about the possible scenarios you may encounter in later life.

Consider whom you wish to maintain relationships with, including intimate partners.

Think about how you will pay for home and aged care services, and whom you might rely on to be your advocate or carer.

Communicate your decisions (verbally and in writing) in as much detail as possible to those who need to know, such as future carers and health providers. This removes much of the guesswork later.

Relying on government-funded services is risky

Government-funded home care packages are intended to keep people in their homes for as long as possible. They provide supplementary support such as cleaning or shopping services, home visits by nurses and, in some cases, equipment to help with mobility or minor home modifications.

But while demand for these services is increasing, staffing and funding levels aren’t keeping up. Older Australians wait, on average, 18-24 months to access a home care package. In the meantime, many people are forced to move into residential care.




Read more:
Explainer: what is a home care package and who is eligible?


More than 3.5 million Australians are expected to be using aged care services by 2050. This would require an additional 980,000 workers in the aged care workforce.

However, aged care providers already report a shortage of workers. In fact, the home care workforce has declined since 2012, meaning much-needed home care services are not always available.

Many older Australians want to stay in their homes for as long as possible.
Elien Dumon

It’s also important to note that Australia’s aged care system is increasingly moving to a “user pays” model, whereby aged care clients are means-tested and expected to contribute financially to their care.

So it’s unwise to assume government funding will be sufficient to pay for your aged care services.

Attitudes to residential aged care

Aged care horror stories abound in the media, especially now the Royal Commission into Aged Care Quality and Safety is underway. Unfortunately, equal media coverage is not afforded to the many excellent aged care facilities in Australia.

The royal commission reported some Australians would rather die than live in residential aged care. But there is scarcely any research into public perceptions of residential aged care and whether they change over time.




Read more:
Would you like to grow old at home? Why we’re struggling to meet demand for subsidised home care


In my own research, such attitudes resulted from exposure to negative media coverage, visiting residential aged care facilities, or working in aged care. Of particular concern were issues typical of institutional living – lack of privacy, personal choice or control. This was a particular issue for partnered residents, who represent one-third of aged care residents.

However, simply making a pronouncement that you reject residential care is not sufficient to prevent it happening. Entry into residential care usually happens in response to a crisis, either because people live alone or because family carers can no longer cope. The most common trigger is dementia.

Besides residential aged care, your other options include living independently with or without voluntary family or community support, a home care package and/or self-funded care. However, every scenario requires that you prepare in advance as follows.

Maintaining social connections and learning can decrease your risk of dementia.
Val Vesa

Preparing for the end of your life

On an individual level, there are five important things you can do for yourself.

1. Adopt a healthy lifestyle

Learn about dementia, which is preventable in one-third of cases. Make lifestyle changes to reduce this and other diseases of old age. Maintaining social connections, getting regular exercise, lifelong learning, quitting smoking, losing weight, treating depression and even correcting for hearing loss all make a significant difference.




Read more:
Some brain training programs are backed by evidence. Here’s how to pick them


2. Consult a financial planner

Early in your working life, plan your retirement income to last to 90 years of age and beyond. Aim to be debt-free and factor in costs associated with home care.

Assume you’ll be one of the 62% of people over 85 who needs residential aged care in their final years and budget accordingly. For this, you will need a bond of A$300,000 to A$500,000 minimum. Except in the lowest socioeconomic groups (who are exempted from bonds), insufficient bond money means many people, especially if they’re partnered, will not be able to afford residential aged care.

3. Talk about your wishes

First consider your preferences: where you want to die, who cares for you and what provisions you are likely to need. Then make your wishes widely known, especially to anyone you’d like to have care for you.

4. Write it down

Record your wishes using formal end-of-life planning tools well before you need them. Learn about Enduring Guardianship, Enduring Power of Attorney and Advance Care Planning in your state. By recording your wishes and nominating representatives, you will be reducing the stress and uncertainty for your family and health providers.

End of life planning tools can help.
Trinity Treft

Choose representatives who will willingly act as advocates on your behalf, to ensure your wishes will be carried out. Advance care planning is especially important if you do not want medical intervention to keep you alive.

5. Choose carefully where you live

Consider the suitability of your home and suburb if walking becomes difficult and driving is no longer an option. Are you near a hospital? Can you reach it by public transport? Can you walk to the shops? Is your garden high-maintenance? Are friends and family nearby? Are there services available that could come to your home? Move before you need to.

Support (and be supported by) your community

Ageing is a whole-of-community issue – it affects us all. We cannot expect individuals to be solely responsible for their care.

In the past, caring for older people in their final years was routinely carried out by families and communities. This is still the best strategy. But it relies on communities forming volunteer groups to actively care for their older people.

To safeguard your future, support a volunteer organisation in your neighbourhood, such as Compassionate Communities (in Sydney, the Blue Mountains, and southwest Western Australia), One Good Street (in Melbourne), Good Karma Networks (in Victoria, South Australia, New South Wales, Queensland and New Zealand), or Amitayus Home Hospice (in Byron Shire, NSW).

Some of these organisations provide training for those caring for older people. Others invite neighbours to help each other by sharing their knowledge or skills with older people and their carers.




Read more:
As home care packages become big business, older people are not getting the personalised support they need


Alison Rahn, Adjunct Research Fellow, School of Humanities, Arts & Social Sciences, University of New England; Senior Research Officer, School of Social Sciences & Psychology, Western Sydney University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Personhood

Reading up on all the news, reports and discussions on the aged care royal commission, it makes me wonder if personhood is forgotten in dementia care. Recognition, respect and trust is not rocket science and that’s just common sense. What’s happened to aged care? Why is it that people living with dementia are now being objectified, disrespected and feared in aged care. How did we go so wrong?

TomKW2019.png

As home care packages become big business, older people are not getting the personalised support they need

File 20190319 28492 1hdvn7y.jpg?ixlib=rb 1.1

Many older Australians prefer to stay at home than enter residential aged care – but the process of securing home care is riddled with complexities.
From shutterstock.com

Lyn Phillipson, University of Wollongong and Louisa Smith, University of Wollongong

The Royal Commission into Aged Care has unleashed a spate of claims of system failure within the residential aged care sector.

Now, as the commission shifts its focus to care in the community, we’re also seeing claims of failure within the home care packages program.

This scheme aims to support older people with complex support needs to stay at home. But what we’ve got is a market-based system where the processes involved in accessing support and managing services are making it difficult for vulnerable older Australians to receive the care they want.

If this system is to be workable, older people need better information and more personalised supports to enable choice and control – especially those with complex needs.




Read more:
Would you like to grow old at home? Why we’re struggling to meet demand for subsidised home care


Consumer directed care

A growing number of older Australians are receiving home care subsidised by the government. During the 2017-18 financial year, 116,843 people accessed home care packages.


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From July 1 2015, all home care packages have been delivered on what’s called a Consumer Directed Care basis.

This means that, theoretically, home care providers must work with consumers to design and deliver services that meet their goals and care needs, as determined by an Aged Care Assessment Team.

However, in reviewing the active steps outlined in the government pathway to access a package, we must consider the person who is navigating this path.

They are frail older people with complex support needs, often seeking help at times of crisis. These include the growing number of older Australians living with multiple medical conditions and complex age-related syndromes such as dementia.




Read more:
Explainer: what is a home care package and who is eligible?


After a person has been assessed, they will receive a letter informing them they are eligible. However, due to long waiting lists, this does not provide them with immediate access to care; most wait many months before they are actually assigned a package by My Aged Care.

When they eventually receive a letter confirming their package, the consumer will be approached by various service providers. They will need to sign a complex contract with their chosen provider.

If the consumer is feeling frustrated and confused during these early stages, this is only the beginning. The recent marketisation of home care means managing their own care requires going through impersonal, centralised provider systems.


The Conversation, CC BY-ND

People need clear information to choose a provider

The first thing people assigned a home care package need to do is choose a care provider.

There are now close to 900 different providers offering home care packages. This includes not-for-profits, as well as a growing number of for-profit providers competing for new business.


https://datawrapper.dwcdn.net/o1vsF/1/


In reality, however, few older people research different providers. Once they’re assigned a home care package, their name is placed on a centralised database accessible by all registered service providers.

The person then receives unsolicited phone calls from the sales teams of different providers, offering their services and trying to make appointments to come and visit. For consumers, this represents a shift from a familiar government model of care provision to a market model.

Research shows consumers often don’t understand consumer directed care, and this can leave them vulnerable to the forceful marketing tactics employed by some providers. It can also make negotiating a complex contract with legal, financial and personal implications very difficult.

Older people granted a home care package will be approached by different providers wanting their business.
From shutterstock.com

To make informed choices between providers, people need accessible information. There is currently insufficient information for older people and their families to compare services on indicators of quality (such as the number of complaints agencies receive, the training of staff, the types of specialist services they offer, and so on).

To address this gap, the government must commit to collecting and publishing data on home care quality. This would drive service improvement and increase people’s ability to make informed choices between different providers.

Service and administrative fees

To make informed choices, people also need to be able to compare services on the basis of price.

The average profit per client for home care package providers was A$2,832 in 2016-17, but there’s significant variability between providers’ fees.

For example, the use of people’s individual care budgets to cover administration or case management fees ranges between 10-45% of their total package.

High fees and administrative costs may reveal the profit-driven motives of a few unscrupulous providers.




Read more:
What is ‘quality’ in aged care? Here’s what studies (and our readers) say


Because of administrative fees, many people are spending a high portion of their individual budgets on case management to support their care.

While there’s evidence case management can provide clinical benefits for older people, in the context of the current home care funding model, it may also leave people with less money for direct care services than they need.

People need support to manage their packages

We’re currently looking at the experiences of people with dementia using home care packages. Unsurprisingly, we’re finding that while they are grateful for the services they’re receiving, they are having a difficult time managing their care. For some this may be due to their limited decision-making capacity, but for many, their choice and control is being limited as much by the service model.

For example, to enable providers to compete in the open market, many have adopted central 1800 numbers to support people to manage their services. This means if consumers want to change something, they are funnelled through this system.

Think about your own experience of service helplines, such as with telephone or energy companies. Now consider a woman with dementia who needs to call a 1800 number to change the time of her shower so she can see her doctor.

Rather than communicating with a local and known case manager, she now needs to speak to someone she doesn’t know and who is not familiar with her care needs.

Instead of facilitating choice and control, this demand on the consumer to constantly articulate their needs to unfamiliar people means many are frustrated, and some are even opting out of services.

How can we improve things?

The three words the government associates with consumer directed home care are choice, control and markets.

But the system doesn’t foster control. Although consumers technically have choices, the marketised and bureaucratic approaches of service providers make it difficult for consumers to articulate and receive support for their personal choices.

The processes, information and supports available to assist older people and their families are inadequate to facilitate the type of choices and control one might associate with “consumer directed” care.




Read more:
Seven steps to help you choose the right home care provider


There’s an urgent need to improve the processes for accessing timely home care packages, particularly for those with complex support needs. This includes the quality and accessibility of information, resources and decision-making tools.

There’s also a significant need for training, advocacy and impartial support for choice, particularly for people with limited decision-making capacity, such as those living with dementia.

Research and practice in aged care and disability in other settings provide extensive resources for person-centred planning and decision making which could be adapted for use in our home care system.The Conversation

Lyn Phillipson, NHMRC-ARC Dementia Development Fellow, University of Wollongong and Louisa Smith, Research Fellow at AHSRI, University of Wollongong

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Aged care failures show how little we value older people – and those who care for them

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Our society should ensure older people remain employed and engaged in their communities, rather than pushed to the margins.
Shutterstock

Bridget Laging, La Trobe University; Amanda Kenny, La Trobe University, and Rhonda Nay, La Trobe University

As the royal commission begins investigating the failures of the residential aged care sector, it is important such a review also considers the broader socio-political factors that have contributed to this crisis.

The commission needs to go beyond the institutional problems at individual aged care facilities, as these are a symptom of a much broader rejection of ageing in society and marginalisation of older people.

Negative stereotyping of older people is reinforced in the media, and this both informs and reflects societal attitudes. In Western society especially, we fear dependency, invisibility and dying. Aged care is a silo of these fears. And until it affects us personally, we ignore it.

How older people are marginalised in society

We have an expiry date in our society. This is not the date we die, but a time when our skills and knowledge are no longer considered to be valid or useful. Our value is largely determined by our economic contributions to society. But for many older people, this is difficult to demonstrate because they’re no longer in the workforce.

The economic impact of societal rejection of ageing is significant. Modelling by Price Waterhouse Cooper indicates that Australia’s gross domestic product would increase by almost 5% if people were supported to work longer. And data from the Australian Bureau of Statistics reveal that many Australians would like to retire later if they could.

Yet, there is evidence that older people are routinely denied work. In 2016, Age Discrimination Commissioner Susan Ryan said there was an urgent need to “tackle the discrimination that forces people out of work years before they want to leave”.




Read more:
We’ve had 20 aged care reviews in 20 years – will the royal commission be any different?


While older people should be supported to work longer if they wish, over half of Australians between the ages of 65 and 80 report a moderate or severe disability, resulting in greater dependency. A 2017 study of late-life dependency published in The Lancet found that, on average, older people will require 24-hour care for 1.3 to 1.9 years of their lives.

However, it is important that older people are not considered redundant in their societal role when dependency increases.

Aged care workers are also undervalued

Residential aged care facilities fulfil an essential role in our society. Yet, our recent ethnographic study in two residential aged care facilities in Victoria shows how this role has been compromised by an under-skilled, under-valued and overworked aged care workforce.

Older people were exposed to a revolving door of anonymous workers, significantly reducing opportunities for teamwork and fostering relationships between staff and residents. In one of the not-for-profit facilities, a single registered nurse was responsible for the care of 73 residents. This contributed to the delegation of an increasing range of tasks to unregistered personal care assistants with minimal training and delays in recognising signs of health deterioration among residents.




Read more:
How our residential aged-care system doesn’t care about older people’s emotional needs


A reliance on general practitioners also increased the likelihood of hospital transfer. And hospital transfers can sometimes prove harmful, with previous studies showing that the noisy, fast-paced environment, bright lights and anonymous faces can have a negative impact on residents, particularly those with dementia.

Within the healthcare sector, aged care has the lowest status of all specialty areas amongst nurses and doctors. Recruiting appropriately qualified and skilled people to work in aged care is thus a constant challenge. Australia is expected to increasingly rely on imported labour to staff its aged care sector in the near future.

Ways to fix the system

Encouraging more healthcare professionals to enter the aged care sector will require a multi-pronged approach, starting with finding ways to engender more professional respect for those working in the field.

Greater emphasis also needs to be placed on improving the gerontological expertise of aged care workers. This can be strengthened by prioritising aged care in medical school education and recognising “nursing home” care as a specialist medical area. It is also imperative that personal care assistants receive greater recognition of the roles and duties they perform.




Read more:
Australia’s residential aged care facilities are getting bigger and less home-like


Registration of personal care assistants as third-tier health care professionals is well overdue to ensure better oversight of their training and scope of their practice.

We also need to recognise the importance of human connection in residential aged care facilities. This requires strategies to build better relationships between residents and staff, and developing a formula for more accurate staffing allocations that reflect the real time commitments involved in aged care.

Who bears the ultimate responsibility?

It’s not enough to be shocked by the aged care scandals uncovered by the media and the decision to appoint a royal commission to investigate. We must also make older people, their contributions and end-of-life needs more visible. Increased funding and oversight will only come when we collectively say it’s important.

It is incumbent on us to ensure that residential aged care facilities do not operate as holding bays for the silenced, or wastelands for the discarded, where the occupants are expected to demand nothing and be as little cost to society as possible.

We have an opportunity to reconstruct the delivery of residential aged care. Let’s begin with the end in mind: a society that not only values older people, but values the resources required to provide the care they need and deserve.The Conversation

Bridget Laging, PhD Candidate, La Trobe University, La Trobe University; Amanda Kenny, Violet Marshman Professor of Rural Health, La Trobe University, and Rhonda Nay, Emeritus Professor La Trobe University, La Trobe University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Chemical restraint has no place in aged care, but poorly designed reforms can easily go wrong

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Chemical restraint occurs more often than we think in Australia’s aged care system.
From shutterstock.com

Juanita Westbury, University of Tasmania

Last month the aged care minister Ken Wyatt announced he would introduce regulations to address the use of “chemical restraint” in residential aged care – a practice where residents are given psychotropic drugs which affect their mental state in order to “control” their behaviour.

Psychotropic medications used as “chemical restraints” are antipsychotics, antidepressants, anti-epileptics and benzodiazepines (tranquilisers).

Wyatt followed this announcement this month with a A$4.2 million funding pledge to better monitor care in nursing homes through mandatory “quality indicators”, and including one covering medication management.

Of course, you would be hard pressed to find a staff member admitting to controlling a resident by giving them a tablet. Instead, most staff would stress that medication was given to calm or comfort them.




Read more:
Physical restraint doesn’t protect patients – there are better alternatives


But our research shows psychotropic use is rife in Australia’s aged care system.

Reforms are desperately needed, but we need to develop the right approach and learn from countries that have tried to regulate this area – most notably the United States and Canada.

What’s the problem with antipsychotic drugs?

Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.

But large reviews conclude they don’t work very well. They decrease agitated behaviour in only one in five people with dementia. And there is no evidence they work for other symptoms such as calling out and wandering.

Due to their limited effect – and side effects, including death, stroke and pneumonia – guidelines stress that antipsychotics should only be given to people with dementia when there is severe agitation or aggression associated with a risk of harm, delusions, hallucinations, or pre-existing mental illness.

The guidelines also state antipsychotics should only be given when non-drug strategies such as personalised activities have failed, at the lowest effective dose, and for the shortest period required.




Read more:
Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients


The high rates of antipsychotic use in Australian aged care homes indicates the guidelines aren’t being followed.

In our study of more than 12,000 residents across 150 homes, we found 22% were taking antipsychotics every day. More than one in ten were were charted for these drugs on an “as required” basis.

We also found large variations in use between nursing homes, ranging from 7% to 44% of residents. How can some homes operate with such low rates, whereas others have almost half their residents taking antipsychotic medications?

Regulations to reduce chemical restraint

Of all countries, the US has made the most effort to address high rates of antipsychotic use.

After reports in the 1980s highlighting poor nursing home care, Congress passed the Omnibus Budget Reconciliation Act which sets national minimum standards of care, guidelines to assist homes to follow the law, and surveyors to enforce it.

For residents with dementia and behavioural symptoms, the regulations require documentation of the behaviour, a trial of non-drug strategies such as activity programs, and dose reductions after six months.

Prescribing practices vary widely between institutions.
From shutterstock.com

Homes that don’t meet these regulations are subject to a series of sanctions, ranging from financial penalties to closure.

The regulations were initially associated with substantial declines in antipsychotic use. By 1995 only 16% of residents were taking them.

But average rates of use rose to 26% by 2010. And in 2011, a Senate hearing found 83% of claims for antipsychotics in nursing homes were prescribed for unlicensed use.

This led advocates to conclude the regulations and surveyor guidance were ineffective.

Quality indicators to reduce chemical restraint

Another way to reduce antipsychotic use in aged care homes is by mandatory quality indicators, along with public reporting. The US introduced this in 2012. A similar system was instituted in Ontario, Canada, in 2015.

Measures are essential for quality improvement. But they can also lead to unintended consequences and cheating.

In the US, antipsychotic rates for people with dementia has allegedly reduced by 27% since the start of their quality indicator program.

But those diagnosed with schizophrenia were exempt from reporting. Then the percentage of residents listed as having schizophrenia doubled from 5% to nearly 10% of residents within the first few years of the initiative. So 20% of the reduction was probably due to intentional mis-diagnosis rather than an actual decrease in antipsychotic use.




Read more:
What is ‘quality’ in aged care? Here’s what studies (and our readers) say


A recent US study has also shown that the use of alternative sedating medications not subject to reporting, specifically anti-epileptic drugs, has risen substantially as antipsychotic use declined, indicating widespread substitution.

In Ontario, the use of trazadone, a sedating antidepressant, has also markedly increased since its antipsychotic reporting program began.

Reporting issues

In the US, nursing homes self-report indicators. A recent study compared nursing home data with actual prescribing claims, concluding that homes under-reported their antipsychotic prescribing, on average, by 1 percentage point.

Public reporting is often also time-consuming, with some researchers arguing that time spent managing quality indicators may be better spent providing care for residents.

Where to now?

Awareness of a problem is the first step to addressing it, and chemical restraint is a key issue coming to light in the aged care royal commission.

The proposed regulations and new quality indicator will allow homes and regulators to monitor the use of chemical restraint, but more importantly, should be used to assess the impact of training and other strategies to ensure appropriate use of psychotropic medications.

