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.




Read more:
Our culture affects the way we look after ourselves. It should shape the health care we receive, too


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.




Read more:
Between health and faith: managing type 2 diabetes during Ramadan


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.




Read more:
How to check if your mum or dad’s nursing home is up to scratch


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.

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.
Shutterstock

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’.

Our ailing aged care system shows you can’t skimp on nursing care

The royal commission has scrutinised aged care staffing.
From shutterstock.com

Apil Gurung, University of the Sunshine Coast and Samantha Edwards, University of the Sunshine Coast

Staff shortages and a lack of training have once again emerged as key issues underpinning the nation’s aged care crisis, as the aged care royal commission hears testimony in Perth.

Registered nurse Noleen Hausler shared the experience of her 98-year-old father, Clarence, who was force-fed, assaulted and had a serviette held over his nose by a carer who was later convicted of aggravated assault.

Aside from this criminal behaviour, Ms Hausler said the standards at her father’s aged care facility declined after a new operator reduced staffing levels and employed carers with little training. Call bells went unanswered, she said, and incontinence pads were rationed.

Ms Hausler has called for increased ratios of registered nurses in aged care facilities, and better training and registration for carers.

Under-staffing and inadequate training have long been problems in Australia’s aged care facilities, with aged care facilities employing fewer registered and enrolled nurses and more carers who have lower levels of training.




Read more:
Nearly 2 out of 3 nursing homes are understaffed. These 10 charts explain why aged care is in crisis


Who does what in aged care?

A registered nurse (RN) provides nursing leadership and clinical supervision in aged care facilities. They are skilled clinicians who can respond to medical emergencies and are qualified to carry out assessments.

Registered nurses undergo three years of undergraduate study at university and are registered with the Australian Health Practitioner Regulation Agency (AHPRA) in order to practise in health care setting across Australia.

An enrolled nurse (EN) conducts observations and assessments, and collaborates with and seeks assistance from the registered nurse in charge. Enrolled nurses are registered with AHPRA and undergo an 18-month diploma of nursing at TAFE.

Finally, care workers form the bulk of the aged care workforce and perform tasks such as showering, dressing and feeding residents. Titles for carers vary and include assistant in nursing, personal care worker, personal care attendant, and aged care worker, to name a few.

Care workers are required to complete a certificate III-level course, which can take up to six or seven months, but don’t require registration.

Carers cost less than nurses

There is no clear legislation requiring a certain number of registered nurses, enrolled nurses and carers to be on duty at certain point in time. The Aged Care Act 1997 is open to interpretation, so aged care providers are largely free to set their own staffing levels.

As a result, in recent years aged care operators have recruited proportionally fewer registered and enrolled nurses and increasing numbers of unregulated carers.

Residents in aged care have complex needs, and those looking after them need to be equipped.
From shutterstock.com

The changing make up of the aged care workforce is mainly influenced by economic advantage: hiring carers is cheaper than hiring registered or enrolled nurses.

It can also be difficult to find enough nurses. Nurse retention in aged care has been a major challenge for the industry because aged care providers often pay lower wages than hospitals.

But nursing care is worth the investment

Research shows having a greater number of registered nurses increases patients’ well-being and safety. Better staffing levels allow nurses to spend more time caring for residents and reduces the likelihood that vital information is overlooked.

Adequately staffing aged care facilities has economic benefits by reducing staff turnover related to burnout and job dissatisfaction.

Employing skilled registered nurses in aged care facilities can also save the health system money by reducing the number of costly hospital admissions that arise because residents can’t be adequately cared for in their aged care facility.




Read more:
Want to improve care in nursing homes? Mandate minimum staffing levels


Aged care residents often have mental health issues, face cognitive decline or dementia, take multiple medications each day, are physically frail, and often have multiple chronic conditions such as heart disease, diabetes, cancer, arthritis or asthma.

But it’s difficult to meet the needs of these patients with the current aged care staffing and skill levels.

More than 50% of the residents in a residential aged care facilities have some form of dementia, for example, yet more than 50% of aged care workers have no dementia training.

Substituting registered nurses with lesser skilled carers has meant tasks such as medication management have been assigned to carers in some aged care facilities, despite this being a high-risk task that requires a high level of skill and experience.

What are the solutions?

Carers currently make up around 70% of the aged care workforce. We need to reset aged care staffing levels and ensure we have the right skill sets, which industry bodies suggest is: 30% registered nurses, 20% enrolled nurses and 50% care workers.

It’s also time to professionalise caring roles with better regulation and the introduction of carer registration.

Registration would clarify carers’ roles and allow only the delegation of tasks which are deemed safe for carers to carry out within their scope of practice. It would also ensure minimum training standards are met and that quality and safety is maintained.

The aim is not to vilify carers, who are the backbone of our aged care system, but rather to highlight the need for the right level of training, education and support to strengthen the aged care workforce and complement the care provided by registered and enrolled nurses.

Finally, we also need to increase the number of registered and enrolled nurses in the aged care workforce with guided pathways to attract and retain nurses. Well-structured graduate nurse programs, for instance, can provide support and guidance to the graduates who are considering a career in aged care.




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


The Conversation


Apil Gurung, Lecturer, University of the Sunshine Coast and Samantha Edwards, Lecturer in Nursing, University of the Sunshine Coast

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