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.

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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.


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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.

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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.

8 Residents in a care home and it costs no more than a regular care home in Switzerland

8 Residents in a care home and it costs no more than a regular care home in Switzerland. Watch the videos to find out more. Please note that in the first video the language does not adhere to dementia language guidelines.

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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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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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.

University of Wollongong students take dementia-friendly home to Dubai

News Release
May 2017 | Australia – University of Wollongong students take dementia-friendly home to Dubai

Source: Dementia Australia

Meet Desert Rose, a state-of-the-art home of the future, for the future.

Designed by students from the University of Wollongong (UOW) and TAFE Illawarra, Desert Rose boasts a mix of dementia-friendly features and building design elements, many of which are not currently available on the market and won’t be for another five or 10 years.

Not something out of a sci-fi movie Professor Tim McCarthy, Faculty Advisor for Team UOW Australia-Dubai, hopes Desert Rose will become a new standard in age-friendly design and win Team UOW their second Solar Decathlon when they take their design to Dubai in 2018.

“Desert Rose is a house for life, catering for a couple who are currently active and considering their future, say in their mid-fifties,” Professor McCarthy said.

“They are downsizing to a comfortable, beautiful and bill-free home. The house has features that enable it to adapt to possible future needs resulting from age-related disabilities. It encourages wellness.”

Desert Rose is also dementia-friendly and largely inspired by the work of Dementia Training Study Centre director Professor Richard Fleming and Research Fellow at the Centre for Health Initiatives Dr Lyn Phillipson, both also from UOW.

Professor McCarthy said consultation with members of the Kiama Dementia Alliance and Advisory Group initially influenced the design and evaluation of the prototypes as they arise would include the group and other consumer networks.

Dementia-friendly design elements featured in Desert Rose include:

Line of sight to key facilities – a person with dementia is eight times more likely to use the toilet (especially at night) if they can see the toilet bowl, the occupant of Desert Rose can see the bowl from their position in bed and from the lounge.
Accessibility for people with limited mobility – doors and furniture allow easy navigation with a walking frame, which typically requires a greater turning circle than a wheelchair.
No steps – you can drive a mobility scooter into the kitchen to unload shopping.
Strong points – located in the wall frames allowing railings to fix to the bathroom wall and other places as needed. The ceiling in the bedroom has a built in strongpoint for connecting a hoist to get the person in and out of bed should the need arise.
Sensors – activity monitoring using ubiquitous, but not intrusive technologies such as, low-resolution special infrared sensors that can recognise if someone is standing or lying down, or has fallen. Sensors in the bed can detect is the occupant has woken in the night which can trigger the bathroom light to turn on, followed by the vanity and then back to bed. “Ushering” like this can assist a person with dementia to function without the intervention of a carer. The house can learn the normal patterns of activity and trigger alarms for anomalies.
Professor McCarthy said UOW research into user-acceptance informed the technologies and sensors, which could not be used as a fix-all. He acknowledged some people, may react badly to some forms of monitoring.

Thermal comfort, contrasting colours (especially in the bathroom), brightness, mood and colour controlled LED lighting and retro looking devices are also important features of Desert Rose.

“Research at the Sustainable Buildings Research Centre, co-supervised by Professor Fleming, has shown that thermal comfort is very important for the care of people living with dementia,” Professor McCarthy said.

“If the person becomes too hot, sweaty or cold, it can cause anxiety and agitation which may lead to changes in behaviour, sedative use and so on. Our work by Federico Tartarini has shown that by controlling the temperature and humidity, people with dementia are happier.”

The Solar Decathlon is an international competition that requires teams to design and build an affordable and architecturally beautiful, net-zero energy house.

The full-sized house must then be transported to the competition site in Dubai to compete against the top universities and vocational education and training providers from around the world.

Twenty-two teams from 16 different countries will come together for the Solar Decathlon Middle East 2018 finals held in Dubai in November – including Team UOW and Desert Rose.

Professor McCarthy said the thermal comfort aspects of Desert Rose fit well with the Solar Decathlon competition, as the house must remain between 22 and 25 degrees Celsius with humidity below 65% at all times.

“Excellent insulation and air tightness help us to maintain these settings while using very little energy for heating and cooling,” Professor McCarthy said.

Professor McCarthy said while it was not common for Australian homes (even new ones build to current code) to display such air tightness and energy efficiency, it is common in countries such as Germany where they have developed the Passivhaus standard.

The features of Desert Rose are built-in from day one and allow for easy adaptation later.

“They can be difficult to retrofit to an existing house if they have not been pre-planned while other aspects are easier to retrofit,” he said.

While ultra-modern in terms of technology and design, the home uses retro looking devices with modern abilities.

“We will avoid many new-fangled devices, which would be unfamiliar to a person living with dementia,” Professor McCarthy said.

“Many people revert to what they experienced in their twenties or a particular period of their lives. Simple tap fixtures, lighting controls and communications devices are often better than the ultra-modern or automatic devices.

“How often have you been in a public bathroom and not known how to turn on the water – or if it will turn off automatically? The taps in Desert Rose can look familiar but have built-in safety and water saving features, heat limits to prevent scalding, a reminder to turn off (might be a voice prompt) and an automatic shut-off if a tap is left running too long.”

Professor McCarthy said this was just a snapshot of Desert Rose and that Team UOW were keeping a few tricks up their sleeve ahead of the competition.

“Of the 22 teams who are designing and building net-zero energy homes, Team UOW are the only team targeting this most important social issue,” he said.

Professor McCarthy said even in United Arab Emirates where the population is relatively young, the demographics showed that by 2050 this will have changed with over 20% of their population being over 65.

“So we believe that our house which has been named Desert Rose, after Sturt’s Desert Rose (a flower that blooms in the most difficult circumstances) is a vital part of preparing not just Australia, but also the Middle East for the need of our ageing populations,” he said.

“What is so great about this is that every aspect of the concept has come from our students. They are demonstrating real leadership in tackling our current and future housing needs.”

With a lot of interest from developers of retirement living units and age care providers Professor McCarthy hopes the dementia-friendly features of Desert Rose may be available on the market and part of the Australian Building Code more quickly.

Keep up-to-date with the latest news from Team UOW’s Desert Rose(link is external) and the Solar Decathlon Middle East 2018.

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

File 20180601 69501 e0s4yh.jpg?ixlib=rb 1.1
Personalised care that lets people feel as though they’re living independently is better.
from http://www.shutterstock.com

Suzanne Dyer, Flinders University and Stephanie Harrison, Flinders University

A new study out today has found residents with dementia in aged-care facilities that provide a home-like model of care have a better quality of life and fewer hospitalisations than those living in more standard facilities. We also found the benefits of a home-like model were provided without an increase in running costs.

Our study compared home-like models (which have up to 15 residents per unit and free access to outdoor areas) to more standard residential care, where a large number of people are housed in one building. In 2011, around half of all facilities in Australia had places for more than 60 residents, and the average size is growing.

The World Health Organisation has stated smaller home-like residential care settings “hold promise for older people, family members and volunteers who provide care and support”. But Australia is lagging behind other countries in offering alternative models of residential aged care.




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


What is a home-like model of care?

Most older people with dementia 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 homes.

These residential facilities, or nursing homes, frequently adopt a model of care that emphasises individuality. This is known as person-centred care. But delivering this model may require more staff or a different mix of staff, which may be difficult to deliver with current funding.