But to meet their full potential, these programs need to be carefully designed and evaluated to ensure that cheating, under-reporting and substitution does not occur like it did in North America.

Juanita Westbury, Senior Lecturer in Dementia Care, University of Tasmania

This article is republished from The Conversation under a Creative Commons license. Read the original article.

A multi-lingual approach to raising awareness of Dementia through film

https://youtu.be/bzPSzse-Te8

Media Release
FEBRUARY 2019| National Ageing Research Institute Limited. (NARI) – Multi-media movies to build understanding about dementia in multicultural Australia

Moving Pictures, an innovative multi-media program to raise awareness about dementia in people from multicultural communities, and how to access help has been launched in Melbourne by Minister for Senior Australians and Aged Care Ken Wyatt AM.

Coordinated by NARI, Moving Pictures is made up of fifteen short films co-produced with people from Tamil, Hindi, Cantonese, Mandarin and Arabic communities – Australia’s top five fastest growing cultural and linguistic groups.

The launch was attended by some of the movies’ stars who were congratulated by the Minister for becoming involved.

“I congratulate everyone involved in Moving Pictures because early awareness and diagnosis is one of the keys to giving people living with dementia better, longer lives,” said Minister Wyatt.

“Having seen the research team at work, I know Moving Pictures will make a big difference to so many families and individuals in our multicultural nation,” he added.

Carer Sonchoita Sagar, aged 46, signed up to take part in the project because she knew only too well what it was like to navigate the system for help. She came to Australia from India and has lived here for 20 years. A professional yoga instructor, Sonchoita cared for her mother and parents-in-law. It took her several years before she understood the system and where and how to ask for help.

Sonchoita was joined by Sukhwinder Rakhra, Miranda Mak, Mary Enkababian and Anita Barar, each of whom have their own experience as carers. In all, 57 families and 19 service providers in Melbourne, Sydney, and Perth were involved in the films’ production.

Associate Professor Bianca Brijnath, Director Social Gerontology, said Moving Pictures was a critical step forward in helping people from CALD backgrounds understand more about dementia and the services that are available.

“The reality is that there is limited awareness about dementia and that is resulting in delayed diagnosis, poorer prognosis, and a higher burden of care on families and health systems,” Dr Brijnath said.

Using film making to inform and educate these communities about dementia, and the importance of early diagnosis of dementia for better treatment and quality of life was deliberate, according to Dr Brijnath.  “Film-making has a long history of portraying the cultural complexities of everyday life, and lends itself well to the communities Moving Pictures is trying to reach,” Dr Brijnath added.

Moving Pictures was made in conjunction with Curtin University and guided by Dementia Australia, Chung Wah Association, Australian Nursing Home Foundation, Federation of the Indian Association of Victoria, the South Western Sydney Local Health District, and the Australian Arab Association.

Depending on funding the NARI team is anticipating taking the Moving Pictures concept to India and China. Globally, India and China are poised to have a 90% increase in dementia prevalence by 2020.

“Given such high numbers, these films have potential to become an international resource, pioneered in Australia, and adaptable to different cultural settings and varying literacy levels,” Dr Brijnath said.

Moving Pictures has been funded through the Federal Government’s Dementia and Aged Care Services research and innovation grants. The films, together with a mobile-optimised website and dementia comics, will now be rolled out across Australia.

The impact on Green Spaces on your Child’s Brain Health

Press Release
February 2018 | Aarhus University – Being surrounded by green space in childhood may improve mental health of adults by Peter Bondo

Being surrounded by green space in childhood may improve mental health of adults

Children who grow up with greener surroundings have up to 55% less risk of developing various mental disorders later in life. This is shown by a new study from Aarhus University, emphasizing the need for designing green and healthy cities for the future.

[Translate to English:]  Et nyt studie fra Aarhus universitet viser at børn, der vokser op med grønne omgivelser har op til 55% mindre risiko for at udvikle en psykisk lidelse senere i livet. Ifølge forskerne er integration af grønne omgivelser i byplanlægning vigtigt for at sikre grønne og sunde byer for eftertidens generationer. Modelfoto: Colourbox.dk

A new study from Aarhus University shows that children who grow up surrounded by high amounts of green space have up to 55% less risk of developing a mental disorder later in life. According to the researchers, integration of green space in urban planning is important to ensure green and healthy cities for the future generations. Model photo: Colourbox.dk.

A larger and larger share of the world’s population now lives in cities and WHO estimates that more than 450 millions of the global human population suffer from a mental disorder. A number that is expected to increase.

Now, based on satellite data from 1985 to 2013, researchers from Aarhus University have mapped the presence of green space around the childhood homes of almost one million Danes and compared this data with the risk of developing one of 16 different mental disorders later in life.

The study, which is published today in the prestigious American Journal PNAS, shows that children surrounded by the high amounts of green space in childhood have up to a 55% lower risk of developing a mental disorder – even after adjusting for other known risk factors such as socio-economic status, urbanization, and the family history of mental disorders.

The entire childhood must be green

Postdoc Kristine Engemann from Department of Bioscience and the National Centre for Register-based Research at Aarhus University, who spearheaded the study, says: “Our data is unique. We have had the opportunity to use a massive amount of data from Danish registers of, among other things, residential location and disease diagnoses and compare it with satellite images revealing the extent of green space surrounding each individual when growing up.”

Researchers know that, for example, noise, air pollution, infections and poor socio-economic conditions increase the risk of developing a mental disorder. Conversely, other studies have shown that more green space in the local area creates greater social cohesion and increases people’s physical activity level and that it can improve children’s cognitive development. These are all factors that may have an impact on people’s mental health.

“With our dataset, we show that the risk of developing a mental disorder decreases incrementally the longer you have been surrounded by green space from birth and up to the age of 10. Green space throughout childhood is therefore extremely important,” Kristine Engemann explains.

Green and healthy cities

As the researchers adjusted for other known risk factors of developing a mental disorder, they see their findings as a robust indication of a close relationship between green space, urban life, and mental disorders.

Kristine Engemann says: “There is increasing evidence that the natural environment plays a larger role for mental health than previously thought. Our study is important in giving us a better understanding of its importance across the broader population.”

This knowledge has important implications for sustainable urban planning. Not least because a larger and larger proportion of the world’s population lives in cities.

“The coupling between mental health and access to green space in your local area is something that should be considered even more in urban planning to ensure greener and healthier cities and improve mental health of urban residents in the future,” adds co-author Professor Jens-Christian Svenning from the Department of Bioscience, Aarhus University.

Further information:

Postdoc Kristine Engemann, Centre for Biodiversity Dynamics in a Changing World (BIOCHANGE) & Section for Ecoinformatics and Biodiversity, Department of Bioscience, Aarhus University, and The National Centre for Register-based Research, Department of Economics and Business, Aarhus BSS, Aarhus University. E-mail: engemann@bios.au.dk. Tel.: + 45 25368404.

Professor Carsten Bøcker Pedersen, The National Centre for Register-based Research, Department of Economics and Business, Aarhus BSS, Aarhus University. E-mail: cbp@econ.au.dk. Tel.: + 45 87165759.

Professor Jens-Christian Svenning, Centre for Biodiversity Dynamics in a Changing World (BIOCHANGE) & Section for Ecoinformatics & Biodiversity, Department of Bioscience, Aarhus University. E-mail: svenning@bios.au.dk. Tel.: 45+ 28992304.

Public / media

 

Physical restraint doesn’t protect patients – there are better alternatives

File 20190208 174851 x5tyjh.jpg?ixlib=rb 1.1

There are several methods by which elderly people are physically restrained in nursing homes.
From shutterstock.com

Joseph Ibrahim, Monash University

It’s an uncomfortable image to consider: an elderly person – perhaps somebody you know – physically restrained. Maybe an aged care resident deemed likely to fall has been bound to his chair using wrist restraints; or someone with dementia acting aggressively has been confined to her bed by straps and rails. These scenarios remain a reality in Australia.

Despite joining the global trend to promote a “restraint free” model, Australia is one of several high income countries continuing to employ physical restraint.

The Australian government has recently moved to regulate the use of physical and chemical restraints in aged care facilities. This comes ahead of the Royal Commission into Aged Care Quality and Safety.

Certainly this is a step in the right direction – but banning physical restraint is unlikely to remove it from practice. If we want to achieve a restraint free approach we need to educate the sector about viable alternatives, which aren’t always pharmacological.




Read more:
There’s no need to lock older people into nursing homes ‘for their own safety’


The scope of the problem

The rate of physical restraint in Australia is difficult to ascertain. One study across five countries examining the care of residents over one week reported between 6% (Switzerland) and 31% (Canada) of residents had been physically restrained.

These figures suggest a substantial, ingrained issue with multiple contributing factors. Issues might include inadequate staff knowledge and skills, insufficient resources, and difficulty accessing specialist services.

Empirical evidence demonstrates that physical restraints cause premature death as well as other serious physical and psychological harms.

While injuries caused directly by physical restraint could include falls and nerve injury, the impacts go beyond this. A significant consequence of restraint is its immobilising effects which can lead to incontinence, cognitive decline and a general deterioration in a person’s physical condition.

In physically restraining residents, staff are failing to employ other evidence‐based interventions. Behavioural and psychological symptoms of dementia can be managed by strategies such as improving sleep, controlling pain, music therapy, orientation therapy, and, if required, one-to-one care.

Preventing falls requires a multi-pronged approach including strengthening, balance training, medication review and co-ordination of care between doctors, nurses and therapists.

Physical restraint breaches a person’s human rights and dehumanises older members of our community.

Restraints don’t work

Our recent review of studies into the practice identified 174 deaths of nursing home residents due to physical restraint. The eight studies reviewed came from the US and Europe between 1986 and 2010.

This research reaffirmed the view that restrained individuals still experience falls, which the restraints often seek to prevent. But perhaps most compelling were the findings that physically restraining patients with dementia increases agitation, worsens behavioural and psychological symptoms, and hastens their cognitive decline.

Care staff need to be better equipped to look after patients without resorting to physical restraint.
From shutterstock.com

We’ve also undertaken a detailed analysis of resident deaths in Australian nursing homes reported to the coroner between 2000 and 2013. This uncovered only five deaths due to physical restraint. All residents had impaired mobility and the physical restraints had been applied to prevent falls. The residents died from neck compression and entrapment caused by the restraints.

Current processes

Most would expect the use of physical restraints would be closely monitored, with any harm reported to a regulatory or professional body. This is not necessarily the case in Australia.

Reporting often lags due to an unclear understanding about what constitutes physical restraint, and perhaps because little is forthcoming in the way of alternatives to address these residents’ care needs.

The only systematic voluntary scrutiny that could apply exists in principle, though not largely in practice, via the National Aged Care Quality Indicator Program. Fewer than 10% of aged care providers around the country participate in the quality indicator program, and the results of these audits are yet to be released publicly.

It’s only when a death occurs that a report to an independent authority – the Coroner’s Court – is made.




Read more:
Elder abuse report ignores impact on people’s health


Why legislating doesn’t go far enough

Similar laws introduced in other countries to ban physical restraint haven’t worked. In the US, there was an initial decrease in use of restraint and then a gradual return to previous levels.

Abolishing the use of physical restraints on nursing home residents remains challenging because of the widespread but incorrect perception that physical restraints improve resident safety. Nursing staff report using physical restraints to guarantee residents’ safety; to control resident behaviour while fulfilling other tasks; or to protect themselves and others from perceived harm or risk of liability.

Changing laws does not change attitudes. Education and training is required to dispel the myths and inform that better options than physical restraint already exist. Otherwise staff, family and the general public will continue with a mistaken belief it is safer to restrain a person than allow them to move freely, or that restraint is necessary to protect other residents or staff.

Our team convened an expert panel to develop recommendations for addressing the issue. We considered three of our 15 recommendations to prevent the use of physical restraint among nursing home residents the most important.

The first is establishing and mandating a single, standard, nationwide definition for describing “physical restraint”. A universal definition of what constitutes physical restraint enables consistent reporting and comparability in nursing homes.

Secondly, when there are no viable alternatives to physical restraint, any use should trigger mandatory referral to a specialist aged care team. This team should review the resident’s care plan and identify strategies that eliminate the use of physical restraint. This requires improved access to health professionals with expertise in dementia and mental health when a nursing home calls for help.

Thirdly, nursing home staff competencies should be appropriate to meet the complex needs of residents, particularly those with dementia. This is the long term solution to eradicate the need to apply physical restraint and is achievable with national education and training programs.

The harm from physical restraint is well documented, as are the potential solutions. Changing the legislation is a necessary step, but will not change practice on its own. Addressing as many of the underlying contributing factors as possible should commence alongside the government’s call for tougher regulations.The Conversation

Joseph Ibrahim, Professor, Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Alzheimer associations in Asia

Asiaorg

Many caregivers in Asia can agree, it’s super hard to find resources and in some countries, it’s hard even to know where to start. When we go online there are so many websites and resources, it’s hard to even know where to start. It’s hard especially when a lot of information tends to be advertisements for private organisations promoting their services. When this post from Monica Cations post popped up on twitter, it was like, wow, what a great idea!

Let’s have one for countries in Asia. The list is below is one for Asia, and if you wish to view the full list of organisations, you can visit https://www.alz.co.uk/associations

Bangladesh *                     www.alzheimerbd.com

Brunei **                            demensia.brunei@gmail.com

China                                     www.adc.org.cn

Hong Kong SAR                 www.hkada.org.hk

Indonesia                            www.alzi.or.id

Japan                                    www.alzheimer.or.jp

Macau SAR                         www.mada.org.mo

Malaysia                              www.adfm.org.my

Philippines                          www.alzphilippines.com

Republic of Korea             www.silverweb.or.kr

Singapore                            www.alz.org.sg

Sri Lanka                              www.alzlanka.org

TADA Chinese Taipei       www.tada2002.org.tw

Thailand                               www.azthai.org

Diseases through the decades – here’s what to look out for in your 40s, 60s, 80s and beyond

File 20181218 27767 hj5zbd.jpg?ixlib=rb 1.1

You’re another year older but that doesn’t have to mean poorer health.
Lorene Farrugia

Stephanie Harrison, South Australian Health & Medical Research Institute; Azmeraw T. Amare, South Australian Health & Medical Research Institute; Jyoti Khadka, South Australian Health & Medical Research Institute; Maria Carolina Inacio, South Australian Health & Medical Research Institute; Sarah Bray, South Australian Health & Medical Research Institute, and Tiffany Gill, University of Adelaide

Many diseases develop and become more likely as we age. Here are some of the most common conditions, and how you can reduce your risk of getting them as you clock over into a new decade.

In your 40s

Maintaining a healthy weight can reduce the risk of developing arthritis, coronary heart disease, and other common and related conditions, including back pain, type 2 diabetes, stroke, and many cancers. But almost one-third of Australians in their 40s are obese and one in five already have arthritis.




Read more:
Arthritis isn’t just a condition affecting older people, it likely starts much earlier


From the age of 45 (or 35 for Aboriginal and Torres Strait Islanders), heart health checks are recommended to assess risk factors and initiate a plan to improve the health of your heart. This may include changing your diet, reducing your alcohol intake, increasing your physical activity, and improving your well-being.

Checks to identify your risk of type 2 diabetes are also recommended every three years from age 40 (or from age 18 for Aboriginal and Torres Strait Islanders).

If you don’t already have symptoms of arthritis or if they’re mild, this decade is your chance to reduce your risk of the disease progressing. Focus on the manageable factors, like shedding excess weight, but also on improving muscle strength. This may also help to prevent or delay sarcopenia, which is the decline of skeletal muscle tissue with ageing, and back pain.

Achieving and maintaining a healthy weight will set you up for decades of better health.
Sue Zeng

Most people will begin to experience age-related vision decline in their 40s, with difficulty seeing up close and trouble adjusting to lighting and glare. A baseline eye check is recommended at age 40.

In your 50s

In your 50s, major eye diseases become more common. Among Australians aged 55 and above, age-related macular degeneration, cataracts, diabetes-related eye diseases and glaucoma account for more than 80% of vision loss.

A series of health screenings are recommended when people turn 50. These preventive measures can help with the early detection of serious conditions and optimising your treatment choices and prognosis. Comprehensive eye assessments are recommended every one to two years to ensure warning signs are detected and vision can be saved.

National cancer screening programs for Australians aged 50 to 74, are available every two years for bowel and breast cancer.




Read more:
Women should be told about their breast density when they have a mammogram


To screen for bowel cancer, older Australians are sent a test in the post they can do at home. If the test is positive, the person is then usually sent for a colonoscopy, a procedure in which a camera and light look for abnormalities of the bowel.

In 2016, 8% of people screened had a positive test result. Of those who underwent a colonoscopy, 1 in 26 were diagnosed with confirmed or suspected bowel cancer and one in nine were diagnosed with adenomas. These are potential precursors to bowel cancer which can be removed to reduce your future risk.

To check for breast cancer, women are encouraged to participate in the national mammogram screening program. More than half (59%) of all breast cancers detected through the program are small (less than or equal to 15mm) and are easier to treat (and have better survival rates) than more advanced cancers.

In your 60s

Coronary heart disease, chronic obstructive pulmonary disease (a disease of the lungs that makes breathing difficult), and lung cancer carry the biggest disease burden for people in their 60s.

If you’re a smoker, quitting is the best way to improve both your lung and heart health. Using evidence-based methods to quit with advice from a health professional or support service will greatly improve your chances of success.

Quitting smoking is the best way to improve your health.
Ian Schneider

The build-up of plaques in artery walls by fats, cholesterol and other substances (atherosclerosis) can happen from a younger age. But the hardening of these plaques and narrowing of arteries, which greatly increases the risk of heart disease and stroke, is most likely to occur from age 65 and above.

Exercise protects against atherosclerosis and research consistently shows any physical activity is better than nothing when it comes to heart health. If you’re not currently active, gradually build up to the recommended 30 minutes of moderate-intensity exercise on most, preferably all, days.




Read more:
Too much salt and sugar and not enough exercise – why Australians’ health is lagging


Other potentially modifiable risk factors for stroke include high blood pressure, a high-fat diet, alcohol consumption, and smoking.

Your 60s is also a common decade for surgeries, including joint replacements and cataract surgery. Joint replacements are typically very successful, but are not an appropriate solution for everyone and are not without risks. After a joint replacement, you’ll benefit from physiotherapy, exercise, and maintaining a healthy weight.

The treatment for cataracts is to surgically remove the cloudy lens. Cataract surgery is the most common elective surgery worldwide, with very low complication rates, and provides immediate restoration of lost vision.

In your 70s

Many of the conditions mentioned above are still common in this decade. It’s also a good time to consider your risk of falls. Four in ten people in their 70s will have a fall and it can lead to a cascade of fractures, hospitalisations, disability and injury.

Osteoporosis is one cause of falls. It occurs most commonly in post-menopausal women but almost one-quarter of people with osteoporosis are men. Osteoporosis is often known as a silent disease because there are usually no symptoms until a fracture occurs. Exercise and diet, including calcium and vitamin D, are important for bone health.

Exercise and diet can improve bone health.
Geneva, Switzerland

Older people are also vulnerable to mental health conditions because of a combination of reduced cognitive function, limitations in physical health, social isolation, loneliness, reduced independence, frailty, reduced mobility, disability, and living conditions.

In your 80s and beyond

Dementia is the second most common chronic condition for Australians in their 80s, after coronary heart disease – and it’s the most common for people aged 95 and above.

Many people think dementia is a normal part of the ageing process, but around one-third of cases of dementia could be prevented by reducing risk factors such as high blood pressure and obesity at mid-life.




Read more:
Why people with dementia don’t all behave the same


Early diagnosis is important to effectively plan and initiate appropriate treatment options which help people live well with dementia. But dementia remains underdiagnosed.

Around 70% of Australians aged 85 and above have five or more chronic diseases and take multiple medications to manage these conditions. Effective medication management is critical for people living with multiple conditions because medications for one condition may exacerbate the symptoms of a different coexisting condition.The Conversation

Stephanie Harrison, Research fellow, South Australian Health & Medical Research Institute; Azmeraw T. Amare, Postdoc researcher, South Australian Health & Medical Research Institute; Jyoti Khadka, Research Fellow, South Australian Health & Medical Research Institute; Maria Carolina Inacio, Director, Registry of Older South Australians, South Australian Health & Medical Research Institute; Sarah Bray, Registry of Older South Australians (ROSA) – Project Manager & Consumer Engagement Officer, South Australian Health & Medical Research Institute, and Tiffany Gill, Senior Research Fellow, University of Adelaide

This article is republished from The Conversation under a Creative Commons license. Read the original article.