So standard aged-care facilities in Australia often have some similarities to health facilities, with designated staff areas and centralised kitchens. Access to outdoor areas, particularly for people with dementia, may depend on the availability of staff. Despite adhering to philosophies such as person-centred care, the scheduling of this care and of meals often lacks flexibility.

The problems are compounded when residential care is used for multiple purposes ranging from palliative care to providing care for people with dementia. The needs of these two groups are quite different and the lack of focus makes delivering quality care a challenge.

Evidence shows the physical design of the residential aged-care environment may play an important role in the well-being of residents, particularly those living with dementia. Internationally, there is a move towards providing care in facilities that feel more like a home and promote independence.

Such models of residential aged care generally have:

  • flexibility in daily routines – for example, the time people get dressed and eat
  • opportunity for residents to participate in domestic activities such as meal preparation
  • access to outdoor spaces
  • clusters of smaller living units (up to, say, 15 residents in each)
  • care staff assigned to living units for continuity of care and development of relationships between staff and residents.



Read more:
God’s waiting room? Life needs to be valued in nursing homes


Being involved in simple tasks such as food preparation can improve quality of life.
from http://www.shutterstock.com

What we found

Our study was specifically designed to include people with dementia and their family members. People with dementia are not often included in research studies.

It included 541 participants from 17 not-for-profit residential aged-care facilities in four different states in Australia. They had been residents for a year or longer.

These facilities were all considered high quality. This means they had lower hospitalisation rates for potentially avoidable conditions than the national performance target. And more than 80% of residents in the standard care facilities indicated they felt as safe as they wanted and that their environment was as clean and comfortable as they wanted.

Around one-quarter of people in the study lived in a facility with a home-like model of care. All of them were living with dementia.

The study found residents in home-like models of care had a better quality of life, as rated by the residents themselves or their family members. They also had a 68% lower rate of being admitted to hospital and 73% lower rate of having an emergency department presentation.

We have previously shown residents who lived in a home-like model were 52% less likely to be exposed to potentially inappropriate medications. These are medications where the potential harms may outweigh the benefit, such as antipsychotics or relaxants, but are still often prescribed to older people in residential care.

The benefits for residents were provided with similar running costs for the home-like and the standard models of care. However, the costs excluded differences in the build of the facilities. Initial establishment costs are likely to be higher, due to the requirement for more space per resident.




Read more:
There is extra funding for aged care in the budget, but not enough to meet demand


Rethinking models of care

Funding arrangements don’t incentivise Australian aged-care providers to offer variety in terms of models of care. Government funding is provided based on the assessed care needs of the residents, rather than the preferred model of care or resident outcomes.

Funding supplements are available to care providers for reasons such as residents’ financial hardship or risk of homelessness and to small, rural aged-care service providers, but none are available for offering an alternative model of care.

The ConversationThe Australian government plans to improve the aged-care system to offer “choice and flexibility”. This is crucial, but we also need to improve choice and variety in residential aged-care models.

Suzanne Dyer, Senior Research Fellow, Flinders University and Stephanie Harrison, Postdoctoral research fellow, Flinders University

This article was originally published on The Conversation. Read the original article.

Practice Imperfect: Repeated Cognitive Testing Can Obscure Early Signs of Dementia

News Release
July 11, 2018 | California – Practice Imperfect: Repeated Cognitive Testing Can Obscure Early Signs of Dementia

blue and silver stetoscope

Photo by Pixabay on Pexels.com

Alzheimer’s disease (AD) is a progressive, neurodegenerative condition that often begins with mild cognitive impairment or MCI, making early and repeated assessments of cognitive change crucial to diagnosis and treatment.

But in a paper published online in the journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, a team of researchers led by scientists at the University of California San Diego School of Medicine found that repeated testing of middle-age men produced a “practice effect” which obscured true cognitive decline and delayed detection of MCI.

“When persons take the same or similar tests repeatedly over time, they simply get better at taking the tests,” said first author Jeremy A. Elman, PhD, a postdoctoral fellow in the lab of senior author William S. Kremen, PhD, professor of psychiatry and co-director with Carol E. Franz, PhD, of the Center for Behavior Genetics of Aging at UC San Diego School of Medicine. “The consequence is that their results may not accurately reflect the reality of their condition.”

Researchers re-tested 995 middle- to late-middle-aged men in a six-year follow-up of the Vietnam Era Twin Study of Aging (a longitudinal study of male-male twins who had all served in the military sometime between 1965 and 1975, though almost 80 percent reported no combat exposure). A second group of 170 age-matched males were tested for the first time. Group differences were used to calculate practice effects.

The scientists found that there were significant practice effects in most cognitive domains, and diagnoses of MCI doubled from 4.5 to 9 percent after correcting for practice effects. “In other words,” said Kremen, “some men would have declined to levels indicating impairment on follow-up testing had they not been exposed to the tests before.”

The authors said the disparity has significant clinical consequences. Consider, for example, two people with similar characteristics who have identical cognitive test scores just above the threshold for an MCI diagnosis. The only difference: One individual is being tested for the first time while the other has taken such tests before.

“We can infer that the second individual may actually have more impairment, but the effects of practice are artificially increasing their scores,” wrote the authors. “This scenario would suggest that the individual may have dipped below the norm-based threshold and would have been diagnosed as having MCI had the test been taken for the first time.”

The clinical significance, they said, is that treatment for AD is shifting increasingly toward prevention strategies that rely on early identification. The researchers say their findings strongly suggest the importance of correcting for practice effects in longitudinal studies of older adults, such as using similar replacement persons taking the test for the first time.

Co-authors of the study include: Amy J. Jak, UC San Diego and Veterans Affairs San Diego Healthcare System; Matthew S. Panizzon, Daniel E. Gustavson, Xin M. Tu, Carol E. Franz and Sean N. Hatton, UC San Diego; Tian Chen, University of Toledo; Chandra A. Reynolds, UC Riverside; Kristen C. Jacobson, University of Chicago; Rosemary Toomey, Ruth McKenzie and Michael J. Lyons, Boston University; and Hong Xian, St. Louis University and VA St. Louis Healthcare System.

Funding for this research came, in part, from the National Institutes of Health (R01s AG018386, AG022381, AG022982, AG050595, AG018384; R03 AG046413, K08 AG047903).

Scott LaFee, 858-249-0456 slafee@ucsd.edu

Reference:

Elman, Jeremy & J. Jak, Amy & Panizzon, Matthew & M. Tu, Xin & Chen, Tian & Reynolds, Chandra & Gustavson, Daniel & Franz, Carol & Hatton, Sean & C. Jacobson, Kristen & Toomey, Rosemary & McKenzie, Ruth & Xian, Hong & Lyons, Michael & Kremen, William. (2018). Underdiagnosis of mild cognitive impairment: A consequence of ignoring practice effects. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring. 10.1016/j.dadm.2018.04.003.

Never stop doing little things for others. Sometimes these little things occupy the biggest part of their hearts.

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Neglect common in English care homes

News Release
March 21, 2018 | London – Neglect common in English care homes

The largest-ever survey of care home staff in England, led by UCL researchers, has found that neglectful behaviours are widespread.

Elder care

For the study, published today in PLOS ONE, care home staff were asked anonymously about positive and negative behaviours they had done or had witnessed colleagues doing.

Dr Claudia Cooper (UCL Psychiatry), the study’s lead author, said: “We found low rates of verbal and physical abuse; the abusive behaviours reported were largely matters of neglect.

“These behaviours were most common in care homes that also had high rates of staff burnout, which suggests it’s a consequence of staff who are under pressure and unable to provide the level of care they would like to offer.”

From 92 care homes across England, 1,544 care home staff responded to the survey. The staff were asked whether they had, in the past three months, witnessed a range of positive and negative behaviours. Their responses were linked to data from each care home describing a measure of burnout in care home staff.

Some negative behaviours were categorised as ‘abusive’, using a standard definition,* and based on the behaviour reported, rather than the intention of the care home staff. The most common abusive behaviours were: making a resident wait for care (26% of staff reported that happening); avoiding a resident with challenging behaviour (25%); giving residents insufficient time for food (19%); and taking insufficient care when moving residents (11%). Verbal abuse was reported by 5% of respondents, and physical abuse by 1.1%.

At least some abuse was identified in 91 of the 92 care homes.

Positive behaviours were reported to be much more common than abusive behaviours, however some positive but time-consuming behaviours were notably infrequent.  For instance, more than one in three care home staff were rarely aware of a resident being taken outside of the home for their enjoyment, and 15% said activities were almost never planned around a resident’s interests.

“Most care homes, and their staff, strive to provide person-centred care, meaning that care is designed around a person’s needs, which requires getting to know the resident and their desires and values. But due to resources and organisational realities, care can often become more task-focused, despite intentions and aspirations to deliver person-centred care,” said co-author Dr Penny Rapaport (UCL Psychiatry).

“Carers can’t just be told that care should be person-centred – they need to be given the support and training that will enable them to deliver it,” she said.

The study is part of the UCL MARQUE cohort study, which is also looking into cost-effective interventions to improve the quality of care for people with dementia, and will be using this anonymous reporting as a measure of how well training interventions are working.

More than two thirds of care homes residents have dementia. Agitated behaviours such as pacing, shouting or lashing out are more common in dementia, and can make provision of person-centred care very challenging for care staff to deliver, often with minimal training and limited resources.

“With the right training, care home staff may be able to deliver more effective care that doesn’t need to be more expensive or time-consuming. If they understand and know how to respond to behaviour, they may be able to do more without greater resources,” said the study’s senior author, Professor Gill Livingston (UCL Psychiatry).

Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, commented: “70% of people living in care homes have dementia, and it’s clear from these findings that they’re bearing the brunt of a chronically underfunded social care system.

“It’s upsetting but unsurprising that abusive behaviours were more common in homes with higher staff burnout. We’ve heard through our helpline of people with dementia not being fed, or not getting the drugs they need, because a carer isn’t properly trained, or a care home is too short-staffed.

“By 2021, a million people in the UK will have dementia. The government must act now, with meaningful investment and reform, or we risk the system collapsing completely and people with dementia continuing to suffer needlessly.”

The study was conducted by researchers at UCL and the Camden and Islington NHS Foundation Trust, and funded by the Economic and Social Research Council and the National Institute for Health Research.

Links

Image

Media contact

Chris Lane

Tel: +44 (0)20 7679 9222

Email: chris.lane [at] ucl.ac.uk

Tips to tackle family tension around alzheimer’s

family tips

A useful infographic for families.

Source: https://www.alz.org/documents_custom/ABAMInfographicTipsToTackleFamilyTension.pdf

How Alzheimer’s disease spreads throughout the brain

File 20180105 26154 13d7znc.png?ixlib=rb 1.1
Harmful tau protein spreads through networks.
Author provided

Thomas E Cope, University of Cambridge

Alzheimer’s disease is a devastating brain illness that affects an estimated 47m people worldwide. It is the most common cause of dementia in the Western world. Despite this, there are currently no treatments that are effective in curing Alzheimer’s disease or preventing its relentless progression.

Alzheimer’s disease is caused by the build-up of two abnormal proteins, beta-amyloid and tau. Tau is particularly important because it causes neurons and their connections to die, preventing brain regions from communicating with each other normally. In the majority of cases, tau pathology first appears in the memory centres of the brain, known as the entorhinal cortex and hippocampal formation. This has been shown to occur many years before patients have any symptoms of disease.

Over time, tau begins to appear in increasing quantities throughout the brain. This causes the characteristic progression of symptoms in Alzheimer’s diseases, where initial memory loss is followed by more widespread changes in thinking and behaviour that lead to a loss of independence. How this occurs has been controversial.

Transneuronal spread

In our study, published in Brain, we provide the first evidence from humans that tau spreads between connected neurons. This is an important step, because stopping this spread at an early stage might prevent or freeze the symptoms of Alzheimer’s disease.

This idea, called “transneuronal spread”, has been proposed before and is supported by studies in mice. If abnormal tau is injected into a healthy mouse brain, it quickly spreads and causes the mice to manifest dementia symptoms. However, it had not previously been shown that this same process occurs in humans. The evidence from mouse studies was controversial, as the amount of tau injected was relatively high, and disease progression occurred much more rapidly than it does in humans.

Artist’s impression of tau spreading between connected neurons.
Author provided

In our study, we combined two advanced brain imaging techniques. The first, positron emission tomography (PET), allows us to scan the brain for the presence of specific molecules. With this, we were able to directly observe the abnormal tau in living patients, to see exactly how much of it was present in each part of the brain.

The second, functional magnetic resonance imaging (fMRI), measures blood flow in the brain in real time. This allowed us to observe the activity produced by brain regions communicating with each other. For the first time, by scanning the same people with both methods, we were able to directly relate the connections of the brain to the distribution of abnormal tau in living humans with Alzheimer’s disease.

We used a mathematical technique called “graph analysis” to analyse brain connectivity. This technique involved splitting the brain up into 598 regions of equal size. We then treated the connectivity between regions like a social network, assessing factors such as the number of contacts a brain region had, how many “friendship” groups it took part in, and how many of a brain region’s contacts were also contacts of each other.

In a flu epidemic, people with a large number of social contacts are most likely to become infected and then to pass the infection on to others. Similarly, the transneuronal spread hypothesis predicts that strongly connected brain regions will accrue most tau. This is what we observed. This relationship was present within each brain network individually, as well as across the whole brain.

We were also able to exclude potential alternative explanations for the appearance of tau throughout the brain. It had previously been suggested that tau might appear at brain regions that were vulnerable because of high metabolic demand or a lack of support from their neighbours. While it is possible that these factors are important in neuronal death, our observations were not consistent with them being the primary drivers of the initial accumulation of abnormal tau.

In addition, by looking at patients with a range of disease severity, from mild cognitive impairment through to established Alzheimer’s disease, we were able to disentangle the causes of tau accumulation from its consequences. We showed that increasing amounts of tau in Alzheimer’s disease caused the brain to become less connected overall, and the connections that remained became increasingly random.

Long-range connections

Finally, we contrasted the findings in Alzheimer’s disease to a rarer condition called progressive supranuclear palsy (PSP), which affects approximately three in every 100,000 people. This condition is also caused by tau, but it remains confined to the base of the brain. We demonstrated that in PSP the evidence did not support transneuronal spread. This might be because of the different structure of abnormal tau pathology in the two diseases. In Alzheimer’s disease, tau is present in “paired helical filaments”, while in PSP it is in “straight filaments”.

Damaged communications.
Shutterstock

We showed that as PSP progresses, direct long-range connections are preferentially damaged, meaning that information had to take a more indirect route across the brain. This might explain why, when asked a question, patients with PSP usually respond slowly but correctly.

The ConversationOverall, evidence of transneuronal spread in humans with Alzheimer’s disease provides proof of concept for exciting new treatment strategies to lock up tau pathology before it can cause significant damage.