How to reduce your risks of dementia

File 20190122 100279 kp4r7i.jpg?ixlib=rb 1.1

If you engage in cognitively stimulating activities in midlife, such as reading and playing games, you can reduce dementia risk by about 26 per cent, according to research.
(Unsplash/Rawpixel), CC BY-SA

Nicole Anderson, University of Toronto

Many people do not want to think about dementia, especially if their lives have not yet been touched by it. But a total of 9.9 million people worldwide are diagnosed with dementia each year. That is one person every 3.2 seconds.

This number is growing: around 50 million people live with dementia today, and this number will rise to over 130 million worldwide by 2030.

You do not have to wait until you are 65 to take action. In the absence of treatment, we must think of ways to protect our brain health earlier. This month is Alzheimer’s Awareness month — what better time to learn how to reduce your risk of dementia, whatever your age?

In my work at Baycrest’s Rotman Research Institute, I address cognitive, health and lifestyle factors in aging. I investigate how we can maintain our brain health, while reducing the risk of dementia as we age. Currently, I’m recruiting for two clinical trials that explore the benefits of different types of cognitive training and lifestyle interventions to prevent dementia.

There are three dementia risk factors that you can’t do anything about: age, sex and genetics. But a growing body of evidence is discovering early-life, mid-life and late-life contributors to dementia risk that we can do something about — either for our own or our children’s future brain health.




Read more:
Is that ‘midlife crisis’ really Alzheimer’s disease?


Before going any further, let’s clear up some common confusion between Alzheimer’s disease and dementia. Dementia is a term to describe the declines in cognitive abilities like memory, attention, language and problem-solving that are severe enough to affect a person’s everyday functioning. Dementia can be caused by a large range of diseases, but the most common is Alzheimer’s.

Risk factors in early life

Children born at a low birth weight for their gestational age are roughly twice as likely to experience cognitive dysfunction in later life.

Many studies have also identified a link between childhood socioeconomic position or educational attainment and dementia risk. For example, low socioeconomic status in early childhood is related to late life memory decline, and one meta-analysis identified a seven per cent reduction in dementia risk for every additional year of education.

A diet high in unrefined grains, fruit, vegetables, legumes, olive oil and fish has been linked to lower dementia rates.
(Unsplash/Ja ma), CC BY

Poorer nutritional opportunities that often accompany low socioeconomic position can result in cardiovascular and metabolic conditions such as hypertension, high cholesterol and diabetes that are additional risk factors for dementia.

And low education reduces the opportunities to engage in a lifetime of intellectually stimulating occupations and leisure activities throughout life that build richer, more resilient neural networks.

Work and play hard in middle age

There is substantial evidence that people who engage in paid work that is more socially or cognitively complex have better cognitive functioning in late life and lower dementia risk. Likewise, engagement in cognitively stimulating activities in midlife, such as reading and playing games, can reduce dementia risk by about 26 per cent.

We all know that exercise is good for our physical health, and engaging in moderate to vigorous physical activity in midlife can also reduce dementia risk.

Aerobic activity not only helps us to maintain a healthy weight and keep our blood pressure down, it also promotes the growth of new neurons, particularly in the hippocampus, the area of the brain most responsible for forming new memories.

(Unsplash/Bruce Mars)

Stay social and eat well in later years

While the influences of socioeconomic position and engagement in cognitive and physical activity remain important dementia risk factors in late life, loneliness and a lack of social support emerge as late life dementia risk factors.

Seniors who are at genetic risk for developing Alzheimer’s disease are less likely to experience cognitive decline if they live with others, are less lonely and feel that they have social support.




Read more:
Will you be old and ‘unbefriended?’


You have heard that you are what you eat, right? It turns out that what we eat is important as a dementia risk factor too. Eating unrefined grains, fruit, vegetables, legumes, olive oil and fish, with low meat consumption — that is, a Mediterranean-style diet — has been linked to lower dementia rates.

Along with my Baycrest colleagues, we have put together a Brain Health Food Guide based on the available evidence.

What about Ronald Reagan?

Whenever I present this type of information, someone invariably says: “But my mother did all of these things and she still got dementia” or “What about Ronald Reagan?”

Playing games is proven to slow cognitive decline.
(Unsplash/Vlad Sargu), CC BY

My father earned a bachelor’s degree, was the global creative director of a major advertising firm, had a rich social network throughout adulthood and enjoyed 60 years of marriage. He passed away with Alzheimer’s disease. My experience with my dad further motivates my research.

Leading an engaged, healthy lifestyle is thought to increase “cognitive reserve” leading to greater brain resiliency such that people can maintain cognitive functioning in later life, despite the potential accumulation of Alzheimer’s pathology.

Thus, although all of these factors may not stop Alzheimer’s disease, they can allow people to live longer in good cognitive health. In my mind, that alone is worth a resolution to lead a healthier, more engaged lifestyle.The Conversation

Nicole Anderson, Associate Professor of Geriatric Psychiatry, University of Toronto

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Study shows dementia care program delays nursing home admissions, cuts Medicare costs

Woman in nursing home

Sima Dimitric/Flickr

 

News Release
December 2018 | UCLA – Study shows dementia care program delays nursing home admissions, cuts Medicare costs

 

New research shows that a comprehensive, coordinated care program for people with dementia and their caregivers significantly decreased the likelihood that the individuals would enter a nursing home. The study also shows that the program saved Medicare money and was cost-neutral after accounting for program costs.

The research, conducted at the UCLA Alzheimer’s and Dementia Care Program, was designed to evaluate the costs of administering the program, as well as the health care services used by program participants, including hospitalizations, emergency room visits, hospital readmissions and long-term nursing home placement.

“The findings of this study show that a health care system-based comprehensive dementia care program can keep persons with dementia in their homes and in the community without any additional cost to Medicare,” said the study’s senior author, Dr. David Reuben, Archstone Professor of Medicine and chief of the UCLA Division of Geriatrics at the David Geffen School of Medicine at UCLA.

The study was published Dec. 21 in JAMA Internal Medicine.

The research focused on the UCLA Alzheimer’s and Dementia Care Program. In the program, people with dementia and their caregivers meet with a nurse practitioner specializing in dementia care for a 90-minute in-person assessment and then receive a personalized dementia care plan that addresses the medical, mental health and social needs of both people. The nurse practitioners work collaboratively with the patient’s primary care provider and specialist physicians to implement the care plan, including adjustments as needs change over time. A total of 1,083 Medicare beneficiaries with dementia were enrolled in the program and were followed for three years. The study compared them to a similar group of patients living in the same ZIP codes who did not participate in the program.

“The most striking finding was that patients enrolled in the program reduced their risk of entering a nursing home by about 40 percent,” said lead author Dr. Lee Jennings, assistant professor at the University of Oklahoma College of Medicine. Jennings began the project while on faculty at the Geffen School and finished it after arriving at Oklahoma.

There were no differences between the two study groups in hospitalizations, emergency room visits or hospital readmissions. However, cost was another important element of the study. Participants in the program saved Medicare $601 per patient, per quarter, for a total of $2,404 a year. However, after program costs were factored in, the program was cost-neutral and might result in savings in other settings, such as at other health care systems. That was good news to the study’s authors.

“We found the study to be very exciting,” Jennings said, “because it showed that an intensive intervention can delay nursing home entry without adding costs. The intervention isn’t going to reverse dementia, but it allows us to provide high-quality care to help patients cope with the progression of this disease and stay in their homes for longer.”

Jennings added that individuals with dementia typically have not received good-quality care. “Part of the reason,” she said, “is that the care takes a significant amount of time, which primary care physicians don’t have in abundance. In addition, pharmacologic treatments for dementia are limited, which makes community resources all the more important for both patients and caregivers. However, community programs tend to be underutilized.”

The intervention featured in the study addresses those issues directly. The assessment looks not only at what the patient and caregiver need, but also at their strengths, such as financial security, family assistance and proximity to community resources. It is designed to be interdisciplinary and to address the needs of both patients and caregivers.

“This study aligns with similar studies of collaborative care models for other chronic diseases, such as heart failure,” Jennings said. “It underscores that we need to be thinking differently about how we provide care to persons with chronic illnesses, like dementia. This study shows the benefit of a collaborative care model, where nurse practitioners and physicians work together to provide comprehensive dementia care.”

My Brain Robbie campaign aims to help your kids keep their brains healthy

News Release
January 2019 | Global Brain Health Institute – My Brain Robbie animation campaign aims to help keep little brains healthy

My Brain Robbie animation campaign aims to help keep little brains healthy

My Brain Robbie, a fantastic new initiative to promote brain health among school going children, has been launched through the Pilot Awards for Global Brain Health Leaders, an initiative of the Global Brain Health Institute (GBHI), Alzheimer’s Association and Alzheimer’s Society UK. The project includes an animated video of a little brain which helps children learn about the eight steps to keeping our brains healthy, along with free educational resources for parents and teachers.

The My Brain Robbie campaign aims to fill an educational gap in the field of dementia prevention by generating a public health educational initiative for children aged 6 to 12 years. It also aims to increase global public awareness of the importance of brain health across the lifespan, rather than it being considered that brain protection strategies are an issue only for the elderly.

The video and materials bring together the latest scientific research in neurology and epidemiology which encourage early prevention and lifelong healthy lifestyles to mitigate the risk of developing chronic brain diseases including Alzheimer’s disease. Recent studies project that up to 30% of dementia may be preventable by targeting modifiable risk factors. The initiative was developed by researcher, doctor/physician and Atlantic Fellow for Equity in Brain Health at GBHI, Dr. Eleonore Bayen.

My Brain Robbie explains in child friendly language, the simple ways to keep our brain healthy using eight neuroprotective habits which connect with known modifiable risk factors for cognitive decline:

  1. ‘Learn’ touches on the role of education, cognitive stimulation and learning new things, in building cognitive reserve.
  2. ‘Be active’ describes the importance of physical activity and preventing sedentary lifestyles. Bad habits can develop as a result of spending too much time in front of electronic screens, a key issue for children, not to mention adults too!
  3. ‘Avoid head injuries’ looks at the prevention of traumatic brain injury.
  4. ‘Have a healthy diet’ refers to the “Mediterranean diet”. Another Atlantic Fellow, Claire McEvoy, among others has demonstrated the benefits of the ‘Mediterranean diet’ for brain health.
  5. ‘Avoid dangerous substances’ educates children in age-appropriate language about the dangers of tobacco and drug intake as well as excessive alcohol use.
  6. ‘Sleep well’ explains the importance of healthy sleep.
  7. ‘Take good care of your health’ looks at the importance of following medical care instructions for chronic diseases that can impact brain health, for example, hypertension.
  8. ‘Spend time with family and friends’ highlights the importance of social interaction for keeping our brains healthy.
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My Brain Robbie, which was funded by GBHI and the Alzheimer’s Association, empowers children to maintain a healthy brain throughout their lives by providing them with simple public health messages. Dr Bayen hopes that, by providing information about brain health as part of early life education, this will create a shift in perceptions, beliefs, attitudes and stigma towards diseases of the brain, particularly dementia, in this generation and beyond.

Dr Bayen said: “This pilot arrives at a perfect time in history when the fight against dementia in high, low and middle income countries has become a top priority with an urgent need for innovative actions and “out of the box” thinking in prevention and care. While education at school offers us an amazing opportunity to fight stigma as well as social and health inequities, it appears that ‘dementia prevention and brain health at school’ is currently not being addressed and this would surely improve public awareness worldwide.”

She continued: “We hope that by teaching these important healthy brain habits to a younger generation that this may, in turn, educate upwards through the generations by motivating their parents and grandparents to learn more about the subject of brain health and dementia prevention. It may also, in turn, help to create a more supportive and inclusive living environment for people with neurocognitive disability and to create a feeling of optimism in a field of neurology where there have been limited therapeutic successes. Children are often wonderful teachers for their peers, parents, grandparents, and society at large.”

Dr Bayen worked in collaboration with a wide variety of experts such as neuroscientists, medical and health professionals, education specialists, teachers, parents, communication and design experts, as well as other Atlantic Fellows and faculty from GBHI.

The videos are currently available in English and French with plans to translate these into many more languages. My Brain Robbie welcomes interest from educators, health groups, parenting communities and others in sharing this initiative with as many children as possible.

She was inspired to develop the initiative during her Atlantic Fellowship with GBHI based at the University of California, San Francisco and Trinity College Dublin. GBHI focuses on protecting the world’s aging populations from threats to brain health. Collectively with partners, GBHI aims to reduce the scale and impact of dementia. The Pilot Awards for Global Brain Health Leaders is an initiative launched by GBHI and partners, the Alzheimer’s Association and the Alzheimer’s Society UK. The awards aim to support emerging leaders in brain health protection by funding small-scale innovative activities to delay, prevent, or mitigate the impact of dementia.

“Dr Bayen’s work is a wonderful example of GBHI’s approach to attaining a global impact on dementia prevention. It engages inter-professional contributions to development on a global scale. It also recognizes that brain protection is a life-long dialogue. Her innovative strategy of teaching children who will then engage in dialogue within households to ‘educate-up’ to parents and grandparents while reducing the stigma of dementia is timely.” said Victor Valcour, Executive Director of GBHI and the Atlantic Fellows for Equity in Brain Health program.

Dr Bayen said: “As a researcher and also a physician, I feel that my duty is not only to advance pure science but also to communicate it with others in creative ways. I hope that the My Brain Robbie campaign inspires children to feel responsible for their own brain health and to become aware of others’ brain health too.”

To watch and download the videos and materials please visit www.mybrainrobbie.org

 

Further Information

Eleonore and Robbie 1.png

Dr Eleonore Bayen holds a Medical Degree with specialty training in Neurology and a PhD in Health Economics. She specializes in traumatic brain injury (TBI). She has advanced experience in architecting educational intervention programs about brain and disability for patients, family caregivers, and non-medical populations. Dr. Bayen was supported in her Atlantic Fellowship as a Fulbright grantee to the United States and was trained at the University of California, San Francisco site of GBHI in 2016. In this capacity, she was selected to be part of the first international class of the Atlantic Fellows who graduated from the Global Brain Health Institute in 2017. Bayen is currently an assistant professor in neuro-rehabilitation in Paris at Sorbonne University – La Pitié-Salpêtrière hospital.

A neuroscientist’s tips for a new year tuneup for your brain

man with fireworks
Photo by Rakicevic Nenad on Pexels.com

Pop metaphorical ‘brain bubbles’ by grounding your brain in the here and now.
Sofiaworld/Shutterstock.com

Kelly Lambert, University of Richmond

Unlike the effervescent bubbles that stream to the top of champagne flutes on New Year’s Eve, what I call brain bubbles are far from celebratory. These bubbles are metaphorical rather than physical, and they distort the stream of reality processed by our brains. Like a real estate bubble that reflects an inflated perception of home values, a brain bubble twists your perception of the world around you. And when either of these bubbles bursts, the results can be devastating.

Problems arise when distorted information results in flawed decisions that negatively affect our lives. As a neuroscientist who’s worked closely with laboratory rats for over three decades, I’ve gleaned from them a few good strategies people can use to burst brain bubbles and enhance well-being in the year ahead. Rat brains are small but have the same general areas and neurochemicals we have, so these rodents are valuable laboratory models for human behavior.

Plugging in can mean you’re untethered from reality.
Christian Fregnan/Unsplash, CC BY

Getting back down to Earth

Psychoactive drug use, aspects of privilege and poverty, psychiatric illness and, in some cases, religious and political beliefs can all create brain bubbles. Even daily excursions to the virtual world of apps, social media and cybergames sever our connections to concrete aspects of the real world and let distorting brain bubbles develop.

This is especially problematic for children’s brains that are still developing. An ongoing National Institutes of Health study suggests that two hours of screen time each day distorts language and thinking abilities in these junior digital users.

As our attention is hijacked by the closest screen while a Roomba cleans the floor and Alexa orders pizza to be delivered to the front door, what’s left for our brains to do? Sure, we likely face cognitive challenges at work each day, but human brains are built for sophisticated and complex activity – even though we’re often lulled into mindlessly scrolling through a virtual feed. In fact, a brain area often associated with reward and pleasure, the nucleus accumbens, is smaller in people who spend more time checking Facebook posts on their smartphones.

Obviously, some of these distortion-generating circumstances are out of our control. But a heightened awareness of our authentic world can move us toward a more reality-based, well-grounded brain – free of those brain bubbles.

The rats that my students and I train in our studies to physically work for coveted treats (Froot Loops cereal is a favorite) develop healthier emotional responses than the animals we call “trust-fund rats” because they’re merely given their sweet rewards. The harder-working rats have healthier stress hormone levels and engage in more sophisticated search strategies when they encounter a surprise challenge – such as when we move their expected Froot Loop rewards. They’re more persistent as they spend time trying to solve the problem, rather than quickly giving up and walking away.

So whereas one popular New Year’s resolution involves saving up to build financial capital, we can keep our brains in peak condition for the year ahead by building up experiential capital. Real-world experiences represent the best currency for our brain circuits, providing neural security for our future decisions in the coming year. Spending time engaged in hobbies such as knitting or gardening, for example, with complex movements and rich sensory experiences, provides a valuable yield for our brains.

Looking forward to it can be just as good as the experience.
Brooke Lark/Unsplash, CC BY

Savor the anticipation

When the calendar flips to a new year, it’s common to reflect on the past and look to the future. According to the neuroscience literature, this anticipation could be one of the most pleasurable – and healthy – tasks our brains engage in all year long.

Dopamine is the poster neurotransmitter for the cognitive endeavor of anticipating. Traditionally known for its role in pleasure, this neurochemical system can be hijacked by psychoactive drugs such as cocaine that serve as potent creators of reality-distorting brain bubbles.

Rodent research provides fascinating insights here, however. Researchers use sophisticated techniques to measure dopamine activity as rats press laboratory levers that reward them with drugs. Surprisingly, this neurochemical system surges when the animal merely anticipates taking the drug as it approaches the drug lever, as well as when the drug is actually infused into the brain.

Anticipating a new start and a new year may be a scaled-down version of approaching the experimental lever for a hit of cocaine – a legal and healthy dopamine dose in this case. You can try to keep this emotional high going through the year by amping up the anticipation in your daily life: Focus more on delayed than immediate gratification. Buying and planning for experiences is more satisfying than material purchases. Mapping out a menu, shopping for ingredients and cooking a meal provides more dopamine time – and brain-engaging behaviors – than nuking a frozen meal and eating it three minutes later.

Rats in the lab suggest active minds are better able to overcome stress and surprise adversity.
Kelly Lambert, CC BY-ND

Seize the reins of your stress

Another way to enhance our well-being through the year is to gain some sense of control over the stress in our lives. Real-time and authentic interactions with the environment can help us gain a sense of control over the inevitable uncertainty and unpredictability we face each day.

I see evidence of this in the lab. When I furnish my rats’ housing with natural elements such as dirt, hollowed-out logs and rocks, they’re busier and less likely to sit around the edge of the cage than animals in boring empty cages. After building their experiential capital, these enriched rats have healthier stress and resilience hormone profiles and engage in bolder behaviors, such as diving to the bottom of swim tanks instead of staying on the top doing their best impression of a dog paddle. As I watch these animals in various tasks, they appear to be gaining control over the challenges they encounter.

Perhaps this is why retired U.S. four-star admiral William McRaven emphasized simple life strategies in his 2014 University of Texas commencement speech, declaring that “if you want to change your life and maybe the world, start off by making your bed.” Then, even if you have a terrible day, you will come home to a made bed, evidence that you had a positive impact in at least one area of your life that day.

And, considering that over 70 percent of the brain’s nerve cells are in the cerebellum, which is involved in movement coordination, any activity that gets us up and moving – whether household chores or hitting the gym – engages the brain in healthy ways.

Taking time to connect in the kitchen is one good way to ground your brain.
Amber Maxwell Boydell/Unsplash, CC BY

Starting your brain’s year off right

Lessons from the laboratory rats also provide potential explanations for some of my own personal favorite New Year’s Day traditions – including the mundane tasks of cooking a familiar southern meal, cleaning my closet and watching HGTV’s Dream House giveaway with my family while we all declare what we would do if we won the beautiful house. Move in? Sell it? Make it an Airbnb rental?

Thinking like a neuroscientist, I know that cooking and cleaning are active endeavors with clear outcomes that allow me to gain a small sense of control, decreasing stress hormones. Playfully anticipating winning a new home taps into that feel-good dopamine system as we contemplate more serious options for the new year. And, perhaps the best neurochemical hit of all is the spike in oxytocin, the neurochemical involved in positive social connections, as I spend time with loved ones.