Thomas E Cope, Academic Clinical Fellow, University of Cambridge

This article was originally published on The Conversation. Read the original article.

The onset of Alzheimer’s disease: the importance of family history

News Release
February 26, 2018 | QUEBEC – The onset of Alzheimer’s disease: the importance of family history

You’re about to turn 60, and you’re fretting. Your mother has had Alzheimer’s disease since the age of 65. At what age will the disease strike you? A Canadian study published in JAMA Neurology shows that the closer a person gets to the age at which their parent exhibited the first signs of Alzheimer’s, the more likely they are to have amyloid plaques, the cause of the cognitive decline associated with the disease, in their brain.

In this study involving a cohort of 101 individuals, researcher Sylvia Villeneuve (Douglas Mental Health University Institute; CIUSSS de l’Ouest-de-l’Île-de-Montréal) shows that the difference between a person’s age and the age of their parent at the onset of the disease is a more important risk factor than their actual age.

A 60-year-old whose mother developed Alzheimer’s at age 63 would be more likely to have amyloid plaques in their brain than a 70-year-old whose mother developed the disease at age 85,” explains Villeneuve, an assistant professor at McGill University and a core faculty member at The Neuro’s McConnell Brain Imaging Centre.

Her team of scientists also found that the genetic impact of Alzheimer’s disease is much greater than previously thought.

“Upon examining changes in the amyloid biomarker in the cerebrospinal fluid samples from our subjects, we noticed that this link between parental age and amyloid deposits is stronger in women than in men. The link is also stronger in carriers of the ApoE4 gene, the so-called ‘Alzheimer’s gene’,” says Villeneuve.

Towards earlier detection of the disease

The researcher and her team successfully duplicated their results in two independent groups, one, consisting of 128 individuals from a University of Washington-St. Louis cohort, the other consisting of 135 individuals from a University of Wisconsin-Madison cohort. They also reproduced their results using an imaging technique that enables one to see amyloid plaques directly in the brains of living persons.

Their study is paving the way for the development of inexpensive methods for the early identification of people at risk for Alzheimer’s disease. According to the Alzheimer Society of Canada, 564,000 Canadians currently have Alzheimer’s disease or another form of dementia. The figure will be 937,000 within 15 years. Presently, there is no truly effective treatment for this disease.

This research was funded by grants from a Canadian research chair, the Canadian Institutes of Health Research, the Canadian Foundation for Innovation, the Canadian Brain Research Fund, the Alzheimer Society of Canada, and the Fonds de recherche du Québec — Santé.

The article entitled “Proximity to parental symptom onset and amyloid burden in sporadic Alzheimer’s disease” was published in JAMA Neurology on February 26, 2018. DOI:10.1001/jamaneurol.2017.5135

Source: http://www.douglas.qc.ca/?locale=en

Just the two of us: Holding hands can ease pain, sync brainwaves

News Release
Februarypexels-photo-325884.jpeg 28, 2018 | COLORADO – Just the two of us: Holding hands can ease pain, sync brainwaves

Reach for the hand of a loved one in pain and not only will your breathing and heart rate synchronize with theirs, your brain wave patterns will couple up too, according to a new study.

The study, by researchers with CU Boulder and University of Haifa and published in the journal Proceedings of the National Academy of Sciences (PNAS) this week, also found that the more empathy a comforting partner feels for a partner in pain, the more their brainwaves fall into sync. And the more those brain waves sync, the more the pain goes away.

Key takeaways
  • Holding the hand of a loved one in pain can synchronize breathing, heart rate and brain wave patterns.
  • The more empathy a comforting partner feels for a partner in pain, the more their brainwaves fall into sync.
  • Increased brain synchronization is associated with less pain.

“We have developed a lot of ways to communicate in the modern world and we have fewer physical interactions,” said lead author Pavel Goldstein, a postdoctoral pain researcher in the Cognitive and Affective Neuroscience Lab at CU Boulder. “This paper illustrates the power and importance of human touch.”

The study is the latest in a growing body of research exploring a phenomenon known as “interpersonal synchronization,” in which people physiologically mirror the people they are with. It is the first to look at brain wave synchronization in the context of pain, and offers new insight into the role brain-to-brain coupling may play in touch-induced analgesia, or healing touch.

Goldstein came up with the experiment after, during the delivery of his daughter, he discovered that when he held his wife’s hand, it eased her pain.

“I wanted to test it out in the lab: Can one really decrease pain with touch, and if so, how?”

He and his colleagues at University of Haifa recruited 22 heterosexual couples, age 23 to 32 who had been together for at least one year and put them through several two-minute scenarios as electroencephalography (EEG) caps measured their brainwave activity. The scenarios included sitting together not touching; sitting together holding hands; and sitting in separate rooms. Then they repeated the scenarios as the woman was subjected to mild heat pain on her arm.

Merely being in each other’s presence, with or without touch, was associated with some brain wave synchronicity in the alpha mu band, a wavelength associated with focused attention. If they held hands while she was in pain, the coupling increased the most.

Researchers also found that when she was in pain and he couldn’t touch her, the coupling of their brain waves diminished. This matched the findings from a previously published paper from the same experiment which found that heart rate and respiratory synchronization disappeared when the male study participant couldn’t hold her hand to ease her pain.

“It appears that pain totally interrupts this interpersonal synchronization between couples and touch brings it back,” says Goldstein.

Subsequent tests of the male partner’s level of empathy revealed that the more empathetic he was to her pain the more their brain activity synced. The more synchronized their brains, the more her pain subsided.

How exactly could coupling of brain activity with an empathetic partner kill pain? More studies are needed to find out, stressed Goldstein. But he and his co-authors offer a few possible explanations. Empathetic touch can make a person feel understood, which in turn – according to previous studies – could activate pain-killing reward mechanisms in the brain.

“Interpersonal touch may blur the borders between self and other,” the researchers wrote.

The study did not explore whether the same effect would occur with same-sex couples, or what happens in other kinds of relationships. The takeaway for now, Pavel said: Don’t underestimate the power of a hand-hold.

“You may express empathy for a partner’s pain, but without touch it may not be fully communicated,” he said.

Irit Weissman-Fogel, of University of Haifa, and Guillaume Dumas and Simone Shamay-Tsoory, of Florida Atlantic University, contributed to this study. It was supported with a grant from the Binational Science Foundation.

Source: https://www.colorado.edu/today/2018/02/28/just-two-us-holding-hands-can-ease-pain-sync-brainwaves?utm_source=colorado.edu&utm_medium=Hold%20hands%20to%20ease%20a%20lover%27s%20pain%2C%20and%20your%20brains%20couple%20up%2C%20too&utm_campaign=Homepage&utm_

Written by Lisa Ann Marshall.

Love & Dementia

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Dementia can take away memories but it cannot take away my love. Love is a feeling that will live on in my heart and soul.

Jo Sun

 

Bilingualism could offset brain changes in Alzheimer’s

A Concordia study sheds light on how language history relates to brain plasticity

News Release
February 6, 2018 | QUEBEC – Bilingualism could offset brain changes in Alzheimer’s

After more than a decade of research, this much we know: it’s good for your brain to know another language.

A new Concordia study goes further, however, focusing specifically on the effects of knowing a second language for patients with Alzheimer’s disease (AD) and mild cognitive impairment (MCI; a risk state for AD).