Although it’s common to turn to pharmaceuticals to lift our emotions and improve our mental health, the emotional benefits of many New Year’s traditions remind me that basic responses can serve as what I call “behaviorceuticals” that enhance well-being. New Year’s resolutions may take the form of New Year’s Rx’s as we consider healthy lifestyle choices for the coming year: Shrink those distorting brain bubbles and build realistic connections to enrich life’s simple pleasures.The Conversation

Kelly Lambert, Professor of Behavioral Neuroscience, University of Richmond

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Top 10 secrets about stress and health

The strain of life — from everyday conflicts to major losses — can stretch our well-being to the breaking point. Here’s what scientists know, and still don’t know, about the stress-illness connection.

08.30.2018

It’s no secret that stress is bad for your health.

Everybody knows that “life stress events” — things like loss of a job, death of a loved one and getting divorced (or married) raise the risk of getting sick.

All sorts of other life events also generate stress, with possible negative health effects ranging from catching a cold to major depression to a fatal heart attack.

Of course, knowing about the link between stress and sickness just gives you something else to worry about, adding even more stress. If you value your health, perhaps you should stop reading now.

On second thought, don’t. Much of the lore about stressful events impairing health is certainly true, but some research is reassuring. There are some secrets about the stress-disease connection that aren’t all bad.

If you’ve read the psychological, psychiatric and medical scientific literature over the last several decades, you might already be aware of these “secrets.” If not, they’ve been nicely summarized in a paper to appear in the next issue of Annual Review of Psychology, in which Sheldon Cohen, Michael L.M. Murphy and Aric A. Prather analyze (in no particular order) what they call the “Ten surprising facts about stressful life events and disease risk.”

10. Experts disagree about what counts as stressful.

Nobody disputes that certain events inflict severe psychological (and physiological) stress. Death of a spouse, getting diagnosed with a terminal illness and (ahem) separation of children from parents are indisputably “major stressful life events.” But no clear rules have been established to define what features place an event in that category (which makes stress research complicated, with often ambiguous results).

Some researchers hold that stress magnitude hinges on how much “adaptation” is required to cope with it (which is why marriage can be considered especially stressful). A second theory gauges stressfulness as the amount of threat or harm an event poses. Some experts view stress as a mismatch between demands and resources. (If you have the resources — say, money — to address and control a demanding situation, it’s less stressful; if your boss expects you to complete a three-person project all by yourself under an impossible deadline, you’re stressed.) A fourth view regards “interruption of goals” as the prime feature of a life stress event; diabolically, one of the goals most commonly interrupted is the goal to be psychologically well.

These theories about stress-event criteria aren’t mutually exclusive, of course. “There is obvious overlap among these approaches,” Cohen and colleagues write. On the whole, though, they suggest the “threat or harm” perspective is the most commonly accepted.

Examples of recent stressful life events (major and minor) psychologists may ask about to gauge a person’s stress level. These include everything from the death of a spouse to taking on a mortgage to getting a speeding ticket.

9. Stress can affect a long list of diseases.

Depression and heart disease are commonly associated with stressful events, but stress’s influence extends to other health problems as well. Many, perhaps even most, diseases can be linked to life stress in some way. Stress can boost anxiety, mess with your hormones and discourage healthy practices such as exercising and eating well. At the same time stress can instigate bad behaviors such as smoking and drinking. All these responses can have negative impacts on important organs (brain, heart, liver), possibly resulting in multiple health problems either by triggering the onset or accelerating the progression of a disease. Stress events can reduce resistance to infections, and even cancer may be linked to stress. But the evidence on cancer is less clear. Stress might influence the development of cancer, but the strongest research shows that a more likely effect of stress is reducing cancer survival rates rather than initiating cancer onset.

8. Just being stressed doesn’t mean you’ll get sick.

There’s no doubt that trauma and stressful events can harm your health. But not always. “On the whole,” Cohen and colleagues write, “most people who experience stressful events do not get sick.” Experiments exposing stressed and nonstressed people to a common cold virus found that more of the stressed people caught the cold than those in the nonstressed group, but nevertheless half the members of the stressed group remained healthy. Even depression is not an inevitable effect of major life stress; some people are more resilient than others. Positive self-image and sense of control are signs of resilience; negative attitude and excessive rumination tip the scales toward depression.

7. Stressful events do not strike at random.

Apart from the relatively rare natural disasters, fatal accidents and a few other nasty exceptions, stressful events are not equal-opportunity assailants. Your personal traits and situation and the circumstances in which you live make you more or less at risk for life stress. Neighborhoods with low socioeconomic status are sites of higher-than-average levels of stressful events, and people with low personal socioeconomic status have more risk of encountering violence, death of a child and divorce. Even personality can boost your stress risk (neurotic, unconscientious and disagreeable people are more likely to get divorced, for some reason). One study found that “individuals characterized by negative attributional style” (i.e., jerks) encounter more “interpersonal conflicts,” raising the risk of stressful events. Furthermore, one stressful event — such as loss of a job — can lead to others (such as loss of income, moving or divorce).

Evidence is strong that stressful events make a disease you already have worse.

6. Disease might come before the stress.

While some evidence supports the notion that stress can initiate various diseases, this may not be the case in truly healthy people. “Rather, events may influence risk for disease by either suppressing the body’s ability to fight invading pathogens or exacerbating the progression of ongoing premorbid processes,” Cohen and colleagues write. What looks like a disease triggered by stress “may actually be stressor-triggered progression of previously unidentified disease.” So in some cases stress might not be responsible for the disease itself, just for making a previously unnoticed disease worse.

5. Some stressful events are more powerful than others.

The magnitude of a stressful event’s impact depends a lot on the nature of the stress. Most damaging, research indicates, are “experiences that threaten an individual’s sense of competence or status,” striking at a person’s “core identity.” Loss of status, losing a job and interpersonal conflict with spouses or close friends can all exacerbate health problems, from raising the risk of depression to worsening high blood pressure and reducing resistance to respiratory infection.

4. Chronic stress is worse than acute stress, usually.

It’s not necessarily obvious that chronic, long-lasting or recurrent stress is worse than one-shot stress events. It may be possible to adapt to ongoing stress — once you’re used to it, maybe it won’t bother you so much (or harm your health). On the other hand, ongoing stress may be worse for health because it’s always there, ready to attack whenever your body is vulnerable for some other reason. Overall, chronic stress is probably worse, as it may have a persistent detrimental effect on the body’s disease-fighting immune system. Acute stress, like single traumatic events, may trigger a dramatic worsening of an existing condition, such as heart disease. In that case, a sufficiently powerful stress event can induce a fatal heart attack.

3. Many stress events are worse than fewer, maybe.

Effects from stressful events may add up over time; simple checklists of how many stressful events a person has experienced over the past year show that experiencing more events predicts worse health. But it’s too complicated to say exactly why that is, or even if it is really generally true. (The checklist method of gathering data might be faulty.) In fact, if a single event is strong enough to increase health risk substantially, additional events don’t necessarily increase that risk further. For that matter, it isn’t clear how events should be counted; a divorce followed by changing residences and reduced income might count as one event or three, Cohen and colleagues point out. And it may not be the number of events but rather the number of “life domains” in which you’re experiencing stress that’s more important. (Job, home life, medical issues and financial issues all represent different domains in which stress may occur.)

Data from a 1998 study shows that among people reporting an enduring stressful life event of one month or more (total: 75), 49.3% (37 people) came down with a cold after exposure to a rhinovirus, while 50.7% (38 people) remained healthy. In those who reported no stressful life events (total: 201), 35.8% (72 people) developed a cold, while 64.2% (129 people) did not.

2. The effect of stress events depends on where you are in life.

Just as some events are stressful, so are some nonevents — things that don’t happen when they’re supposed to in a typical course of life. People generally expect to graduate from school (high school or maybe college), get a job, get married, have kids and then retire. Failure to graduate, inability to get a job or rejection of marriage proposals can all be very stressful during the time of life when success at those things is expected. It may also be that different times of life are more susceptible than others to the ill effects of stress. Trauma in childhood, for instance, has been linked to higher risk of chronic diseases much later in life. Such trauma may induce long-lasting biological changes that contribute to disease in later years. In addition, “adversity during childhood may set an individual on a trajectory to being exposed to more stressors over the life course,” Cohen and coauthors write.

1. Stress doesn’t affect men and women equally.

Men and women respond differently to stress, both in their behavior and their physiological response. And women are apparently exposed more frequently to stressful experiences than men are. Partly that may be because “men tend to only report stressful events that occur directly to them” while women consider themselves stressed also when the actual event happens to someone close to them. Men and women may also differ in their vulnerability to stress-induced illness. Women seem more prone to stress-related depression, for instance.

Toll of stress on disease

All these “secrets” sketch a still incomplete picture of the stress-illness connection. Some things are clear: Evidence is strong that stressful events make a disease you already have worse, but the research is iffy about whether stress can make you sick to begin with. There are clues about how stressful events exacerbate disease — by altering your biology, your mood and your behavior. Chronic, ongoing stress (like working for a psychopath boss) generates a more general susceptibility to the kinds of physiological and emotional changes that promote disease, while acute immediate stressful events can be effective triggers for turning underlying conditions like cardiovascular disease into heart attacks.

Still many questions about the stress-disease relationship remain unanswered. Experts don’t even know exactly why stressful events are stressful. And evidence is meager on whether particular types of stress are especially likely to promote specific diseases. Much remains to be learned about how a stress event’s effects vary with your stage in life.

Nailing down those details remains a major research challenge. It’s not easy for researchers to answer all these questions, because the obvious experiments would be somewhat unethical. You’d have to give one big group of people a bad job with a bad boss and then make sure bad things happened to them all the time, while rigging conditions for another group to enjoy stress-free luxury. It would be kind of like The Truman Show, only with manipulating enough characters to get statistical significance.

This article originally appeared in Knowable Magazine, an independent journalistic endeavor from Annual Reviews. Sign up for the newsletter.

Knowable Magazine | Annual Reviews

 

Most caregivers of people with dementia are family members, and they need help

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Daily tasks such as cooking and cleaning are out of the reach of many seniors.
Nancy Beijersbergen/Shutterstock.com

Alan Stevens, Texas A&M University ; Carole White, University of Texas at Austin; Marcia G. Ory, Texas A&M University , and Sandhya Sanghi, Texas A&M University

Family care of an older adult has emerged as an essential element of the U.S. health care system, with 83 percent of long-term care provided to older adults coming from family members or other unpaid helpers. As the population of older adults grows, so too does the expectation of family care for persons living with dementia.

We have engaged in decades of research, documenting the impact of dementia caregiving on the health and well-being of the caregiver. We have also conducted research to create evidence-based interventions that can be defined as structured programs with positive results that have been scientifically proved through clinical trials.

We have learned much from family caregivers who report that the amount and type of care expected of them is growing, and have concluded that caregiving demands should be matched by community-based support systems. We have advocated for the adoption of one evidence-based intervention, called REACH II (Resources for Enhancing Alzheimer’s Caregiver Health II), which is designed to help caregivers manage daily care into health care and community-based organizations.

Challenges to family caregiving

The toll of caregiving can be financial as well as physical.
nuiza11/Shutterstock.com

Family caregivers experience multiple challenges daily when caring for a person with dementia, whose care needs steadily increase as cognitive abilities decline. Care burdens can have high physical, emotional and financial costs. An overview, or a meta-analysis, of 84 studies found that caregivers experienced more depression and stress than non-caregivers.

More recently, AARP reported that more than one in three, or 36 percent to be specific, of family caregivers who were not currently in the labor force said they retired early or quit their jobs because of family caregiving concerns.

Despite the critical role that family caregivers play, support programs based on evidence based interventions are not widely available. The National Academies report Families Caring for an Aging America concluded that “few of the nation’s millions of family caregivers of older adults have access to evidence-based interventions.” Moreover, caregivers are often marginalized or ignored by formal health care providers of the person with dementia.

Supporting family caregivers

Interventions that combine education about dementia and advice about specific “do’s and don’t’s” of dementia care with guided training and practice appear to be of greatest value to family caregivers. This approach of providing multiple types of support and training allows the intervention to address the vast spectrum of challenges faced by caregivers and allows support and training activities to be tailored to the unique needs of each family.

While scientific research has demonstrated the value of providing education, skills training and support to family caregivers, we have found in our research that health care and social service providers do not routinely provide support programs based on evidence-based interventions. Thus, for the vast majority of family caregivers, caregiving support services remain extremely fragmented if not elusive. Family caregivers are often left alone to provide care that can be complicated and exhausting 24/7.

From our experience, the lack of caregiving support services that are evidence-based is not solely driven by neglect from health care and social support service providers. Rather, existing evidence-based interventions require dedicated personnel who must be trained to deliver the intervention, yet the delivery of the intervention are not covered by Medicare and other third-party payers.

Additionally, family caregivers are often either unaware of existing services, or they are unable to participate due to emotional stresses, time commitments or scheduling concerns. Finally, there are systemic barriers associated with the failure to translate research into practice, resulting in limited program implementation by community-based agencies that provide care to older adults and assistance to dementia caregivers.

Without care for the caregiver, the system crumbles

Love for a family member is often not enough to meet the tough demands of caregiving.
Robert Kneschke/Shutterstock.com

We believe that forging strong partnerships between health care systems that frequently see patients with dementia and the community-based organizations that provide ongoing supportive services that help caregivers develop skills to deal with negative behaviors associated with memory loss (e.g., agitation or wandering) is necessary to bridge the gap in caregiving services.

Leveraging technology, such as offering online information and support to increase educational opportunities and perhaps even automating some aspects of intervention delivery, will help ensure access to services to the widest possible audience. Working directly with employers to provide proven services to the workforce could mitigate the negative economic impact of premature employment reduction.

While changes in the health care system and workplace are important, we believe that all sectors of our society need to more formally recognize family caregiver services. Such an approach can change attitudes, reduce stigma and foster caring and supportive behavior toward those living with dementia. One example is the Dementia Friendly America initiative, a national effort to support and serve those who are living with dementia, their caregivers and families.

Communities are also taking action by leveraging tailored resources in business, community-based services and supports, faith communities, health care communities, legal and financial services, local government and residential settings.

While improvements are needed in all community sectors recognized by the Dementia Friendly America model, this is especially so in the health care sector. Family caregivers are the source of greatest impact on the health of a person living with dementia, yet are often excluded in conversations with the person’s health care providers. Health care providers should be encouraged to document the role of the family caregiver in the a patient’s electronic health record.

Also, health care providers should make every attempt to involve the family caregiver in all health care interactions, especially in discharge planning after a hospital stay. As a sector, health care systems can also facilitate a dementia friendly approach by directing families to community-based social support services to address common challenges such as getting medications and transportation to health care appointments.

There is a role for higher education as well. Colleges and universities could help prepare a dementia-friendly health care work force to meet the needs of the growing numbers of persons with dementia, estimated to nearly triple by midcentury with an American being diagnosed with dementia every 33 seconds. Attention to dementia-friendly practices such as differentiating dementia from normal aging, early investigation of dementia symptoms by a health care professional and basic training in how to communicate with a person with dementia should be encouraged across the social and health disciplines.

Our care system depends heavily on family caregivers. If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs.The Conversation

Alan Stevens, Professor of Medicine; Director, Center for Applied Health Research, Texas A&M University ; Carole White, Professor and Nancy Smith Hurd Chair in Geriatric Nursing and Aging Studies, University of Texas at Austin; Marcia G. Ory, Regents and Distinguished Professor, Associate Vice President for Strategic Partnerships and Initiatives, Texas A&M University , and Sandhya Sanghi, Assistant Investigator, Texas A&M University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

What is ‘quality’ in aged care? Here’s what studies (and our readers) say

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Social connections help retain a sense of purpose in older age.
from shutterstock.com

Joseph Ibrahim, Monash University

A challenge facing the recently announced Royal Commission into Aged Care Quality and Safety will be to define “quality”.

Everyone has their own idea of what quality of care and quality of life in residential aged care may look like. The Conversation asked readers how they would want a loved one to be cared for in a residential aged care facility. What they said was similar to what surveys around the world have consistently found.

Characteristics that often appear as the basis for good quality of life include living in a home-like rather than an institutionalised environment, social connection and access to the outdoors. Good quality of care tends to focus on providing assistance that is timely and appropriate to individual needs.




Read more:
Australia’s residential aged care facilities are getting bigger and less home-like


A bleak view of aged care

A mature judgment to determine good quality requires us to recognise that many people have an instinctive and distressingly bleak view of ageing, disability, dementia and death. Some people express this as death being preferable to living in aged care, as the tweet below shows.


Twitter

This doesn’t necessarily reflect an objective assessment of the actual care being delivered in residential facilities, but it does speak to the fear of losing independence, autonomy and identity.

In a survey of patients with serious illnesses hospitalised in the US, around 30% of respondents considered life in a nursing home to be a worse fate than death. Bowel and bladder incontinence and being confused all the time were two other states considered worse than death.

Aged care facilities will be the final residence for most before they die. This means the residents’ sense of futility and the notion one is simply waiting to die can and should be addressed.




Read more:
How our residential aged-care system doesn’t care about older people’s emotional needs


Loose-leaf tea can make someone feel at home.
Matt Seymour/Unsplash

Our reason for being is usually expressed through social connections. This a recurring theme for residents who define quality of care as whether or not residents have friendships and are allowed reciprocity with their caregivers.

A systematic review that drew together a number of studies of quality in aged care found residents were most concerned about the lack of individual autonomy and difficulty in forming relationships when in care.

Good staff

The need for positive social connections for residents extends to the relationships between staff and families. Achieving this requires staff with a positive attitude who work to build trust and involve family in their loved one’s care. They must also engage on issues that have meaning to the individuals.

Good staff should be both technically proficient and, perhaps more importantly, good with people.

Dianne Wintle comment.
Facebook screenshot

Idyllic, or the way it should be?

A home-like setting – which may include having a pet and enjoying time in nature, as the Tweet below describes – may seem idyllic. However, more contemporary models of care are moving towards smaller home-like environments that accommodate fewer people and are more like a household than a large institution.


Twitter

The ability to relate and personalise care to a small group of 10-12 residents is surely easier than catering to 30-60 residents. Some studies in the US have shown residents in such smaller units have an enhanced quality of life that doesn’t compromise clinical care or running costs.




Read more:
Caring for elderly Australians in a home-like setting can reduce hospital visits


This cluster-style housing still has limitations that need to be addressed. These include selecting residents who are suitable together and catering for the changing clinical and care needs of each individual.

Pets and the outdoors

Research into the value of pets in aged care has largely focused on the benefits to people living with dementia. Introducing domestic animals, typically dogs, has been shown to have positive effects on social behaviours, physical activity and overall quality of life for residents.

Pets improve quality of life for people living with dementia.
from shutterstock.com

Similarly, providing accommodation where the physical environment and building promote engagement in a range of indoor and outdoor activities, and allow for both private and community spaces, is associated with a better quality of life.

Good food

Another major determinant of quality of life in residential aged care is the quality of food. This becomes even more important as people age. Providing high-quality food and enriching meal times is more challenging as many diseases such as dementia and stroke affect older people’s dentition and swallowing.


Twitter

Aged care services need proactive and innovative approaches to overcome these deficits and better promote general health.

A key feature often overlooked is the cultural significance of food. Providing traditional foods to residents strengthens their feeling of belonging and identity, helping them hold on to their cultural roots and enhance their quality of life.

Safety, dignity, respect and choice


Twitter

While the focus is often on preventing abuse, neglect and restrictive practices in aged care, the absence of these harmful events doesn’t equate to a positive culture. Residents want and have a right to feel safe, valued, respected and able to express and exercise choice. Positive observation of these rights is essential for quality of life.

Clinical and personal care

Time is a factor in aged care, as staff often don’t have enough time to spend with each resident. A recent ABC Four Corners investigation into quality in aged care found personal care assistants had only six minutes to help residents shower and get dressed. No wonder, then, that staff often don’t have the personal time to be able to spend with residents who need life to be a little slower, as the Facebook comment below shows.

Jo Art comment.
Facebook

Clinical care is another important aspect of quality aged care. A resident cannot enjoy a good quality of life if their often multiple and chronic conditions such as diabetes, heart failure and arthritis are poorly managed by their doctors and nurses.




Read more:
Australia’s aged care residents are very sick, yet the government doesn’t prioritise medical care


Residents in aged care are the same as those who live in the community. They are people with the same needs and wants. The only difference is they need the community to give the time, effort and thought to achieve a better life.The Conversation

Joseph Ibrahim, Professor, Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Exercise May Lessen Risk of Falling for Older Adults who have Alzheimer’s Disease and Mental Health Challenges

active bikes cyclist elderly
Photo by Public Domain Pictures on Pexels.com

News Release
October 2018 | USA – Exercise May Lessen Risk of Falling for Older Adults who have Alzheimer’s Disease and Mental Health Challenges

Journal of the American Geriatrics Society Research Summary

Alzheimer’s disease (AD) is a brain disease that causes changes that kill brain cells. AD is a type of dementia, which causes memory loss and problems with thinking and making decisions. People with AD and other forms of dementia have difficulties performing the daily activities others might consider routine.