“Most of the previous research on brain structure was conducted with healthy younger or older adults,” says Natalie Phillips, a professor in the Department of Psychology.

“Our new study contributes to the hypothesis that having two languages exercises specific brain regions and can increase cortical thickness and grey matter density. And it extends these findings by demonstrating that these structural differences can be seen in the brains of multilingual AD and MCI patients.”

Phillips’s study, led by recent Concordia psychology grad Hilary D. Duncan (PhD 17), is soon to be published in Neuropsychologia(Jan, 2018).

New methods: Enter the MRI

Phillips and her team are the first to use high-resolution, whole-brain MRI data and sophisticated analysis techniques to measure cortical thickness and tissue density within specific brain areas.

Namely, they investigated language and cognition control areas in the frontal regions of the brain, and medial temporal lobe structures that are important for memory and are brain areas known to atrophy in MCI and AD patients.

“Previous studies used CT scans, which are a much less sensitive measure,” says Phillips, founding director of Concordia’s Cognition, Aging and Psychophysiology (CAP) Lab.

The study looked at MRIs from participating patients from the Jewish General Hospital Memory Clinic in Montreal.

Their sample included 34 monolingual MCI patients, 34 multilingual MCI patients, 13 monolingual AD patients and 13 multilingual AD patients.

Phillips believes their study is the first to assess the structure of MCI and AD patients’ language and cognition control regions. It is also the first to demonstrate an association between those regions of the brain and memory function in these groups, and the first to control for immigration status in these groups.

“Our results contribute to research that indicates that speaking more than one language is one of a number of lifestyle factors that contributes to cognitive reserve,” Phillips says.

“They support the notion that multilingualism and its associated cognitive and sociocultural benefits are associated with brain plasticity.”

What’s next?

Phillips and her team are already building on their findings.

“Our study seems to suggest that multilingual people are able to compensate for AD-related tissue loss by accessing alternative networks or other brain regions for memory processing. We’re actively investigating that hypothesis now.”

Read the cited study, “Structural brain differences between monolingual and multilingual patients with mild cognitive impairment and Alzheimer disease: Evidence for cognitive reserve.

Source: NEW RESEARCH: Bilingualism could offset brain changes in Alzheimer’s

Memory Garden in a Belfast Care Home

This care home has opened a ‘magical memory garden’, designed to rekindle the memories of those with dementia (SBS Australia).

“Pop Drop” Study finds more ER visits & higher costs for older disabled patients with stressed caregivers

News release

“Pop Drop” Study finds more ER visits & higher costs for older disabled patients with stressed caregivers

Fatigue, sadness and poor health among the spouses who take care of disabled elders can mean higher Medicare bills for the patients.

Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.

It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.

In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.

The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.

Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.

Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.

The cost of unpaid help

“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”

“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M. “Our findings suggest that we need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.”

Long-term data gives key insights

The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.

The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.

Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.

Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.

More research & services needed

Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.

Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.

“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”

Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.

Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.

Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.

One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.

Featured IHPI Members

Claire
Ankuda

M.D., M.P.H.

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Deborah
Levine

M.D., M.P.H.

Building a better world: can architecture shape behaviour?

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US architect Frank Lloyd Wright, who designed Fallingwater, believed that appropriate architecture would save the US from corruption.
Via Tsuji

Jan Golembiewski, University of Sydney

In 1966, a British planner called Maurice Broady came up with a new term for the architectural lexicon: architectural determinism.

This was to describe the practice of groundlessly asserting that design solutions would change behaviour in a predictable and positive way.

It was a new phrase but the belief system behind it – that buildings shape behaviour – had allowed the heroes of architecture to make all kinds of outlandish claims.

A hopeful history

Leon Battista Alberti, an Italian Renaissance-era architect, claimed in the 1400s that balanced classical forms would compel aggressive invaders to put down their arms and become civilians.

Frank Lloyd Wright, the US architect who designed one of the most famous buildings in America, Fallingwater, similarly believed appropriate architecture would save the US from corruption and turn people back to wholesome endeavours.

British author and thinker Ebenezer Howard believed companies would be more efficient if their employees lived in village-like garden communities.

Swiss-born French architect Le Corbusier made claims about how his Villa Savoye building in France would heal the sick – and when it did just the opposite, he only avoided court because of the commencement of the second world war.

It took a long list of failures over the millennia before postmodern theorists took to critiquing architectural fantasy with malevolent vengeance. The high-point of this trend was the delight shared over the demolition of the famously dangerous and dysfunctional Pruitt-Igoe urban housing complex in St Louis in the US.

It was designed by architects George Hellmuth, Minoru Yamasaki and Joseph Leinweber to provide “community gathering spaces and safe, enclosed play yards.” By the 1960s, however, it was seen as a hotspot for crime and poverty and demolished in the 1970s.

The demolition of Pruitt-Igoe in 1972 fuelled resistance to deterministic thinking.
Wikimedia

The loss of faith in architecture’s power has been regrettable. Architects’ well-meant fantasies once routinely provided clients with hope and sometimes even with results.

Without this promise, the profession was left inept before the better structural knowledge of engineers, the cumulative restrictions imposed by generations of planners, the calculations of project-managers and the expediency of a draughtsman’s CAD (computer-aided design) skills in turning a client’s every whim into reality.

Without fiction, architecture has become a soulless thing. But was determinism dismissed too soon? Is there a role for imagined futures without rationalist restrictions?

Restoring the faith

Just think of some of the ways architecture can manipulate your own experience. In his book, Happy City: Transforming Our Lives Through Urban Design, US author Charles Montgomery points out that some environments predictably affect our moods.

The fact is that environments do affect us, regardless of whether by design or by accident. In 2008, researchers in the UK found that a ten-minute walk down a South London main street increased psychotic symptoms significantly.

In my own research, I find that the healthier a person is, the more a good environment will affect them positively and the less a bad one will affect them negatively. Mentally ill patients show about 65 times more negative reactivity to bad environments than controls and all these reactions translate directly into symptoms.

The same patients have about half the positive responsiveness. That’s fewer smiles, less laughter and a reported drop in feeling the “fun of life”.

But that’s not all. The potential for architecture is richer still. The ease with which architecture can embrace sublime aesthetics makes it great for generating awe.

Psychiatrists have found that awe reduces the prevalence and severity of mood disorders. Could sublime architecture even potentially save lives?

The psychological effects of architecture are difficult to prove, but difficulty doesn’t dilute the value of a building that hits the right notes and creates a sense of awe. Each building type has different functions, and for each there’s an imperative to use the building to help create an optimal mood, desire or sense of coherence, security or meaning.

Awe reduces mood disorders: Gaudi’s Sacrada Familia church in Spain.
Wikimedia

Fortunately, there’s a resurgence of belief that buildings can change behaviour, led by a few architectural journals: World Health Design, Environment Behavior and HERD.

Most of these focus on health care design, because that’s where behavioural changes have life and death consequences.

But nobody dares make any promises. As such, research rarely opens the black box of environmental psychology, leaving findings unexplained and prone to failure.

To give architecture back its mojo, a new interest in how architecture changes us must be fostered. Clients have to learn to trust architects again and research funding bodies have to re-gear to encourage research into how buildings affect our mood, health and behaviours.

Finally, architecture schools have to teach students how they might predict psychological, emotional, healing and functional effects.

The ConversationAll innovation, ultimately, is led by the imagination – even if that means taking risks and sometimes getting it wrong.

Jan Golembiewski, Researcher in Environmental Determinants of Mental Health, University of Sydney

This article was originally published on The Conversation. Read the original article.