Dementia takes a toll on those who live with it—and it also places a burden on caregivers. Along with problems connected to memory, language, and decision-making, dementia can cause neuropsychiatric symptoms, such as depression, anxiety, changes in mood, increased irritability, and changes in personality and behavior. People who have AD/dementia also have twice the risk for falls compared to people without dementia. About 60 percent of older adults with dementia fall each year.

Researchers suggest that having neuropsychiatric symptoms might predict whether an older person with AD/dementia is more likely to have a fall. We also know that exercise can reduce the number of falls in older adults with dementia. However, we don’t know very much about how neuropsychiatric symptoms may increase the risk of falls, and we know even less about how exercise may reduce the risk of falls for people with dementia and neuropsychiatric symptoms. A research team decided to explore whether exercise could reduce the risk of falling among community-dwelling people with AD who also had neuropsychiatric symptoms.

To learn more, the researchers reviewed a study that investigated the effects of an exercise program for older adults with AD (the FINALEX trial). The study included a range of people living with different stages of AD/dementia and with neuropsychiatric symptoms. Their findings were published in the Journal of the American Geriatrics Society.

The original FINALEX study examined and compared older adults who had home- or group-based exercise training with people who didn’t exercise but who received regular care. The researchers learned that the people who exercised had a lower risk for falls than those who didn’t exercise. There was also a higher risk for falls among those who had lower scores on psychological tests and who didn’t exercise.

man running at marathon event
Photo by Luka Siemionov on Pexels.com

This study revealed that people with AD/dementia and neuropsychiatric symptoms such as depression and anxiety have a higher risk for falls. Exercise can reduce the risk of falling for older adults with these symptoms. Further studies are needed to confirm these results.

This summary is from “Relationship of neuropsychiatric symptoms with falls in Alzheimer’s disease—Does exercise modify the risk?” It appears online ahead of print in the Journal of the American Geriatrics Society. The study authors are Hanna-Maria Roitto, MD; Hannu Kautiainen, biostatistician; Hannareeta Öhman, MD; Niina Savikko, RN, PhD; Timo E. Strandberg MD, PhD; Minna Raivio MD, PhD; Marja-Liisa Laakkonen MD, PhD; and Kaisu H. Pitkälä, MD, PhD.

This entry was posted in JAGS Research Summaries and tagged Alzhe, dementia, exercise, physical activity by HIA Guest Blog.

Doubting a diagnosis of dementia

A brilliant article by Kate Swaffer and a must read. I have been saying this over and over again, having worked in imaging for a short while. MRI and procedures for scans are stressful and distressing. And the whole process of diagnosis is just a mind field for everyone.

In the last few weeks, there have been a few articles, blogs or tweets on the impact of others publicly doubting a persons diagnosis of dementia, which I am highlighting here for your weekend reading! One tweet by a professional last week claimed with certainty some people don’t have dementia. Whilst it didn’t name anyone, it was disturbing. I’m reasonably certain, in the same way people rally around someone diagnosed with cancer, they also never doubt the diagnosis, including when the person ‘does better than expected‘.

People with cancer (or any other ‘mostly invisible’ diseases) are never diagnosed or doubted publicly, including by others after a conversation, presentation or after reading a book or blog. I can never tell who in a room has heart disease, diabetes, and in the early stages of conditions such as multiple sclerosis, and even Parkinson’s. It is the same for people with dementia as…

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How to help people with dementia retain the power of choice

How to help people with dementia retain the power of choice

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Which pair?
Monkey Business Images/Shutterstock

Rebecca Sharp, Bangor University and Zoe Lucock, Bangor University

Deterioration in the ability to produce complex speech or understand what people are asking, can make it difficult for people with dementia to make choices in conventional ways. It can be simple things like deciding which clothes to wear, or what to have for dinner. But when a person is in the more advanced stages of dementia, and may not be able to speak at all, it can be difficult for those caring for them to work out what their preferences would be.

To help the estimated 280,000 people with dementia who are living in UK care homes, family members are often asked what their loved ones would prefer and notes are made by staff. But we know that people’s preferences can change, sometimes on a daily basis, and are hard to predict even by people who know them really well.

Take the example of Mrs Jones. Care workers know that she likes both tea and coffee, but that she prefers tea. If Mrs Jones finds it difficult to tell them what she wants, how will they know that today is the day that Mrs Jones fancies a coffee?

Behavioural researchers have found that one way to figure out what a person would like is to measure how they respond when provided with different options at the same time. For example, to find out whether a person prefers a biscuit or a scone, the two treats are presented together for the person to choose.

As the person making the choice is unable to speak, physical behaviours such as reaching, touching, and picking up the item are watched to find out which they would like. Studies which use this method are usually done with people with dementia in their care home, and tailored to the individual taking part. While the researchers can find out what works best, it also means that people with dementia benefit directly from taking part in the study. Staff are also shown how to find out preferences – leading to immediate improvements in care.

Though it seems like a simple thing to put into practice, this “choice” method is not currently part of the UK care system. However, we have been testing to see whether it could be used in all care homes, to give everyone with dementia more choice in a place where it has traditionally been limited. By observing what people do rather than what they say, care staff can get a more objective idea of what people like, measure their preferences daily, track how they change, and – most importantly – give people with dementia and communication issues more of a voice in their daily lives.

shutterstock.
Photographee.eu/Shutterstock

Our work forms part of the first UK project of its kind in the field of behavioural gerontology. The preferences research is part of a series of studies all focused on using behaviour analysis to help improve the quality of life of people with dementia. In addition, students on Bangor University’s applied behaviour analysis programme are trained to specialise in this approach with older adults.

Though the project itself is due to go on for another year, we have already confirmed previous findings from US-based care home studies which showed that people with dementia prefer activities over food items when given a choice between them. For example, we found that people chose activities such as jigsaws, crosswords, and crochet over treats such as custard tarts and pork pies.

This might be because one risk for people with dementia in long-term care is that they can spend a lot of time unengaged. It can be difficult to find lots of meaningful activities for care settings, and opportunities for conversation can be reduced. So activities become more valuable because they give people something to do and to talk about with other people, while food might become less valuable due to sensory changes associated with dementia such as changes in ability to taste and swallow.

Putting this into practice, we now know that if a person with dementia is to be given food and activity choices, they should be done separately – rather than at the same time, like the biscuit and scone example – as preference for taking part in an activity might overshadow a food choice. In the long run, this means that staff don’t learn what people’s food preferences are, too.

For the next stage of our research, we are going to work with people with developmental disabilities (for example, Down Syndrome) who develop dementia. People with developmental disabilities often develop dementia at a younger age, and are more likely to develop it than those who do not have a developmental disability. They are often diagnosed late, too, due to “diagnostic overshadowing”, where changes in behaviour are attributed to their disability rather than dementia.

Previous research has found that people with developmental disabilities will often choose food over activities when a choice between the two is offered (the opposite of people with dementia). However, no one has yet looked at whether this preference shifts when people with developmental disabilities develop dementia. If we know how preferences change, we can ensure that care settings tailor their support.

We all value having choices, and our work is focused on evaluating and developing ways to ensure that people with dementia and developmental disabilities continue to be offered choices, even in the smallest of ways.The Conversation

Rebecca Sharp, Senior Lecturer in Psychology, Bangor University and Zoe Lucock, PhD Researcher, Bangor University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Australia’s residential aged care facilities are getting bigger and less home-like

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Residential aged care facilities should be more like a home and less like a hospital.
from shutterstock.com

Ralph Hampson, University of Melbourne

Most older people want to stay at home as long as they can. When this is no longer possible, they move into residential aged care facilities, which become their home. But Australia’s care facilities for the aged are growing in size and becoming less home-like.

In 2010–11, 54% of residential aged care facilities in major Australian cities had more than 60 places, and the size of the average facility is growing.

Today, more than 200,000 Australians live or stay in residential aged care on any given day. There are around 2,672 such facilities in Australia. This equates to an average of around 75 beds per facility.

Large institutions for people with disability and mental illness, as well as orphaned children, were once commonplace. But now – influenced by the 1960s deinstitutionalisation movement – these have been closed down and replaced with smaller community-based services. In the case of aged care, Australia has gone the opposite way.




Read more:
How our residential aged-care system doesn’t care about older people’s emotional needs


Why is smaller better?

Evidence shows that aged care residents have better well-being when given opportunities for self-determination and independence. Internationally, there has been a move towards smaller living units where the design encourages this. These facilities feel more like a home than a hospital.

The World Health Organisation has indicated that such models of care, where residents are also involved in running the facility, have advantages for older people, families, volunteers and care workers, and improve the quality of care.

In the US, the Green House Project has built more than 185 homes with around 10-12 residents in each. Studies show Green House residents’ enhanced quality of life doesn’t compromise clinical care or running costs.

Older people have a better quality of life if they can be involved in outdoor activities.
from shutterstock.com

Around 50% of residents living in aged care facilities have dementia. And research has shown that a higher quality of life for those with dementia is associated with buildings that help them engage with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities.

In June 2018, an Australian study found residents with dementia in aged-care facilities that provided a home-like model of care had far better quality of life and fewer hospitalisations than those in more standard facilities. The home-like facilities had up to 15 residents.

The study also found the cost of caring for older people in the smaller facilities was no higher, and in some cases lower, than in institutionalised facilities.




Read more:
Caring for elderly Australians in a home-like setting can reduce hospital visits


There are some moves in Australia towards smaller aged care services. For example, aged care provider Wintringham has developed services with smaller facilities for older people who are homeless. Wintringham received the Building and Social Housing Foundation World Habitat Award 1997 for Wintringham Port Melbourne Hostel. Its innovative design actively worked against the institutional model.

Bigger and less home-like

Historically, nursing homes in Australia were small facilities, with around 30 beds each, often run as family businesses or provided by not-for-profit organisations. Between 2002 and 2013 the proportion of facilities with more than 60 beds doubled to 48.6%. Financial viability rather than quality of care drove the increase in size.

Today, around 45% of facilities are operated by the private for-profit sector, 40% by religious and charitable organisations, 13% by community-based organisations, 3% by state and territory governments, and less than 1% by local governments.




Read more:
It’s hard to make money in aged care, and that’s part of the problem


In 2016, the Australian Institute of Health and Welfare (AIHW) reported that residential care services run by government organisations were more likely to be in small facilities. One-fifth (22%) of places in these facilities are in services with 20 or fewer places. Almost half (49%) of privately-run residential places are found in services with more than 100 places.

All of this means that more older Australians are living out their last days in an institutional environment.

Once larger facilities become the norm, it will be difficult to undo. Capital infrastructure is built to have an average 40-year life, which will lock in the institutional model of aged care.

The built environment matters. The royal commission provides an opportunity to fundamentally critique the institutional model.The Conversation

Ralph Hampson, Senior Lecturer, Health and Ageing, University of Melbourne

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Study gives new insight into how the brain perceives places

News Release
October 2018 | USA – Study gives new insight into how the brain perceives places

fig1_stimuli

Example of an image from the fMRI study. Participants were asked to imagine they were standing in the room and indicate through a button press whether it was a bedroom, a kitchen or a living room. On separate trials, they were asked to imagine that they were walking on the continuous path through the room and indicate which door they could leave through. (Image by Andrew Persichetti)

By Carol Clark

Nearly 30 years ago, scientists demonstrated that visually recognizing an object, such as a cup, and performing a visually guided action, such as picking the cup up, involved distinct neural processes, located in different areas of the brain. A new study shows that the same is true for how the brain perceives our environment — it has two distinct systems, one for recognizing a place and another for navigating through it.

The Journal of Neuroscience published the finding by researchers at Emory University, based on experiments using functional magnetic resonance imaging (fMRI). The results showed that the brain’s parahippocampal place area responded more strongly to a scene recognition task while the occipital place area responded more to a navigation task.

The work could have important implications for helping people to recover from brain injuries and for the design of computer vision systems, such as self-driving cars.

“It’s thrilling to learn what different regions of the brain are doing,” says Daniel Dilks, senior author of the study and an assistant professor of psychology at Emory. “Learning how the mind makes sense of all the information that we’re bombarded with every day is one of the greatest of intellectual quests. It’s about understanding what makes us human.”

Entering a place and recognizing where you are — whether it’s a kitchen, a bedroom or a garden — occurs instantaneously and you can almost simultaneously make your way around it.

“People assumed that these two brain functions were jumbled up together — that recognizing a place was always navigationally relevant,” says first author Andrew Persichetti, who worked on the study as an Emory graduate student. “We showed that’s not true, that our brain has dedicated and dissociable systems for each of these tasks. It’s remarkable that the closer we look at the brain the more specialized systems we find — our brains have evolved to be super efficient.”

Persichetti, who has since received his PhD from Emory and now works at the National Institute of Mental Health, explains that an interest in philosophy led him to neuroscience. “Immanuel Kant made it clear that if we can’t understand the structure of our mind, the structure of knowledge, we’re not going to fully understand ourselves, or even a lot about the outside world, because that gets filtered through our perceptual and cognitive processes,” he says.

The Dilks lab focuses on mapping how the visual cortex is functionally organized. “We are visual creatures and the majority of the brain is related to processing visual information, one way or another,” Dilks says.

Researchers have wondered since the late 1800s why people suffering from brain damage sometimes experience strange visual consequences. For example, someone might have normal visual function in all ways except for the ability to recognize faces.

It was not until 1992, however, that David Milner and Melvyn Goodale came out with an influential paper delineating two distinct visual systems in the brain. The ventral stream, or the temporal lobe, is involved in object recognition and the dorsal stream, or the parietal lobe, guides an action related to the object.

In 1997, MIT’s Nancy Kanwisher and colleagues demonstrated that a region of the brain is specialized in face perception — the fusiform face area, or FFA. Just a year later, Kanwisher’s lab delineated a neural region specialized in processing places, the parahippocampal place area (PPA), located in the ventral stream.

While working as a post-doctoral fellow in the Kanwisher lab, Dilks led the finding of a second region of the brain specialized in processing places, the occipital place area, or OPA, located in the temporal stream.

Dilks set up his own lab at Emory the same year that discovery was published, in 2013. Among the first questions he wanted to tackle was why the brain had two regions dedicated to processing places.

Persichetti designed an experiment to test the hypothesis that place processing was divided in the brain in a manner similar to object processing. Using software from the SIMS life simulation game, he created three digital images of places: A bedroom, a kitchen and a living room. Each room had a path leading through it and out one of three doors. Study participants in the fMRI scanner were asked to fixate their gaze on a tiny white cross. On each trial, an image of one of the rooms then appeared, centered behind the cross. Participants were asked to imagine they were standing in the room and indicate through a button press whether it was a bedroom, a kitchen or a living room. On separate trials, the same participants were also asked to imagine that they were walking on the continuous path through the exact same room and indicate whether they could leave through the door on the left, in the center, or on the right.

The resulting data showed that the two brain regions were selectively activated depending on the task: The PPA responded more strongly to the recognition task while the OPA responded more strongly to the navigation task.

“While it’s incredible that we can show that different parts of the cortex are responsible for different functions, it’s only the tip of the iceberg,” Dilks says. “Now that we understand what these areas of the brain are doing we want to know precisely how they’re doing it and why they’re organized this way.”

Dilks plans to run causal tests on the two scene-processing areas. Repetitive transcranial magnetic stimulation, or rTMS, is a non-invasive technology that can be attached to the scalp to temporarily deactivate the OPA in healthy participants and test whether someone can navigate without it.

The same technology cannot be used to deactivate the PPA, due to its deeper location in the temporal lobe. The Dilks lab plans to recruit participants suffering brain injury to the PPA region to test for any effects on their ability to recognize scenes.

Clinical applications for the research include more precise guidance for surgeons who operate on the brain and better brain rehabilitation methods.

“My ultimate goal is to reverse-engineer the human brain’s visual processes and replicate it in a computer vision system,” Dilks says. “In addition to improving robotic systems, a computer model could help us to more fully understand the human mind and brain.”

How our residential aged-care system doesn’t care about older people’s emotional needs

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Most aged-care residents don’t feel like they are loved or belong in their facility.
from shutterstock.com

Lee-Fay Low, University of Sydney

All humans have fundamental needs. These are physiological (food, drink, clothing, sleep), safety (emotional security, physical safety, health), love and belonging (friendships, community), esteem (respect, dignity) and self-actualisation (accomplishment, personal development).

For people living in Australia’s residential aged-care facilities, these needs are often not met.

Most residents do not feel they are loved or belong in the facility. Like aged-care resident Neda Borenstein, whose secret camera footage broadcast on ABC’s Four Corners showed her singing the Australian national anthem in bed while she waited more than three hours to be changed. “I’m just a number,” Neda told her carer when she finally returned to help her up.

Less than one-third of residents we interviewed said they were friends with another resident. This means most don’t have the social support associated with friendships. Most residents said they felt socially isolated, which is associated with poor well-being.

A 2016 study of residents’ lived experiences in an aged-care facility found many felt they had little dignity, autonomy or control. Outside of meal and structured activity times, people with dementia spend most of their time stationary, alone and doing very little or nothing.

One study looking at interactions between residents and their carers showed residents were alone 40% of the time they were observed. When staff were present, they mostly did not engage verbally, emotionally or physically with the resident.

Aged-care facilities can also feel psychologically unsafe to residents.
Residents with dementia may be locked in secure units or physically restrained, using mechanisms such as bedrails or restraining belts.

Residents sometimes don’t get along. They might argue yell, swear, pinch, hit or push each other. We don’t have good data about how often resident-to-resident verbal and physical aggression happens, but it can result in injury and even death.




Read more:
Violence between residents in nursing homes can lead to death and demands our attention


The consequences of unmet needs?

Residents can react negatively when their needs are not met. They become bored, sad, stressed, cranky, anxious, depressed, agitated, angry and violent.

In people with dementia, we used to call these reactions “behavioural and psychological symptoms of dementia” (BPSD). But people with dementia have been pointing out these are normal human responses to neglect, not symptoms of dementia. Almost all (90%) aged-care residents display one or more of these negative reactions.

In many facilities, staff “manage” such reactions with the use of sedating antipsychotic medications. But clinical guidelines recommend looking at the reasons people may be reacting that way and addressing those before medication.




Read more:
Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients


Half of nursing home residents have symptoms of depression, and a third have symptoms of anxiety. More than half of residents have been found in studies to behave in ways that might suggest they no longer wish to live. This includes refusing food or medication, one-third of residents having suicidal thoughts and a small number of nursing home residents actually taking their own lives.




Read more:
Too many Australians living in nursing homes take their own lives


Why does Australian aged care fail to meet fundamental human needs?

We might not be spending enough on aged care to enable providers to meet fundamental human needs. Australia spends about 1% of its GDP on long-term care – less than the OECD average of 1.5%.

Private investment in aged care is growing, as have residential aged care profits, but it’s a difficult industry in which to make money. Insufficient funding translates to insufficient staff and less skilled staff. Our funding system rewards dependency, and there are no funding incentives for providers to improve the psychological well-being of residents, or go beyond that to help them flourish.

Friendships are an important part of healthy ageing.
from shutterstock.com

People looking for a nursing home don’t have any independently provided information by which to compare quality or performance.

The National Quality Indicator Program – a program for measuring care in residential aged-care facilities that began in 2016 – was meant to provide information for people trying to compare facilities on clinical indicators of care quality.

But participation in the program is voluntary for providers. Neither quality of life nor emotional well-being indicators are included in the suite of quality indicators (even though one has been trialled and found to be suitable). We also don’t know if or when the data might be published.

What is needed?

We need a fundamental shift in community, government, service provider, staff and regulatory expectations of what residential aged care does. Our model of aged care is mainly about clinical care, while neglecting emotional care.

For instance, friendships are a unique social interaction that facilitate healthy ageing, but many residents told us that the social opportunities in their nursing home did not align with their expectations of friendship.




Read more:
Loneliness is a health issue, and needs targeted solutions


We need our model of care to be a model of a home. In a home everyone contributes, has a say in what happens in the home (such as the menu, interior design, routine and functions), is able to invite their friends to their home for a meal, and can leave during the day and come back at night. A home is a safe place, where people are loved and nurtured, and where they can be active and fulfilled.The Conversation

Lee-Fay Low, Associate Professor in Ageing and Health, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients

 

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People with dementia often experience a range of psychological symptoms and behaviour changes.
from shutterstock.com

Juanita Westbury, University of Tasmania and Carmelle Peisah, University of Sydney

From time to time, we hear or read about medical procedures or treatments that can be ineffective and needlessly drive up the nation’s health-care costs. This occasional series explores such procedures individually and explains why they could cause more harm than good in particular circumstances.


Antipsychotic medications were initially developed to treat schizophrenia, a mental health condition characterised by psychotic symptoms such as delusions and hallucinations. Because of their sedative effects, antipsychotic medications (such as risperidone, olanzapine, quetiapine and haloperidol) are often used to “manage” people with dementia.

People with dementia often experience a range of psychological symptoms and behaviour changes. These can include anxiety, sleep disturbance, pacing, wandering, crying out, agitation, delusions and hallucinations.

These are referred to as “behavioural and psychological symptoms of dementia” (BPSD) though the term “responsive behaviours” has also been adopted to help explain their cause, signalling that there are often reasons behind the behaviours. Understanding and treating these reasons is the best way to approach these behaviours.




Read more:
Chemical restraint in aged-care homes linked to early death



Antipsychotic medications are known as psychotropic medications. These are drugs that alter a person’s mental state and include antipsychotics, antidepressants, benzodiazepines and anticonvulsants, which are also used to sedate patients in nursing homes. These come with significant and serious risks. Clinical guidelines recommend such medications be used only as a last resort.

Psychotropic medicines should only be considered when non-pharmacological interventions have failed and the patient has symptoms that are distressing for them, their family or fellow residents.

Responsive behaviours

Dementia is not just a single disease. It’s a term describing symptoms associated with more than 70 separate diseases, including Alzheimer’s disease and Lewy body dementia. The condition affects many brain functions including language, personality and reasoning skills, not just memory, which is usually associated with the condition.




Read more:
What causes Alzheimer’s disease? What we know, don’t know and suspect


Responsive behaviours in people with dementia vary according to the type and severity of their disease. They also fluctuate over time. A Canadian study of 146 aged care residents assessed these behaviours monthly for six months, revealing a wide variation in their duration and frequency. Results showed most responsive behaviours lasted for less than three months with usual care.

Dementia affects many brain functions including langugage, personality and reasoning skills.
from shutterstock.com

Many responsive behaviours in people with dementia are thought to result from, or be worsened by, unmet needs (pain, hunger), the environment (over- or under-stimulation), social needs (loneliness or need for intimacy) and approaches of carers or others. Sometimes these behaviours are caused by an acute medical illness on top of the dementia, such as an infection. Other times the behaviours arise from the disease process of dementia itself.

Each cause requires different treatment. For example, an infection shouldn’t be missed, nor should pain, each requiring different strategies. So, the first step for those around the person, both health care professionals and family carers, is to work out why they are behaving a certain way rather than reaching for a script pad.

Psychotropic use in aged care

Psychotropic medications are often over-used. The main evidence for excessive use of psychotropics such as antipsychotics in dementia in Australia has been collected in aged care homes. A recent study, that one of the authors was involved in, examined antipsychotic use in 139 homes across all six states and the ACT during 2014-2015. It assessed the use of antipsychotics in more than 11,500 residents.

We found that 22% of residents were taking an antipsychotic medication every day. And concerningly, more than 10% of residents were charted for a “when required” antipsychotic. This means they could be given an antipsychotic dose when a behaviour occurred that their carer decided was necessary to medicate, or a top-up dose in addition to their regular dose.




Read more:
Dementia patients’ thinking ability may get worse in winter and early spring


Excessive use of antipsychotics in older people does not appear to be confined to the residential aged care sector. A 2013 district nursing study of 221 people with dementia living in their own homes found that 18% were prescribed these medications.

Many trials have examined the effectiveness of antipsychotics to treat agitation in people with dementia. These studies show they only offer benefit to about 20% of people with these symptoms and appear to offer no benefit for other responsive behaviours such as wandering, crying out or anxiety.

Antipsychotics don’t benefit symptoms such as wandering, crying out or anxiety.
from shutterstock.com

But what’s worse is that use is associated with severe adverse effects including stroke, early death, infections, Parkinson’s-like movement disturbances, falls and over-sedation.

There are times when behaviours can be severe and disabling and impact the quality of life for the person with dementia. Sometimes the behaviours may put the person or others at risk. In these cases, careful prescribing is recommended. When needed for responsive behaviours, antipsychotics should be taken at the lowest effective dose for a maximum of three-months.

If people are in pain, it is absolutely essential that this is treated. One study showed using increasingly strong analgesia was as effective in treating agitation in dementia as antipsychotics.

Advice for family members

Family members need to understand and be aware of these symptoms and behaviours, their treatment and alternatives and be part of finding out why they are happening as well as the solution.

This includes being aware that legally, psychotropics must be prescribed with consent, either from the person themselves or from their substitute decision-maker. Families should not just be finding out about use of medications when they receive the pharmacy bill.

Skilled advice for nursing homes is available across Australia, 24-hours a day from the Dementia Behaviour Management Advisory Service and the Severe Behaviour Response Teams. They support aged-care providers in improving care for people with dementia and related behaviours.

Families need to make sure that the facility their loved one resides is in is aware of and uses this service, so they don’t have to resort to using drugs first. The 24-hour helpline number is 1800 699 799.


For more information about your rights, visit empoweredproject.org.auThe Conversation

Juanita Westbury, Senior Lecturer in Dementia Care, University of Tasmania and Carmelle Peisah, Clinical Associate Professor, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Designing for dementia

elderly-1461424_640How can design improve the lives of people with Alzheimer’s and other types of dementia?

You are stuck in a busy, noisy, unfamiliar building. You are unsure of where you are or even what time of year it is. All the corridors look the same. You find it hard to judge how far away the floor is. You can’t remember where the toilets are. You can’t remember why you’re here. You feel a rising sense of panic as you search for clues to where you are, and even who you are.

As the world’s population expands and the proportion of older people grows, the needs of elderly patients are increasingly relevant to healthcare design. It is estimated that one in four people in UK hospital beds have dementia, and the number of people with dementia is expected to double over the next 30 years.

The King’s Fund, an independent charity working to improve health and healthcare in England, was funded by the Department of Health to carry out a special project looking at how the design of hospitals, outpatient services and care homes could be improved to make life better for people with dementia. This Enhancing the Healing Environment programme was the first systematic look at this topic in the UK, and has resulted in materials and resources which are now being used globally. As well as guidelines for what makes a service dementia-friendly, there is a tool for assessing how dementia-friendly a service is.

The guidelines outline five key principles: meaningful activity, familiarity, legibility, orientation and wayfaring.

What do places that use these principles look like in real life? Age-related changes to vision mean that older people often find it harder to see contrasts and to perceive depth. If flooring changes colour between rooms this can seem like a step and be confusing. If carpets have bold, swirling patterns these can seem like obstacles or holes, which makes moving slow and difficult and can lead to falls. Dementia-friendly wards have matt, even-coloured flooring and clear sightlines through corridors.

The most helpful designs use clear contrasts in colour to mark spaces that have different uses, particularly to flag where toilets are. The toilets themselves have contrasting toilet seats and rails so the person can see where to sit.

Sarah Waller of the King’s Fund notes how innovations that might make some people’s lives easier can actually make things more confusing for people with dementia: “Odd-looking taps are difficult to understand. Sensor taps are almost impossible.”

Features similar to those seen in evidence-based hospital design are also important, including increased light, less noise and use of natural scenes. Increased opportunities for social space, and memorabilia and artworks that prompt memory, can also help. Increased access to staff, for example by using a cluster model of nursing rather than enclosed nursing stations, helps to reassure patients.

The results have shown how crucial good design can be. Changes like these have led to “fewer falls, less violence and aggressive behaviour, and less staff sickness,” says Waller. “Actually we’re making the environment friendly for everybody,” she adds. “Good dementia design is good for everybody.”

 

Find out more about the Enhancing the Healing Environment project.

 

You are stuck in a busy, noisy, unfamiliar building. You are unsure of where you are or even what time of year it is. All the corridors look the same. You find it hard to judge how far away the floor is. You can’t remember where the toilets are. You can’t remember why you’re here. You feel a rising sense of panic as you search for clues to where you are, and even who you are.

As the world’s population expands and the proportion of older people grows, the needs of elderly patients are increasingly relevant to healthcare design. It is estimated that one in four people in UK hospital beds have dementia, and the number of people with dementia is expected to double over the next 30 years.

The King’s Fund, an independent charity working to improve health and healthcare in England, was funded by the Department of Health to carry out a special project looking at how the design of hospitals, outpatient services and care homes could be improved to make life better for people with dementia. This Enhancing the Healing Environment programme was the first systematic look at this topic in the UK, and has resulted in materials and resources which are now being used globally. As well as guidelines for what makes a service dementia-friendly, there is a tool for assessing how dementia-friendly a service is.

The guidelines outline five key principles: meaningful activity, familiarity, legibility, orientation and wayfaring.

What do places that use these principles look like in real life? Age-related changes to vision mean that older people often find it harder to see contrasts and to perceive depth. If flooring changes colour between rooms this can seem like a step and be confusing. If carpets have bold, swirling patterns these can seem like obstacles or holes, which makes moving slow and difficult and can lead to falls. Dementia-friendly wards have matt, even-coloured flooring and clear sightlines through corridors.

The most helpful designs use clear contrasts in colour to mark spaces that have different uses, particularly to flag where toilets are. The toilets themselves have contrasting toilet seats and rails so the person can see where to sit.

Sarah Waller of the King’s Fund notes how innovations that might make some people’s lives easier can actually make things more confusing for people with dementia: “Odd-looking taps are difficult to understand. Sensor taps are almost impossible.”

Features similar to those seen in evidence-based hospital design are also important, including increased light, less noise and use of natural scenes. Increased opportunities for social space, and memorabilia and artworks that prompt memory, can also help. Increased access to staff, for example by using a cluster model of nursing rather than enclosed nursing stations, helps to reassure patients.

The results have shown how crucial good design can be. Changes like these have led to “fewer falls, less violence and aggressive behaviour, and less staff sickness,” says Waller. “Actually we’re making the environment friendly for everybody,” she adds. “Good dementia design is good for everybody.”

 

Find out more about the Enhancing the Healing Environment project.

 

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

A new project shows combining childcare and aged care has social and economic benefits

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Intergenerational care programs encourage relationship building between generations.
Griffith University

Anneke Fitzgerald, Griffith University; Katrina Radford, Griffith University, and Lalitha Kirsnan, Griffith University

What happens when you bring a group of older residents to mix with young children in childcare? Clapping hands and singing songs is just one way they spend the morning together. These interactions are made possible by intergenerational care programs that have gained popularity in Australia in recent years.

Intergenerational care programs provide older adults and children aged three to five with care and social support in the same setting, for short periods of time. This has mutual benefits.

The widespread implementation of intergenerational care programs has the potential to solve many of today’s economic challenges associated with child and aged care, while enhancing the educational and social benefits in encouraging relationship building between generations.

Intergenerational care programs in Australia

Although intergenerational care programs are popular in the US and UK, they’re in their infancy in Australia.

Intergenerational care gives older participants an improved sense of life purpose.
Griffith University

Given changing economic, demographic and social pressures in Australia, there’s an increased need for quality and cost-effective care arrangements for both older people and young children.

There’s an anticipated rise in demand for formal care services associated with an ageing population in Australia. This is further compounded by an increase in people not having children, shifts in perceptions of family obligations for caring, rising divorce rates and rising female employment rates.

Accompanying the unprecedented demand for formal aged care services is the limited supply of such care. Finding appropriate care for both older people and young children in Australia is often difficult and unsuitable for the person in need of care or their carer.

The increase in demand for formal care services and the shortage of supply of such care highlights the need for alternative models. This includes models such as intergenerational care. But current intergenerational programs in Australia tend to operate in residential aged care facilities, lack a formalised program based on educational teaching strategies, and don’t keep track of or evaluate participant outcomes.

The Griffith University Intergenerational Care Project

The Griffith University Intergenerational Care Project focuses on trialling two models of care:

  1. a shared campus model where an aged care centre is located in the same place as a childcare centre
  2. a visiting campus model where childcare and aged care centres are located separately and one group travels to visit the other.
Both younger and older participants in the Intergenerational Care Project have expressed excitement and joy at being able to interact with each other.
Griffith University

The psychological and social benefits of intergenerational care programs are well recognised. Griffith University’s Intergenerational Care Project is investigating the educational, workforce and economic benefits intergenerational care programs can bring to Australia.

This research is now well underway and is being conducted across four locations within Queensland and NSW. It’s conducted with older adults living with dementia and children aged three to five years.

In this program, older people and children meet for one hour each week over 16 weeks. They partake in shared activities designed to enhance engagement between generations.

Preliminary results suggest the reception of the program has been positive. Both younger and older participants expressed excitement and joy at being able to interact with each other.

Benefits of intergenerational care

Intergenerational care programs give children the opportunity to learn from and connect with an older generation, improve children’s behaviour and attitude towards older people, and enhance the overall well-being of both young and old participants.




Read more:
Combining daycare for children and elderly people benefits all generations


For older participants, intergenerational care programs allow them to pass on their knowledge and interact with young children in a meaningful way. As a result, they feel an improved sense of life meaning and enhanced self-worth.

Broader benefits

Community perceptions of older adults and ageing also tend to shift from negative to positive. This is especially important because older people want to be treated as valued members in society.
Intergenerational care programs enhance the quality of relationships between ageing people and children, and challenge ageist stereotypes.

Intergenerational care programs create a strong opportunity to address ageism in society from an early age and challenge people’s assumptions about the contributions of people living with dementia or experiencing other forms of cognitive decline.

This is particularly important in Australia. It’s projected by 2050 about one million people will be living with a dementia-related illness. This represents an increase of 254% since 2011.

There are also economic and wider social benefits of intergenerational care.
Griffith University

Delivering intergenerational programs in one location is also attractive because of anticipated cost savings. Both aged care and childcare organisations can decrease total running costs by sharing resources such as skilled labour, learning materials, and buildings.

Our preliminary workforce interview findings suggest intergenerational care is a career path that interests staff. It also suggests creating a training qualification to enable this career path may address workforce shortages in both child care and aged care.




Read more:
What happened when we introduced four-year-olds to an old people’s home


Intergenerational care programs offer an effective alternative model of care in Australia in the face of increasing economic, demographic and social pressures. An extensive rollout of such programs has the potential to give families access to more, higher quality childcare, and helps older people feel like valued members of society.

Anneke Fitzgerald, Professor, Griffith University; Katrina Radford, Lecturer, Deputy Director Research IBAS, Griffith University, and Lalitha Kirsnan, Marketing and Communications Officer, Intergenerational Care Project, Griffith University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Beastie Boy John Berry died of frontal lobe dementia – but what is it?

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www.shutterstock.com

Jan Oyebode, University of Bradford

John Berry, a founder member of the Beastie Boys, has died of dementia at the age of 52. Berry’s father told Rolling Stone magazine that his son died from frontal lobe dementia, a rare form of dementia more properly referred to as fronto-temporal dementia.

Symptoms of fronto-temporal dementia usually begin in late middle age. Because the disease is not very well known, people with fronto-temporal dementia often have delays in receiving a diagnosis and may find the services they need are not available.

A tricky term

The terms used for this dementia are confusing. The changes in the brain are referred to as “fronto-temporal lobar degeneration”. These do not initially have any effect on people’s behaviour. Once signs and symptoms show up, it is possible to diagnose the condition as one of the “fronto-temporal dementias”.

When the frontal lobes – the parts of the brain lying immediately behind the forehead – are mainly affected, there are changes in behaviour or personality, resulting in “behavioural variant fronto-temporal dementia”. When the temporal lobes – parts of the brain near the temples – are mainly affected, dementia shows up through changes in language, of which there are two types: semantic dementia and progressive non-fluent aphasia. Whichever type of fronto-temporal dementia people have, they do not come to the doctor complaining of the sort of problems with memory loss that most of us think of as being signs of dementia.

We don’t know the specific symptoms that John Berry had as each case of fronto-temporal dementia is different, but about four to 15 people in every 100,000 have fronto-temporal dementias – and there are some common symptoms.

Losing the supervisor

There is huge variation in how fronto-temporal dementia progresses. But over time, it usually affects more and more aspects of thinking and functioning. It is a condition that shortens life, with people living about three to ten years after diagnosis.

So what happens during the earlier stages of behavioural variant fronto-temporal dementia – the type that is sited in the frontal lobes? One way of thinking of this area of the brain is to imagine it as the supervisor of complex activities and social behaviour. When the supervisor starts to do its job poorly, people develop trouble with complicated tasks. They may not be able to get started, so they may seem apathetic and lacking in energy. When they get started they may get stuck in a groove.

Fronto-temporal dementia is sometimes confused with depression.
IgorGolovniov/Shutterstock.com

One carer we spoke with described how his brother would drive the car late into the night until it ran out of petrol even though he knew, on one level, that he ought to stop to fill up.

Sometimes people repeat an action over and over in exactly the same way, perhaps arranging objects very precisely or following a set daily routine according to a strict timetable. As the frontal lobe overseer loosens control, people often become uninhibited. They may become blunt and tactless. They may act on appetites and urges in ways that are quite out of character: touching people, swearing profusely when irritated and eating excessive amounts of sweet foods.

A particular difficulty for friends and family is that people with this dementia lose their ability to empathise. They may no longer offer comfort if someone is in tears and may seem very self-centred.

As not many people are familiar with the condition, it is often mistaken for other more common conditions. People may put the changes down to mid-life crisis, stress at work, depression or the menopause. It is possible that the condition is often misdiagnosed.

On average, it takes four years to diagnosis after symptom onset for younger people with dementia, twice as long as for those over 65 years of age, by which time, relationships may have broken down. People with fronto-temporal dementia are often at a stage of life where they still have children – and sometimes parents – who depend on them. So this, coupled with their increasing needs for support can be very stressful for everyone. Yet a recent national survey, currently in press, found there was a lack of provision of appropriate care across most of the country.

Biomedical research is making strides in identifying many of the proteins that accumulate as plaques in the brains of the people affected. The genetic aspects which affect about one in every five to ten cases are also now understood. However, with a cure still a long way off, research into how to support and assist people to manage their day-to-day lives is also very important. In our research we have taken detailed accounts of the experiences of those affected and we will be using these to develop and test ways of helping people and their families to manage and live better with the condition.The Conversation

Jan Oyebode, Professor of Dementia Care, University of Bradford

This article was originally published on The Conversation. Read the original article.

Frontal lobe paradox: where people have brain damage but don’t know it

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vectorfusionart/Shutterstock

Sam Gilbert, UCL and Melanie George, Canterbury Christ Church University

Humans have big brains and our frontal lobes, just behind the forehead, are particularly huge. Injuries to this part of the brain often happen after blows to the head or a stroke. Paradoxically, some people with frontal lobe injuries can seem unaffected – until they’ve been carefully evaluated.

The frontal lobes are sometimes described as the executives of the brain, or conductors of the orchestra. Among other things, they control and organise our thinking and decision-making processes. You rely on your frontal lobes when you do things like make plans, switch from one activity to another, or resist temptation.

Some people with frontal lobe injuries seem completely normal in short one-to-one conversations, but they actually have great difficulty with everyday tasks, such as cooking, organising their paperwork or remembering to take medication. This is called the frontal lobe paradox because, even though these people seem unimpaired when assessed, they have significant difficulties in everyday life.

Without specialist expertise in acquired brain injuries, it can be almost impossible to spot frontal lobe paradox because, in many cases, people will still be able to speak normally and seem remarkably unimpaired. They may be unaware of their difficulties and deny that they need any help or support.

Insight issues

People affected by the condition are not lying when they say they don’t need help or support. Instead, they may lack knowledge of their own condition because areas of the frontal lobes that are responsible for self-monitoring and developing insight have been affected by their brain damage.

A second reason for the frontal lobe paradox is that the skills needed for an assessment interview are different from those needed in everyday life. The structure and routine of an environment, such as a rehabilitation ward, can, in effect, play the role of someone’s frontal lobes. This can mask the difficulties people experience in less structured, open-ended environments. For this reason, a person’s level of ability needs to be assessed in a situation that resembles everyday life. A seemingly simple task, such as going shopping, can reveal difficulties in people who appear unimpaired on standard tests of memory and attention, and have normal intelligence.

People with frontal lobe paradox may need help with things like cooking.
Rawpixel.com/Shutterstock.com

Lack of specialist training

Neuroscientists and doctors have known about the frontal lobe paradox for at least 50 years, but it is not always understood by non-specialists. This situation can lead to people not receiving help they desperately need.

For example, in England and Wales, social workers and care managers are usually responsible for deciding whether a person has the capacity (under the Mental Capacity Act 2005) to decline support or care. These are hardworking professionals who are motivated to act in the best interests of those under their care, but many receive little or no specialist training in brain injury.