MIND Diet May Slow Cognitive Decline in Stroke Survivors 

Study results presented at the American Stroke Association International Conference

News Releases – Rush University Medical Center

January 25, 2018

A diet created by researchers at Rush University Medical Center may help substantially slow cognitive decline in stroke survivors, according to preliminary research presented on Jan. 25 at the American Stroke Association’s International Stroke Conference 2018 in Los Angeles. The findings are significant because stroke survivors are twice as likely to develop dementia compared to the general population.

The diet, known as the MIND diet, is short for Mediterranean-DASH Diet Intervention for Neurodegenerative Delay. The diet is a hybrid of the Mediterranean and DASH (Dietary Approaches to Stop Hypertension) diets. Both have been found to reduce the risk of cardiovascular conditions such as hypertensionheart attack and stroke.

“The foods that promote brain health, including vegetables, berries, fish and olive oil, are included in the MIND diet,” said Dr. Laurel J. Cherian, a vascular neurologist and assistant professor in Rush’s Department of Neurological Sciences. “We found that it has the potential to help slow cognitive decline in stroke survivors.”

Cherian is the lead author of the study, which was funded by the National Institute of Aging (grant numbers R01AG054476 and R01AG17917).

Study assessed survivors’ cognitive function, monitored their diets

Study co-author Martha Clare Morris, ScD, a Rush nutritional epidemiologist, and her colleagues developed the MIND diet based on information from years of research about what foods and nutrients have good, and bad, effects on the functioning of the brain. The diet has been associated with reduced Alzheimer’s risk in seniors who adhered to its recommendations. Even people who moderately adhered had reduced risk of AD and cognitive decline.

Rush is currently seeking volunteers to participate in the study, which aims to show whether a specific diet can prevent cognitive decline and brain changes with age. Those interested in participating in the study can call (708) 660-MIND (6463) or email mindstudychicago@rush.edu.

The MIND diet has 15 dietary components, including 10 “brain-healthy food groups” and five unhealthy groups — red meat, butter, cheese, pastries and sweets, and fried or fast food.

To adhere to and benefit from the MIND diet, a person would need to eat at least three servings of whole grains, a green leafy vegetable and one other vegetable every day — along with a glass of wine — snack most days on nuts, have beans every other day or so, eat poultry and berries at least twice a week and fish at least once a week. The diet also specifies limiting intake of the designated unhealthy foods, limiting butter to less than 1 1/2 teaspoons a day and eating less than five servings a week of sweets and pastries, and less than one serving per week of whole fat cheese, and fried or fast food.

“I was really intrigued by the results of a previous MIND study, which showed that the people who were most highly adherent to the MIND diet cognitively functioned as if they were 7.5 years younger than the least adherent group,” Cherian said. “It made me wonder if those findings would hold true for stroke survivors, who are twice as likely to develop dementia compared to the general population.”

From 2004 to 2017, Cherian and colleagues studied 106 participants of the Rush Memory and Aging Project who had a history of stroke for cognitive decline, including decline in one’s ability to think, reason and remember. They assessed people in the study every year until their deaths or the study’s conclusion, for an average of 5.9 years, and monitored patients’ eating habits using food journals.

The researchers grouped participants into those who were highly adherent to the MIND diet, moderately adherent and least adherent. They also looked at additional factors that are known to affect cognitive performance, including age, gender, education level, participation in cognitively stimulating activities, physical activity, smoking and genetics.

Related diets not associated with slower cognitive decline

The study participants whose diets scored highest on the MIND diet score had substantially slower rate of cognitive decline than those who scored lowest. The estimated effect of the diet remained strong even after taking into account participants’ level of education and participation in cognitive and physical activities. In contrast to the results of slower decline with higher MIND diet score, stroke survivors who scored high on the Mediterranean and DASH diets, did not have significant slowing in their cognitive abilities.

“The Mediterranean and DASH diets have been shown to be protective against coronary artery disease and stroke, but it seems the nutrients emphasized in the MIND diet may be better suited to overall brain health and preserving cognition,” Cherian said.

According to Cherian, studies have found that folate, vitamin E, omega-3 fatty acids, carotenoids and flavonoids are associated with slower rates of cognitive decline, while substances such as saturated and hydrogenated fats have been associated with dementia.

The right foods may protect stroke survivors’ cognition

“I like to think of the MIND diet as a way to supercharge the nutritional content of what we eat. The goal is to emphasize foods that will not only lower our risk of heart attacks and stroke, but make our brains as resilient as possible to cognitive decline,” she said.

“Our study suggests that if we choose the right foods, we may be able to protect stroke survivors from cognitive decline.” Cherian cautions, however, that the study was observational, with a relatively small number of participants, and its findings cannot be interpreted in a cause-and-effect relationship.

“This is a preliminary study that will hopefully be confirmed by other studies, including a randomized diet intervention study instroke survivors,” she says. “For now, I think there is enough information to encourage stroke patients to view food as an important tool to optimize their brain health.”

Source: MIND Diet May Slow Cognitive Decline in Stroke Survivors – News Releases – Rush University Medical Center

If you develop Alzheimer’s, will your children get it too?

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Rebecca Sims, Cardiff University

The most common question I get asked is “Will my child get Alzheimer’s disease?” In my experience, this concern is one of the biggest worries for sufferers, and given the devastating effects of the disease, it is not hard to see why it is a difficult thought to contemplate.

For those people with a familial form of Alzheimer’s disease, the answer is quite straightforward. This type of disease is caused by one or more mutation(s) in one of three genes: the amyloid precursor protein (APP), Presenilin 1 (PSEN1) and Presenilin 2 (PSEN2). All of these genes are involved in the production of the amyloid protein. This protein accumulates to form sticky buildups known as plaques, which are found between the cells of the Alzheimer brain and are characteristic of disease.

Those of us who are concerned that they may be at risk from familial Alzheimer’s disease can get a definitive answer through one of the many genetic tests available. A single copy of the mutated gene inherited from an affected parent will ultimately cause disease, with symptoms likely to be noticed before the age of 65 and typically between 30 and 60 years of age. Anyone concerned that they may suffer from this form of Alzheimer’s should seek a referral to a genetic counsellor.

Fortunately, families with a familial form of disease represent less than 1% of all families afflicted by this debilitating disease. For the remaining Alzheimer’s disease families, the answer as to the inheritance of disease is much less clear, and disease onset is certainly not inevitable.

Influencing disease

A combination of both genetic and environmental factors, such as age and gender, contribute to non-familial (also known as sporadic) disease risk, but how these risk factors interact and how many risk factors are required to cause disease is still unknown.

The genetics of non-familial Alzheimer’s is complex: we know that nearly thirty genes, common in the general population, influence disease risk, with potentially hundreds more involved. Additionally, two genes of low frequency have consistently been identified, with an imminent publication by the International Genomics of Alzheimer’s Project, showing another two rare genes have a relatively large effect on disease risk.

Perhaps most excitingly for researchers, genetics scientists have shown that four biological processes in Alzheimer’s disease – that were not previously thought to play a casual role in disease onset – are actually involved. The first process is the immune response, in particular the actions of immune cells and how these potentially dysfunction, attacking the brain, which results in brain cell death.

The second is the transport of molecules into the cell, suggesting that there is a mechanism for the movement of damaging proteins into the brain. The third process that has a role in the onset of Alzheimer’s is the synthesis and breakdown of fatty molecules. And the fourth is the processing of proteins that alters protein breakdown, movement, activity and interactions – all of which are essential for normal protein function.