These professionals tend to base their decision about a person’s mental capacity on a short face-to-face interview. This is exactly the situation that can lead to people with frontal lobe damage being denied the care that they need.

The assessment provides the support needed for a person to sound competent and able, but only for the duration of the assessment. In one example, a woman persuaded a series of professionals that she could safely live alone after a significant brain injury. In reality, she could not make meals for herself or remember to take her lifesaving medication. Sadly, she died at home shortly afterwards.

Support needed

We don’t know exactly how common the condition is, but the frontal lobe paradox is probably found in a much higher number of people than you might first imagine. As well as those who have suffered blows to the head and strokes, it can affect people with certain infections, some forms of dementia and even poorly controlled diabetes.

It is vital that social workers and care managers are trained on brain injury to protect the interests of people with frontal lobe injuries. People with these injuries are in particular need of support, but they are often the least likely to receive it.The Conversation

Sam Gilbert, Associate Professor, Institute of Cognitive Neuroscience, UCL and Melanie George, Consultant Clinical Neuropsychologist, Canterbury Christ Church University

This article was originally published on The Conversation. Read the original article.

Is there really a benefit from getting an early dementia diagnosis?

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Monkey Business Images/Shutterstock.com

Tim Gomersall, University of Huddersfield

The Alzheimer’s Society recently issued a call for people with symptoms such as memory loss and confusion to seek early medical help. The British charity is worried that people may be putting off getting a dementia diagnosis and not receiving the health care and support they need. As the Alzheimer’s Society’s recent blog post put it: “A lack of diagnosis is denying many people with dementia the chance of getting the best possible treatment, information and support – evidence shows the earlier on you receive these, the better your chance of living well for longer.” But is early diagnosis always a good thing?

Early diagnosis has also been a key policy aim for government. We can see this in the National Dementia Strategy, and David Cameron’s Challenge on Dementia. A few years ago, the NHS even trialled a scheme to pay GPs £55 for each dementia diagnosis made. This move was widely condemned by doctors’ groups and quietly dropped after six months. In any event, the push for earlier diagnosis continues. So what exactly are the benefits of earlier diagnosis? And who are the beneficiaries?

What works?

There are no known treatments to prevent or reverse dementia, although drugs called memantine and acetylcholinesterase inhibitors can help to relieve symptoms .

In the course of my recent fieldwork, however, I met some people with memory loss who invested hope in these treatments beyond what was possible. They believed that getting onto anticholinesterase inhibitors as soon as possible could delay further decline.

Drugs can help with symptoms.
Photographee.eu/Shutterstock.com

One of the most difficult experiences in my recent research was meeting a woman who felt she had been denied treatment by the doctors, and asked me and my colleague if we were able to prescribe them for her. We had to explain that we were not clinically qualified, and in any case, the drugs would not prevent the progression of dementia. But false hope can translate into big profits for drugs companies.

The anticholinesterase inhibitor market had an estimated value of US$4.2 billion globally in 2011, with this figure set to increase over coming years as people live longer. One recent market analysis identified early diagnosis as “a challenge [that] will affect the growth of the market over the 2013-2023 forecast period”.

Thankfully, drug treatment is not the only option for people with dementia. Anyone with suspected dementia can access a memory clinic on the NHS to seek practical support for their needs. Memory clinics typically include a range of health professionals – including occupational therapists, psychologists, specialist nurses and psychiatrists. These multidisciplinary teams can help with emotional and occupational support. They can also offer advice on adapting homes – for instance, by providing memory aids, grab rails for bathing and toileting, and extra lighting.

The National Institute for Health and Care Excellence (NICE) also recommends “group cognitive stimulation programmes”. Cognitive stimulation uses enjoyable activities to engage thinking and memory – for example, musical activities, reminiscence sessions, and games. A recent review suggests this approach could help to maintain cognitive abilities, particularly memory and communication.

However, the current evidence relies on a number of small trials of often quite different activities, going back to 1979. Nevertheless, in the absence of effective drug treatments, cognitive stimulation is important for many people with dementia, and continues to attract research and practice interest.

Finally, we shouldn’t underestimate the psychological importance of receiving a diagnosis. Overall, the evidence shows a mixed picture. On the one hand, people are glad to understand the cause of their symptoms, to be able to plan for the future, and access resources such as dementia support groups. However, people often worry about the stigma of dementia, and some want to avoid the emotional impact of the diagnosis.

Is earlier better?

Over the last couple of years, I’ve been involved in a project looking at people’s experiences of mild cognitive impairment. This syndrome is defined as a “boundary state” between cognitive ageing (a normal process) and dementia.

If the Alzheimer’s Society’s suggestion that dementia is being under-diagnosed holds, then people with mild cognitive impairment are an anomaly. They have sought medical advice for possible dementia symptoms which are not severe enough for a diagnosis. Might it be that more people are already seeking help earlier, as the Alzheimer’s Society hopes? It seems plausible.

After the National Dementia Strategy was launched, there was a 12% increase in dementia diagnosis rates in the UK between 2009 and 2011, and recent studies show a continued upward trend.

So, who benefits from early diagnosis? As suggested above, a number of commercial and charitable organisations stand to gain substantially. There are also some benefits that may accrue to people with dementia from an early diagnosis in terms of symptom control and cognitive stimulation. Though any potential gains are small, these can still be meaningful to the person.

The other side of this, however, is the risk of over-diagnosis and increased public health anxiety associated with such “public awareness” campaigns. For example, our recent review of mild cognitive impairment research suggests people with this diagnosis live with significant uncertainty about the cause of their problems.

These patients often continue to worry about possible dementia, and the infrastructure for supporting them is patchy at best. The ethics of diagnosing people who may have no underlying illness has also been questioned. So yes, we should be helping people with dementia to get the support they need as soon as possible. But this shouldn’t come at the cost of over-diagnosing and over-medicating people.The Conversation

Tim Gomersall, Senior Lecturer in Psychology, University of Huddersfield

This article was originally published on The Conversation. Read the original article.

Empathetic dogs lend a helping paw

News Release
July 2018 | Heidelberg – Empathetic dogs lend a helping paw

Study shows that dogs that remain calm and show empathy during their owner’s distress help out faster

man wearing black and brown fur hoodie jacket and blue pants holding dog leash beside white short coat dog
Photo by Pixabay on Pexels.com

Many dogs show empathy if their owner is in distress and will also try to help rescue them. This is according to Emily M. Sanford, formerly of Macalester College and now at Johns Hopkins University in the US. She is the lead author of a study in Springer’s journal Learning and Behavior that tested whether there is truth in the notion that dogs have a prosocial and empathetic nature. Interesting to note, the study found that dogs specially trained for visitations as therapy dogs are just as likely to help as other dogs.

In one of their experiments, Sanford and her colleagues instructed the owners of 34 dogs to either give distressed cries or to hum while sitting behind a see-through closed door. Sixteen of these dogs were registered therapy dogs. The researchers watched what the dogs did, and also measured their heart rate variability to see how they physically reacted to the situation. In another part of the experiment, the researchers examined how these same dogs gazed at their owners to measure the strength of their relationship.

Dogs that heard distress calls were no more likely to open a door than dogs that heard someone humming. However, they opened the door much faster if their owner was crying. Based on their physiological and behavioural responses, dogs who opened the door were, in fact, less stressed than they were during baseline measurements, indicating that those who could suppress their own distress were the ones who could jump into action.

The study therefore provides evidence that dogs not only feel empathy towards people, but in some cases also act on this empathy. This happens especially when they are able to suppress their own feelings of distress and can focus on those of the human involved. According to Sanford, this is similar to what is seen when children need to help others. They are only able to do so when they can suppress their own feelings of personal distress.

“It appears that adopting another’s emotional state through emotional contagion alone is not sufficient to motivate an empathetic helping response; otherwise, the most stressed dogs could have also opened the door,” explains co-author Julia Meyers-Manor of Ripon College in the US. “The extent of this empathetic response and under what conditions it can be elicited deserve further investigation, especially as it can improve our understanding of the shared evolutionary history of humans and dogs.”

Contrary to expectation, the sixteen therapy dogs in the study performed as well as the other dogs when tested on opening the door. According to Meyers-Manor this may be because registered therapy dogs, despite what people may think, do not possess traits that make them more attentive or responsive to human emotional states. She says that therapy dog certification tests involve skills based more on obedience rather than on human-animal bonding.

“It might be beneficial for therapy organizations to consider more traits important for therapeutic improvement, such as empathy, in their testing protocols,” adds Meyers-Manor. “It would also be interesting to determine whether service dogs show a different pattern of results given their extensive training in attentiveness to their human companions.”

Reference: Sanford, E.M. et al (2018). Timmy’s in the well: Empathy and prosocial helping in dogs, Learning & Behavior DOI: 10.3758/s13420-018-0332-3

Getting the temperature just right helps people with dementia stay cool

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There are currently no rules to ensure that aged-care facilities provide a comfortable indoor environment.
University of Wollongong, CC BY-SA

Federico Tartarini, University of Wollongong; Paul Cooper, University of Wollongong, and Richard Fleming, University of Wollongong

Everyone knows how bad it feels when the temperature is uncomfortably hot or cold. For most of us it doesn’t last long as we can take simple steps to get comfortable, such as putting on clothes, opening a window, or switching on a heater.

But what happens when you can’t control the temperature where you live? This problem is faced by many residents of aged care facilities, and can be particularly difficult for those living with dementia. To find out how these residents cope we recently carried out a three-year research project on the effects of indoor environment in aged care facilities in south-eastern NSW. This was part of a broader program of University of Wollongong research on the impact of indoor environment on elderly people.




Read more:
Australia’s aged care residents are very sick, yet the government doesn’t prioritise medical care


Dementia and agitation

Dementia is a collection of symptoms that affect people’s behaviour, thinking, and their ability to communicate and perform everyday tasks. Sometimes people with dementia can become agitated or distressed, which can be disturbing for other people around them. This often happens for no clear reason.

This is a big issue for the aged care sector since approximately half of all residents in aged care facilities have dementia.

While current rules governing the accreditation of aged care facilities in Australia do make reference to the need to provide ‘comfortable internal temperatures and ventilation’ there is no specific reference to what temperature ranges are considered comfortable. We set out to find whether this should be remedied and whether there is a relationship between agitation among residents living with dementia and the indoor temperatures to which they are exposed.

Dr Federico Tartarini (right) led the study that found that indoor temperatures in aged care centres have a dramatic impact on the wellbeing of residents, particularly those living with dementia. Photo: University of Wollongong.
Author supplied, CC BY

Tracking the temperature

Firstly we set up a network of sensors in six aged care facilities to monitor indoor environmental conditions, such as air temperature, humidity, air velocity and noise.

In collaboration with the care staff of one particular facility we then assessed the frequency and intensity of a range of agitated behaviours exhibited by residents living with dementia over the course of a year.

The most important finding of this study was that the frequency and intensity of agitated behaviours of residents with dementia significantly increased when they were exposed to uncomfortable air temperatures.

A statistically significant correlation was found between rates of agitation of residents and their cumulative exposure to temperatures outside their comfort zone of between 20°C and 26°C.

More generally, the data collected from the hundreds of temperature sensors across all our case study facilities over a one-year period showed that some facilities were often uncomfortably hot or cold (below 19°C in winter and over 30°C in summer) for significant periods.

Poorly designed buildings

This was attributable to many different factors including poor thermal design of the buildings and poor control of the heating and cooling systems. Interestingly, our analysis showed staff were significantly less tolerant of variations in indoor temperature than residents, probably because they were generally more active than the residents (i.e. moving around and working), and therefore had higher metabolic rates. They may have also had higher thermal comfort expectations than the residents.

Regulations can help

The evidence appears to suggest that maintaining a comfortable temperature
will reduce the behavioural and psychological symptoms of dementia.

There is a clear need for new regulations that ensure aged care facilities provide comfortable indoor environmental conditions, particularly for elderly residents, but also for the staff working in these facilities.

The aged care sector needs good indoor environmental rating tools, built on recent research evidence, to guide the design of their facilities and to audit their operations.

This type of approach has already been successfully applied in the commercial building sector, where mandatory disclosure of the real energy consumption of larger offices, for example, is required of owners wishing to sell or lease their property.




Read more:
Why is it so cold in here? Setting the office thermostat right – for both sexes


The ConversationPublicly available ratings of the actual indoor environment provided to aged care residents and staff would alert architects, managers and staff to the importance of thermal comfort and help elderly people, and their families, make a more informed choice as to the best facility in which to live.

Federico Tartarini, Associate research fellow, University of Wollongong; Paul Cooper, Senior Professor and Director of the Sustainable Buildings Research Centre (SBRC), University of Wollongong, and Richard Fleming, Professorial Fellow and Executive Director, Dementia Training Australia, University of Wollongong

This article was originally published on The Conversation. Read the original article.

You’re the voice: the evolution of the PainChek app

News Release
April 2018| Australia – You’re the voice: the evolution of the PainChek app

How can someone tell you they’re experiencing pain or discomfort that isn’t overtly visible, if they can’t communicate through speech? Professor Jeff Hughes from Curtin’s School of Pharmacy and Biomedical Sciences has created an app that gives a voice to people who are living with conditions that impact upon their ability to verbally communicate with others.

Elderly woman sitting down holding a phone with man sitting behind her.

One of these conditions is dementia, a neurodegenerative condition that affects the brain’s cognitive ability. It’s currently the second leading cause of death in Australia, and with the number of people living with dementia set to reach more than 536,000 by 2025, the demand for tools that help treat and manage the condition is sure to increase.

Professor Hughes’ brainchild was the world’s first smartphone app for pain assessment and monitoring, developed under the banner of Curtin start-up company ePAT (electronic Pain Assessment and Technologies Ltd) from 2014. The start-up was acquired by PainChek Ltd in 2016, and the app is now being further developed and marketed by the company as ‘PainChek’.

The app provides an accurate and reliable means for healthcare professionals and family members providing care at home to assess pain, and ultimately help to improve quality of life for those they care for.

“A significant issue among people with advanced dementia is that they no longer have the communication skills to express the level of pain they are suffering,” Hughes explains.

“The seriousness of their pain can often go unrecognised. But PainChek, a smart-device app, which utilises automation and artificial intelligence, allows for the detection and quantification of pain, based in part on a patient’s facial expressions.

PainChek uses facial recognition and a 42-point pain scale to help healthcare professionals and family members decipher the level of pain being experienced by their patient or family member, allowing them to respond accordingly. A level between zero to six represents no pain, seven to 11 mild pain, 12 to 15 moderate pain and anything above 15 means severe pain.

The tailored pain scale was developed by Hughes and his team through a tireless review of existing literature and tools, including the well-known Abbey Pain Scale, an observational pain assessment tool used nationally in the assessment of pain in people with dementia.

PainChek automates pain assessment, allowing for the continual evaluation of pain, and providing the user with access to a personalised pain chart of their patient or family member, which has been mapped over an extended timeframe. The chart is designed to be used in conjunction with other information recorded on the app, which correlates with or affects pain levels, such as medication types and dosages, activity levels and behaviour. All recorded data is backed up when the device is connected to the internet.

Since its inception in 2013, Hughes and his team have been working hard to assess and monitor the performance of the app. They’ve conducted validation studies with a range of Perth-based aged care providers, including Mercy Care, Juniper, Bethanie and Brightwater, comparing each generation of the app with the Abbey Pain Scale. Data from these trials was used to support the registration of the app as a Class 1 medical device in Australia (Therapeutics Goods Administration registration) and Europe (CE Mark) by PainChek Ltd.

Trials in aged care facilities were successful, validating the functionality and purpose of PainChek. One of the residents living with dementia was previously cared for at home by her husband. He says the app has been an invaluable tool for assessing his wife’s constant lower back pain.

“When we tested the app on my wife, we got a score of four out of 10. It was so quick and accurate. She’s in pain constantly with her lower back, and has trouble sitting down. The pain scale changes daily, and it makes me feel really comfortable that I can administer the necessary pain killers at any given time.”

In addition, the research has led to the development of a partnership with Dementia Support Australia, which comprises the two entities Dementia Behaviour Management Advisory Service and Severe Behaviour Response Teams.

“Dementia Support Australia sends consultants out to assist in the care of people living with dementia who have significant behavioural problems,” Professor Hughes says.

“What they had found from their own observations was that somewhere between 35 to 60 per cent of the people had undetected or undertreated pain, and they wanted the means to improve the assessment and documenting of that pain, and better demonstrate the effectiveness of their service.

“PainChek Ltd are effectively doing an implementation trial with them, starting here in Western Australia and then in South Australia. As part of the trial, we provide training and, after each roll out, we also offer clinical and technical support. In 2018, we’ll roll out the app to all 150 of their consultants Australia-wide.”

The development of the app hasn’t stopped there, with PainChek Ltd working on adaptations that can cater for other groups unable to communicate verbally: infants and pre-verbal children.

“Twenty per cent of children have chronic pain, with common causes being headaches and gastrointestinal or musculoskeletal conditions. And that pain can produce a whole range of issues, such as behavioural problems, poor interaction with others and avoiding school. Most people think that little kids don’t feel pain the way adults do, but we’re learning this isn’t the case,” Hughes reveals.

The intended impact of the children’s app is three-fold. One, to provide parents with surety about whether they’re taking the appropriate action. Two, to assist healthcare professionals in deciding what level of pain a child might be in and which medication to administer if applicable, and three, to encourage the investigation of the root cause of the pain to then seek the appropriate treatment.

Much like the adult app, the children’s app contains a number of items to help assess pain, however, the facial recognition element is far more in-depth due to the fact that children typically use more pain-associated facial expressions than adults. As a result, Hughes’ team has been capturing videos of children who are in pain, primarily during the immunisation process, with each video contributing to a database of coded images. With a preliminary algorithm already built, PainChek Ltd plans to have the first prototype available for trialling in 2018.

More information about the  app can be found on the PainChek website.

Why hospital architects need to talk to nurses

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Hospital building work in East Sussex.
Shutterstock

Jens Roehrich, University of Bath

Many of us pay close attention to how our taxes are spent, and how well governments invest in infrastructure projects such as roads, schools and hospitals. Value for money is key. Yet horror stories of waste, lateness and poor quality are common.

To develop and finance public services and infrastructure, governments around the world (but especially in Europe) have become increasingly keen on private sector involvement. These cross-sector collaborations can help provide value for money for taxpayers – but they are also at risk of wasting it.

In health care, collaborations between public and private partners have a direct impact on society. This is why it is important for health care professionals like doctors and nurses to talk directly to the designers and builders of a new hospital. It ensures that these projects not only deliver economic value for the private companies building the hospital – but also social value for the doctors, nurses and patients who will use the hospital for decades to come.

For instance, in one recently built British hospital, medical staff were able to bring valuable insight to the design process. A visit by some of the hospital’s senior nurses to a children’s hospital in the US led to the replication of a lighting design on the ceiling of a children’s ward so that it mimicked a starry night sky. As one of the nurses explained to me afterwards:

It might sound like a small change, but it provides a much more homely surrounding than the normal NHS lighting. This is important for our young patients [providing a] less scary, hospital experience which positively impacts on the healing process. […] It creates a much nicer environment in which our little patients can recover.

In another hospital, input from senior nurses helped to establish a ward design that most suited their professional needs – right down to the placement of plumbing. This saved large amounts of money that might have been spent on undoing unnecessary building work had the nurses not been consulted.

As one project manager of the construction company told me: “Thanks to [the senior nurses’] input and telling us how they intend to use wards, we changed the ward layout, such as the position of sinks. This may seem to be a minor issue, but may have a huge impact when caring for a patient.”

To see how social value can be best achieved through cross-sector collaborations we looked into the key building blocks that go beyond a mere focus on contracts.

An organisations’ prior experience of cross sector collaboration and a supportive climate is vital in creating social value. It also helps to have had some exposure to previous projects (good and bad). But a major ingredient is the individual employees in both public and private sector organisations.

We need a starry sky ceiling right there.
Shutterstock

Building mutual knowledge and aligning goals between doctors, nurses and design and construction professionals is key, as public and private sector employees often have different objectives for projects (making a profit vs healing patients). A shared understanding can come through listening to and appreciating the other parties’ professional language and the expertise that language expresses.

Joint expertise

Beyond an understanding of the other parties’ expertise, practical matters of shared goals and jointly developed timelines are necessary. Coordinating efforts between the two sectors needs to take priority at the outset – rather than emphasising project speed and completion.

To encourage these positive outcomes, the key people need to meet frequently to exchange information, address problems and discuss plans. Without this kind of coordination and collaboration, it will be impossible to make the most of both sides’ specialist knowledge.