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Lifestyle risk

Age is the greatest risk factor for disease, with the likelihood of developing Alzheimer’s roughly doubling every five years over the age of 65. Women also have more chance of developing the disease than men, potentially due to a reduction in female hormones after menopause.

Medical conditions that increase risk for dementia include cardiovascular factors (type 2 diabetes, high blood pressure, cholesterol levels, and obesity), and depression. While lifestyle factors such as physical inactivity, a diet that increases cholesterol, smoking and excessive alcohol intake, have all been shown to influence disease risk.

Even for those with a high number of genetic, environmental and lifestyle risk factors, Alzheimer’s disease is not inevitable. Likewise, individuals with a low number of risk factors for disease are not precluded from developing Alzheimer’s.

Given this lack of certainty and the lack of effective treatments for Alzheimer’s, most experts don’t recommend genetic testing for non-familial disease. This thinking may well evolve in the future, however, when research identifies new risk genes and improves our understanding of the dysfunctional processes in Alzheimer’s disease.

The Conversation

Answering the burning question, whether you will pass Alzheimer’s disease on to your children, is therefore still a near impossibility. But, as early diagnostic techniques improve, and with the prospect of a number of vaccines and therapeutics currently in clinical trials, risk prediction for Alzheimer’s disease may become mainstream and part of a developing precision medicine culture.

Rebecca Sims, Research Fellow, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University

This article was originally published on The Conversation. Read the original article.

Older Adults Are Still Likely Underestimating Cognitive Impairment in Their Families

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News release

 Study Finds Racial Differences in Reporting and Overall Trend of Underreporting Cognitive Impairment

An increasing number of older adults are reporting cognitive impairment in their families over the past two decades, according to a new study led by researchers at NYU Rory Meyers College of Nursing and East Carolina University’s Brody School of Medicine.

The study, which also finds ethnic and racial differences in reporting cognitive impairment, is published in Preventing Chronic Disease, a journal of the Centers for Disease Control and Prevention.

The aging population in the U.S. is growing rapidly, with the number of people age 65 and over in 2010 (40.2 million) projected to more than double by 2050. With the rapid increase in the aging population, the size of the population with cognitive impairment and dementia will continue to accelerate, highlighting the importance of identifying cognitive changes.

“Cognitive impairment may serve as a precursor to future dementia. Early detection of cognitive impairment can facilitate timely medical treatments, appropriate care planning, and prevention efforts,” said Bei Wu, PhD, Dean’s Professor in Global Health and director of Global Health & Aging Research at NYU Meyers, co-director of NYU Aging Incubator, and the study’s senior author.

The study sought to examine the trends of self-reported cognitive impairment among five major racial/ethnic groups from 1997 to 2015 in the United States. The researchers used data from the National Health Interview Survey, including 155,682 individuals age 60 and above in their sample. The large sample included people of a variety of races and ethnicities, including Asian Americans,  Blacks, Hispanics, Native Americans, non-Hispanic Blacks, and non-Hispanic Whites.

Rather than using a screening test or clinical examination to evaluate cognitive impairment, respondents were asked to report if any family member was “limited in anyway because of difficulty remembering or because of experiencing periods of confusion.”

The researchers found an increasing trend in self-reported cognitive impairment: the overall rate increased from 5.7 percent in 1997 to 6.7 percent in 2015 among older adults in the U.S. This finding may suggest that awareness of cognitive impairment, perhaps from heightened public attention to and interest in Alzheimer’s disease, has improved to some extent.

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When looking at each racial/ethnic group, however, the increasing trend was significant only among White respondents. In Whites, the rate of self-reported cognitive impairment increased from 5.2 percent in 1997 to 6.1 percent in 2015. Asian American, Black, Hispanic, and Native American respondents had higher rates of self-reported cognitive impairment than Whites, but these rates did not significantly increase from 1997 to 2015.

Regardless of the overall increasing trend, the rates of self-reported cognitive impairment were still low, which may suggest underreporting. The researchers note that the rates of self-reported cognitive impairment are much lower than the estimated prevalence of cognitive impairment. For adults 65 years and older, the rate of self-reported cognitive impairment was 6.3 percent in 2000 and 7.5 percent in 2012, while the estimated prevalence of cognitive impairment in the same age group was 21.2 percent in 2000 and 18.8 percent in 2012.

These findings underscore the need to further promote awareness of cognitive impairment, especially in minority populations. Different cultures hold different beliefs and perceptions of disease and aging. For instance, research has found that compared to Whites, minorities are less likely to seek treatment for psychiatric symptoms because of lack of access to care or due to stigma.

“Culturally specific health education is needed in individuals, family members, and healthcare providers to improve awareness and knowledge of signs and early symptoms of Alzheimer’s and other dementia,” said Huabin Luo, PhD, of East Carolina University.

In addition to Wu and Luo, Gary Yu of NYU Meyers coauthored the study.

Why a drug treatment for dementia has eluded us

 

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Have our hopes of a drug treatment for dementia been dashed by drug company Pfizer giving up on research efforts?
from http://www.shutterstock.com

Jürgen Götz, The University of Queensland

Finding a cure for neurodegenerative diseases such as Alzheimer’s is challenging. They’re difficult to diagnose, and drugs struggle to get into the brain as the brain’s blood supply is largely separate to the rest of the body. Not surprisingly, several companies have left this territory in recent years. This week, pharmaceutical giant Pfizer announced it will stop research into developing drugs to treat Alzheimer’s disease, after costly failed attempts over the past decade.

In recent years some clinical trials involving potential dementia drugs have had disappointing setbacks. In 2012, Pfizer and Johnson & Johnson halted development of the antibody drug bapineuzumab, after it failed in late-stage trials to treat patients with mild to moderate Alzheimer’s.

Despite this week’s announcement, Pfizer’s support of the UK’s Dementia Discovery Fund, an initiative involving the government, major pharmaceutical companies, and Alzheimer’s Research UK, may be where their money can make the most impact in this space. The fund aims to boost dementia research investment by financing early-stage drug development projects. And other pharma companies, such as Eli Lilly, Biogen and Novartis have continued to pursue dementia drug development with modest but promising success to date.

So what makes dementia such a difficult condition to treat with drugs, and is progress being made towards a treatment?


Read more: Alzheimer’s breakthrough? Have we nearly cured dementia? Not just yet…


Why dementia is so hard to treat

Despite the vast number of people affected globally, with an estimated 46.8 million people currently living with dementia, there is currently no cure. While current treatments manage symptoms (the latest drug to gain FDA approval was memantine, in 2003) they offer no prospect of recovery.

Part of the difficulty in finding treatments for dementia stems from the fact it’s not a single disease, but a complex health problem with more than 50 underlying causes. Dementia can be better thought of as an umbrella term describing a range of conditions that cause parts of the brain to deteriorate progressively.


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


Most drug treatments currently in development have targeted the pathology of Alzheimer’s disease, the most common form of dementia, which accounts for about 60 to 70% of all cases.

Finding a successful treatment for Alzheimer’s faces two major hurdles: the first being we still don’t know enough about the disease’s underlying biology. For example, we don’t know what exactly regulates the toxic build-up of amyloid-β plaques and tau tangles in the brain that are found in Alzheimer’s patients, which specific types of these are toxic, or why the disease progresses at different rates in different people.