So when it comes to hospitals and clinics, the private company needs to actively seek the involvement of doctors and nurses in the design and construction phases. Similarly, doctors and nurses should not be threatened by private companies, but instead seek to become actively engaged. This will help drive creative design innovations such as the “night sky” ceiling in the children’s ward.

The ConversationIt takes time and resources, but this kind of collaboration and coordination between public and private sectors provides an opportunity to increase value – both economic and social. And that’s something that not only benefits construction companies and health care professionals – but patients and taxpayers, too.

Jens Roehrich, Professor of Supply Chain Innovation, University of Bath

This article was originally published on The Conversation. Read the original article.

Dementia coaching program offers chance to live well

News Release
August 8, 2018 | Australia, Dementia coaching program offers chance to live well

Support available for Sydney residents diagnosed with dementia
A new University of Sydney trial offers coaching and peer support to help people newly diagnosed with dementia cope with their prognosis and stay active and involved in their lives and community.

“I want to try and help people see they can fight back…you can’t just give into it.”

Bobby Redman, Peer supporter living with dementia

Lead researcher Associate Professor Lee-Fay Low said the pilot study has the potential to fill a vital service gap with the latest research suggesting keeping the mind and body active could slow the progression of dementia.

“Following a dementia diagnosis many people withdraw from their friends and family for fear they will deteriorate quickly and can suffer immense grief or depression,” said Low, Associate Professor in Ageing and Health at the University of Sydney.

“There are over 400 000 Australians currently living with dementia and with a cure still some way off it’s essential that we help people with early dementia to live well.

“We hope that giving people the right support, tools and strategies from the onset could help achieve this.”

The Dementia Lifestyle Coach pilot study is a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre.

Participants will receive 14 counselling and coaching sessions from a registered psychologist over a six-month period and will also have a regular phone or skype catch ups with a peer supporter who lives with dementia.


Retired psychologist Bobby Redman is one of the peer supporters involved in the study.

Photo of peer supporter Bobby Redman

Bobby was diagnosed with frontotemporal dementia two and half years ago at age 66 after she noticed problems remembering the names of close friends and an inability to find the right words to express herself.

“My story is a bit different because with my psychology background I knew something was definitely wrong – but a dementia diagnosis is still a shock for anyone,” said Bobby.

“And what’s probably hardest is that, like in my experience, many people with early dementia are just told to come back when things get worse or to get their things in order.

“But I’ve learnt that there are tools and strategies you can put in place to help manage the impact of dementia. Even simple things like using my phone to set daily reminders to drink water and stay hydrated.

“What I’d like to see is more clinicians trained to provide these strategies to people to help them overcome simple issues.

“I want to try and help people see they can fight back. I think that’s the key….you can’t just give into it.”

The pilot study will run over a 12-month period, with researchers aiming to assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.

Participant information

The University of Sydney is trialling a counselling and coaching program for people living at home recently diagnosed with early dementia. To be eligible you must have received a diagnosis of early dementia within the past 6 months. Read more information about the Dementia lifestyle coaching study or contact Dr Annica Barcenilla on +61 2 9351 9837 or annica.barcenilla@sydney.edu.au

 

Dementia could be detected via routinely collected data, new research shows

Media Release
July 11, 2018 | United Kingdom, University of Plymouth – Dementia could be detected via routinely collected data, new research shows

photography of person typing
Photo by Christina Morillo on Pexels.com

Improving dementia care through increased and timely diagnosis is an NHS priority, yet around half of those living with dementia live with the condition unaware.

Now a new machine-learning model that scans routinely collected NHS data has shown promising signs of being able to predict undiagnosed dementia in primary care.

Led by the University of Plymouth, the study collected Read-encoded data from 18 consenting GP surgeries across Devon, UK, for 26,483 patients aged over 65.

The Read codes – a thesaurus of clinical terms used to summarise clinical and administrative data for UK GPs – were assessed on whether they may contribute to dementia risk, with factors included such as weight and blood pressure.

These codes were used to train a machine-learning classification model to identify patients that may have underlying dementia.

The results showed that 84 per cent of people who had dementia were detected as having the condition (sensitivity value) while 87 per cent of people without dementia had been correctly acknowledged as not having the condition (specificity value), according to the data.

These results indicate that the model can detect those with underlying dementia with an accuracy of 84 per cent. This suggests that the machine-learning model could, in future, significantly reduce the number of those living with undiagnosed dementia – from around 50 per cent (current estimated figure) to 8 per cent*.

Principal Investigator Professor Emmanuel Ifeachor, from the School of Computing Electronics and Mathematics at the University of Plymouth, said the results were promising.

“Machine learning is an application of artificial intelligence (AI) where systems automatically learn and improve from experience without being explicitly programmed,” he said. “It’s already being used for many applications throughout healthcare such as medical imaging, but using it for patient data has not been done in quite this way before. The methodology is promising and, if successfully developed and deployed, may help to increase dementia diagnosis in primary care.”

Dr Camille Carroll, Consultant Neurologist at University Hospitals Plymouth NHS Trust and Researcher in the Institute of Translational and Stratified Medicine at the University of Plymouth, collaborated on the research.

She said:

“Dementia is a disease with so many different contributing factors, and it can be quite difficult to pinpoint or predict. There is strong epidemiological evidence that a number of cardiovascular and lifestyle factors such as hypertension; high cholesterol; diabetes; obesity; stroke; atrial fibrillation; smoking; and reduced cognitive, physical, or social activities can predict the risk of dementia in later life, but no studies have taken place that allow us to see this quickly. So having tools that can take a vast amount of data, and automatically identify patients with possible dementia, to facilitate targeted screening, could potentially be very useful and help improve diagnosis rates.”

The full research, entitled ‘Machine-learning based identification of undiagnosed dementia in primary care: a feasibility study’, was led by the University of Plymouth with collaboration from Re:Cognition Health, Plymouth; the University of Edinburgh; University Medical School, Swansea; Northern, Eastern and Western Devon Clinical Commissioning Group (NEW Devon CCG); and the University of St Andrews.

The paper is available to view in the BJGP Open (doi:10.3399/bjgpopen18X101589).

*8 per cent calculated as follows: 50 per cent of dementia sufferers are undiagnosed, and the machine-learning model detected dementia with 84 per cent accuracy. Therefore 84 per cent of these undiagnosed 50 per cent would be diagnosed using this model = 42 per cent. 8 per cent, the number remaining, would remain undiagnosed.

Miss Amy McSweeny – Media and Communications Officer

What good dementia design looks like – A case study on Dementia Training Australia’s work with Scalabrini Village

DTA and Scalabrini Village case study profiled at Alzheimer’s International Conference in Chicago from Dementia Training Australia on Vimeo.

 

A case study on Dementia Training Australia’s work with Scalabrini Village is featured in the program Every Three Seconds, a collaboration between ADI and ITN Productions which highlights the fact that someone in the world is diagnosed with dementia every three seconds.

Source: https://www.dta.com.au/case-studies-dementia-training-australia/

Majority of Older Adults with Probable Dementia Are Likely Unaware They Have It

Media Release
July 17, 2018 | USA, Baltimore – Majority of Older Adults with Probable Dementia Are Likely Unaware They Have It

Less education and unaccompanied medical visits linked to lack of formal diagnosis or awareness of diagnosis

Probable Dementia.jpg

A Johns Hopkins Medicine analysis of information gathered for an ongoing and federally sponsored study of aging and disability adds to evidence that a substantial majority of older adults with probable dementia in the United States have never been professionally diagnosed or are unaware they have been.

A report of the findings was published in the July issue of the Journal of General Internal Medicine. Most of the findings, the researchers say, confirm previous similar estimates, but unaccompanied visits to a doctor or clinic emerged as a newly strong risk factor for lack of formal diagnosis or awareness of diagnosis.

“There is a huge population out there living with dementia who don’t know about it,” says Halima Amjad, M.D., M.P.H., assistant professor of medicine at the Johns Hopkins University School of Medicine and the study’s lead author. “The implications are potentially profound for health care planning and delivery, patient-physician communication and much more,” she says.

Overall, Amjad says, “If dementia is less severe and people are better able to perform day-to-day tasks independently, symptoms of cognitive loss are more likely masked, especially for patients who visit the doctor without a family member or friend who may be more aware of the patient’s symptoms.”

An estimated 5.7 million people in the United States live with dementia, according to the Alzheimer’s Association, but only half of those have a documented, official diagnosis by a physician. Timely diagnosis is important for maintaining or improving health and planning care, says Amjad, so it’s important to identify which populations are less likely to be diagnosed or less likely to be aware of their diagnosis.

Building on previous research, which identified activities and living conditions linked to dementia diagnosis, Amjad sought this time to pinpoint at-risk populations nationwide.

To do so, Amjad and the research team drew on data from the National Health and Aging Trends Study, an ongoing study of Medicare recipients ages 65 and older across the United States, and selected those who met criteria for probable dementia in 2011 and had three years of continuous fee-for-service Medicare claims before 2011. The latter information helped the researchers determine whether participants’ physicians had billed for dementia diagnosis and/or care.

The research team identified 585 such adults and examined demographic data such as highest level of education attained, race/ethnicity and income, as well as data on whether participants were able to perform activities such as laundry, shopping or cooking on their own.

Among those with probable dementia, 58.7 percent were determined to be either undiagnosed (39.5 percent) or unaware of their diagnosis (19.2 percent).

Participants who were Hispanic, had less than a high school education, attended medical visits alone or were deemed more able to perform daily tasks were more likely to be undiagnosed. Specifically, those with at least a high school education had a 46 percent lower chance of being undiagnosed compared with those who had less education; and those who attended medical visits alone were twice as likely to be undiagnosed than those who were accompanied.

Participants who were diagnosed but unaware of their diagnosis had less education, attended visits alone more often and had fewer functional impairments. Those with at least a high school education had a 58 percent lower chance of being unaware compared with those who had less education. Those who attended medical visits alone were about twice as likely to be unaware than those who were accompanied. Each activity impairment decreased the chance of being unaware of diagnosis by 28 percent.

While Amjad acknowledges that the study is limited by potentially inaccurate self-reporting of dementia diagnoses, possible discrepancies between medical record documentation and billing codes, and the use of older data, she says the findings will likely help physicians be more alert to people who may need more careful screening.

“There are subsets of people doctors can focus on when implementing cognitive screening, such as minorities, those with lower levels of education and those who come in by themselves,” says Amjad.

Looking forward, Amjad plans to study whether documentation of a dementia diagnosis is meaningful if patients and family members don’t understand what a diagnosis means.

Other authors of the report include David L. Roth, Orla C. Sheehan, Constantine G. Lyketsos, Jennifer L. Wolff and Quincy M. Samus, all of Johns Hopkins.

Funding for this study was provided by The National Health and Aging Trends Study (NHATS) sponsored by the National Institute on Aging (U01AG032947). Amjad received funding from the National Center for Advancing Translational Sciences/Johns Hopkins Institute for Clinical and Translational Research (KL2TR001077).

Commonly prescribed medications linked to rise in harmful side effects in dementia

News Release
July 2018 | United Kingdom – Commonly prescribed medications linked to rise in harmful side effects in dementia

Medications which are commonly prescribed to people with dementia have been linked to an increase in harmful side-effects, research involving the University of Exeter has concluded.

antibiotic blur cocktail glass cocktail tablets
Photo by Pixabay on Pexels.com

The research, presented at the Alzheimer’s Association International Conference (AAIC) examined the impact of opioid-based painkillers or a class of sleep medication known as Z drugs (zolpidem, zopiclone and zaleplon). They are prescribed to an estimated 200,000 with dementia living in care homes across the UK in total.

In the opioid painkiller research, a team from the University of Exeter, King’s College London and the University of Bergen highlight a tripling in harmful side effects related to the use buprenorphine in people with dementia, compared to those on a placebo. Researchers also identified a mechanism that may be causing the problem.

In a randomized controlled trial of 162 Norwegian care home residents, the team found a significant rise in side effect such as personality changes, confusion and sedation, which can seriously impact people’s lives in dementia. The trial team, led by the University of Bergen, studied 162 people from 47 Norwegian care homes who had advanced dementia and significant depression. In those who were assigned buprenorphine as part of their treatment pathway, harmful side-effects more than tripled. The researchers also found that those taking buprenorphine were significantly less active during the day.

In the Z-drugs research, the team compared data for 2,952 people with dementia who were newly prescribed the medication with data for 1,651 who were not – in order to evaluate the benefits and harms of the medicines. They found that people who take Z-drugs are more likely to fracture a bone than those who do not. Bone fractures are related in turn to an increased risk of death in people with dementia.

Researchers are now calling for studies to examine alternative non-drug approaches to treating pain and insomnia, and appropriate dosing of painkillers such as buprenorphine for people with dementia. Clive Ballard, Professor of Age-Related Diseases at the University of Exeter Medical School, said: “Research into antipsychotics highlighted that they increased harmful side effects and death rates in people with dementia. This compelling evidence base helped persuade everyone involved in the field to take action, from policy makers to clinicians, reducing prescribing by 50 per cent. We now urgently need a similar concerted approach to opioid-based painkillers and Z-drugs, to protect frail elderly people with dementia from fractures and increased risk of death.”

Importantly, research led by Professor Ballard’s team and also presented at the conference also gives insight into the mechanism of why people with dementia are more susceptible to opioid-based painkillers, suggesting they over-produce the body’s natural opioids.

The study treating arthritis in Alzheimer’s mice found increased sensitivity to the opioid-based painkiller morphine in mice with Alzheimer’s disease compared to those without. Those with Alzheimer’s disease responded to a much lower dose to ease pain, and experienced more adverse effects when the dose was increased to a normal level. Looking into this further the study found that the Alzheimer’s mice produced more of the body’s natural endogenous opioids such as endorphins. The study, presented as a poster at AAIC, also concludes that dosing of opioid-based painkillers urgently needs to be reviewed in people with dementia to enable safe and effective treatment of pain, and prevent unnecessary harm and deaths.

Posters presented at conference have not yet been through the journal peer review process.

Watch carers talk about their experience of the WHELD training. To find out more about our world-leading dementia research, follow #ExeterDementia and @Clive_Ballard on Twitter, or visit the Exeter Dementia website.

Just ten minutes of social interaction a day improves wellbeing in dementia care

News Release
July 2018 | United Kingdom – Just ten minutes of social interaction a day improves wellbeing in dementia care

An e-learning programme that trains care home staff to engage in meaningful social interaction with people who have dementia improves wellbeing and has sustained benefits.

couple elderly man old
Photo by Pixabay on Pexels.com

The average person with dementia in a care home experiences just two minutes of social interaction each day, researchers found. They also showed that out of 170 available training programmes for nursing home staff, only three are evidence-based – none of which improve quality of life.

The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.

The Improving Staff Attitudes and Care for People with Dementia e-Learning (tEACH) study, conducted by the University of Exeter Medical School and King’s College London in partnership with the Social Care Institute for Excellence (SCIE), was presented at the Alzheimer’s Association International Conference 2018. The study involved 280 residents and care staff in 24 care homes over nine months.

Carers took part in an e-learning programme based on the WHELD training, with or without Skype supervision. They compared outcomes to usual care. Both treatment arms improved resident wellbeing and staff attitudes to person-centred care. The Skype supported arm continued to deliver improved resident wellbeing four months after the trial was completed.

Joanne McDermid, of King’s College London, who presented the research, said: “Care home staff are under a lot of pressure – it’s a really tough job. It’s a challenging environment for both residents living with dementia and staff. Our programme moved care staff to see dementia through the eyes of those who are living it. We found a simple approach, delivered as e-learning, improves staff attitudes to care and residents’ wellbeing, ultimately improving lives for people with dementia.

“In a traditionally task -focussed work environment, our programme reminds us of the human side; of the full life experience of those living with dementia in care.”

Professor Clive Ballard, of the University of Exeter Medical School, who led the research, said: “Just take a moment to imagine life with just two minutes of social interaction each day. To accept this is discrimination against people with dementia. We urgently need to do better. Most care home training programmes are not evidence-based. We know our programme works over the long term, and we now know it can be delivered remotely. We now need to roll this out to care homes.”

Watch carers talk about their experience of the WHELD training. To find out more about our world-leading dementia research, follow #ExeterDementia and @Clive_Ballard on Twitter, or visit the Exeter Dementia website.

Green roofs improve the urban environment – so why don’t all buildings have them?

Green roofs improve the urban environment – so why don’t all buildings have them?

USEPA/Flickr.

Michael Hardman, University of Salford and Nick Davies, University of Salford

Rooftops covered with grass, vegetable gardens and lush foliage are now a common sight in many cities around the world. More and more private companies and city authorities are investing in green roofs, drawn to their wide-ranging benefits which include savings on energy costs, mitigating the risk from floods, creating habitats for urban wildlife, tackling air pollution and urban heat and even producing food.

A recent report in the UK suggested that the green roof market there is expanding at a rate of 17% each year. The world’s largest rooftop farm will open in Paris in 2020, superseding similar schemes in New York City and Chicago. Stuttgart, in Germany, is thought of as “the green roof capital of Europe”, while Singapore is even installing green roofs on buses.

These increasingly radical urban designs can help cities adapt to the monumental challenges they face, such as access to resources and a lack of green space due to development. But buy-in from city authorities, businesses and other institutions is crucial to ensuring their success – as is research investigating different options to suit the variety of rooftop spaces found in cities.

A growing trend

The UK is relatively new to developing green roofs, and governments and institutions are playing a major role in spreading the practice. London is home to much of the UK’s green roof market, mainly due to forward-thinking policies such as the 2008 London Plan, which paved the way to more than double the area of green roofs in the capital.

Although London has led the way, there are now “living labs” at the Universities of Sheffield and Salford which are helping to establish the precedent elsewhere. The IGNITION project – led by the Greater Manchester Combined Authority – involves the development of a living lab at the University of Salford, with the aim of uncovering ways to convince developers and investors to adopt green roofs.

Ongoing research is showcasing how green roofs can integrate with living walls and sustainable drainage systems on the ground, such as street trees, to better manage water and make the built environment more sustainable.

Research is also demonstrating the social value of green roofs. Doctors are increasingly prescribing time spent gardening outdoors for patients dealiong with anxiety and depression. And research has found that access to even the most basic green spaces can provide a better quality of life for dementia sufferers and help prevent obesity.

An edible roof at Fenway Park, stadium of the Boston Red Sox.
Michael Hardman, Author provided

In North America, green roofs have become mainstream, with a wide array of expansive, accessible and food-producing roofs installed in buildings. Again, city leaders and authorities have helped push the movement forward – only recently, San Francisco created a policy requiring new buildings to have green roofs. Toronto has policies dating from the 1990s, encouraging the development of urban farms on rooftops.

These countries also benefit from having newer buildings, which make it easier to install green roofs. Being able to store and distribute water right across the rooftop is crucial to maintaining the plants on any green roof – especially on “edible roofs” which farm fruit and vegetables. And it’s much easier to create this capacity in newer buildings, which can typically hold greater weight, than retro-fit old ones. Having a stronger roof also makes it easier to grow a greater variety of plants, since the soil can be deeper.

The new normal?

For green roofs to become the norm for new developments, there needs to be buy-in from public authorities and private actors. Those responsible for maintaining buildings may have to acquire new skills, such as landscaping, and in some cases volunteers may be needed to help out. Other considerations include installing drainage paths, meeting health and safety requirements and perhaps allowing access for the public, as well as planning restrictions and disruption from regular ativities in and around the buildings during installation.

To convince investors and developers that installing green roofs is worthwhile, economic arguments are still the most important. The term “natural capital” has been developed to explain the economic value of nature; for example, measuring the money saved by installing natural solutions to protect against flood damage, adapt to climate change or help people lead healthier and happier lives.

As the expertise about green roofs grows, official standards have been developed to ensure that they are designed, built and maintained properly, and function well. Improvements in the science and technology underpinning green roof development have also led to new variations on the concept.

For example, “blue roofs” increase the capacity of buildings to hold water over longer periods of time, rather than drain away quickly – crucial in times of heavier rainfall. There are also combinations of green roofs with solar panels, and “brown roofs” which are wilder in nature and maximise biodiversity.

If the trend continues, it could create new jobs and a more vibrant and sustainable local food economy – alongside many other benefits. There are still barriers to overcome, but the evidence so far indicates that green roofs have the potential to transform cities and help them function sustainably long into the future. The success stories need to be studied and replicated elsewhere, to make green, blue, brown and food-producing roofs the norm in cities around the world.


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Michael Hardman, Senior Lecturer in Urban Geography, University of Salford and Nick Davies, Research Fellow, University of Salford

This article is republished from The Conversation under a Creative Commons license. Read the original article.