It doesn’t help that symptoms of Alzheimer’s develop gradually and slowly and a diagnosis might only be made years after the brain has started to undergo neurodegenerative changes. To boot, it’s not uncommon for Alzheimer’s to be present as well as other forms of dementia.

The second major hurdle to finding a treatment is that drugs need to first cross the blood-brain barrier. The blood–brain barrier provides a defence against disease-causing pathogens and toxins that may be present in our blood, and by design exists to keep out foreign substances from the brain. The downside is that it also keeps the vast majority of potential drug treatments from reaching the brain.


Read more – Explainer: what is the blood-brain barrier and how can we overcome it?


The brain has a blood barrier that protects it from pathogens that invade the rest of our body, which also means drugs can’t get in there.
from http://www.shutterstock.com

Promising steps in the right direction

Currently available medications such as those which block the actions of an enzyme that destroys an important chemical messenger in the brain for memory (acetylcholinesterase inhibitors) or blocks the toxic effects of another messenger, glutamate (memantine) temporarily manage symptoms. But new treatments are focused on slowing or reversing the disease process itself, by targeting the underlying biology.

One approach, called immunotherapy, involves creating antibodies that bind to abnormal developments in the brain (such as amyloid-β or tau), and mark them for destruction by a range of mechanisms. Immunotherapy is experiencing a surge of interest and a number of clinical trials – targeting both amyloid-β and tau – are currently underway.

Aducanumab, an antibody targeting amyloid-β, has shown promise in clinical trials and phase 3 trials are currently ongoing, as are several tau-based strategies. If any are successful, we would have a vaccine for Alzheimer’s.


Read more – How Australians Die: cause #3 – dementia (Alzheimer’s)


It’s estimated only 0.1% of antibodies circulating in the bloodstream enter the brain – this also includes the therapeutic antibodies currently used in clinical trials. An approach my team is taking is to use ultrasound to temporarily open the blood-brain barrier, which increases the uptake of Alzheimer’s drugs or antibody fragments.

We’ve had success in mice, finding ultrasound can clear toxic tau protein clumps, and that combining ultrasound with an antibody fragment treatment is more effective than either treatment alone in removing tau and reducing Alzheimer’s symptoms. The next challenge will be translating this success into human clinical trials.

The task of dementia drug development is no easy feat, and requires collaboration across government, industry and academia. In Australia, the National Dementia Network serves this purpose well. It’s only through perseverance and continued investment in research that we’ll one day have a treatment for dementia.


The ConversationWith thanks to Queensland Brain Institute Science Writer Donna Lu.

Jürgen Götz, Director, Clem Jones Centre for Ageing Dementia Research, The University of Queensland

This article was originally published on The Conversation. Read the original article.

How the brain selectively remembers new places

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Neuroscientists identify a circuit that helps the brain record memories of new locations.

MIT News release – Source: How the brain selectively remembers new places

When you enter a room, your brain is bombarded with sensory information. If the room is a place you know well, most of this information is already stored in long-term memory. However, if the room is unfamiliar to you, your brain creates a new memory of it almost immediately.

MIT neuroscientists have now discovered how this occurs. A small region of the brainstem, known as the locus coeruleus, is activated in response to novel sensory stimuli, and this activity triggers the release of a flood of dopamine into a certain region of the hippocampus to store a memory of the new location.

“We have the remarkable ability to memorize some specific features of an experience in an entirely new environment, and such ability is crucial for our adaptation to the constantly changing world,” says Susumu Tonegawa, the Picower Professor of Biology and Neuroscience and director of the RIKEN-MIT Center for Neural Circuit Genetics at the Picower Institute for Learning and Memory.

“This study opens an exciting avenue of research into the circuit mechanism by which behaviorally relevant stimuli are specifically encoded into long-term memory, ensuring that important stimuli are stored preferentially over incidental ones,” adds Tonegawa, the senior author of the study.

Akiko Wagatsuma, a former MIT research scientist, is the lead author of the study, which appears in the Proceedings of the National Academy of Sciences the week of Dec. 25.

New places

In a study published about 15 years ago, Tonegawa’s lab found that a part of the hippocampus called the CA3 is responsible for forming memories of novel environments. They hypothesized that the CA3 receives a signal from another part of the brain when a novel place is encountered, stimulating memory formation.

They believed this signal to be carried by chemicals known as neuromodulators, which influence neuronal activity. The CA3 receives neuromodulators from both the locus coeruleus (LC) and a region called the ventral tegmental area (VTA), which is a key part of the brain’s reward circuitry. The researchers decided to focus on the LC because it has been shown to project to the CA3 extensively and to respond to novelty, among many other functions.

The LC responds to an array of sensory input, including visual information as well as sound and odor, then sends information on to other brain areas, including the CA3. To uncover the role of LC-CA3 communication, the researchers genetically engineered mice so that they could block the neuronal activity between those regions by shining light on neurons that form the connection.

To test the mice’s ability to form new memories, the researchers placed the mice in a large open space that they had never seen before. The next day, they placed them in the same space again. Mice whose LC-CA3 connections were not disrupted spent much less time exploring the space on the second day, because the environment was already familiar to them. However, when the researchers interfered with the LC-CA3 connection during the first exposure to the space, the mice explored the area on the second day just as much as they had on the first. This suggests that they were unable to form a memory of the new environment.

The LC appears to exert this effect by releasing the neuromodulator dopamine into the CA3 region, which was surprising because the LC is known to be a major source of norepinephrine to the hippocampus. The researchers believe that this influx of dopamine helps to boost CA3’s ability to strengthen synapses and form a memory of the new location.

They found that this mechanism was not required for other types of memory, such as memories of fearful events, but appears to be specific to memory of new environments. The connections between the LC and CA3 are necessary for long-term spatial memories to form in CA3.

“The selectivity of successful memory formation has long been a puzzle,” says Richard Morris, a professor of neuroscience at the University of Edinburgh, who was not involved in the research. “This study goes a long way toward identifying the brain mechanisms of this process. Activity in the pathway between the locus coeruleus and CA3 occurs most strongly during novelty, and it seems that activity fixes the representations of everyday experience, helping to register and retain what’s been happening and where we’ve been.”

Choosing to remember

This mechanism likely evolved as a way to help animals survive, allowing them to remember new environments without wasting brainpower on recording places that are already familiar, the researchers say.

“When we are exposed to sensory information, we unconsciously choose what to memorize. For an animal’s survival, certain things are necessary to be remembered, and other things, familiar things, probably can be forgotten,” Wagatsuma says.

Still unknown is how the LC recognizes that an environment is new. The researchers hypothesize that some part of the brain is able to compare new environments with stored memories or with expectations of the environment, but more studies are needed to explore how this might happen.

“That’s the next big question,” Tonegawa says. “Hopefully new technology will help to resolve that.”

The research was funded by the RIKEN Brain Science Institute, the Howard Hughes Medical Institute, and the JPB Foundation.

Dementia: number of people affected to triple in next 30 years

WHO News release – Source: Dementia: number of people affected to triple in next 30 years 

News release

 As the global population ages, the number of people living with dementia is expected to triple from 50 million to 152 million by 2050.

“Nearly 10 million people develop dementia each year, 6 million of them in low- and middle-income countries,” says Dr Tedros Adhanom Ghebreyesus, Director-General of WHO. “The suffering that results is enormous. This is an alarm call: we must pay greater attention to this growing challenge and ensure that all people living with dementia, wherever they live, get the care that they need.”

The estimated annual global cost of dementia is US$ 818 billion, equivalent to more than 1% of global gross domestic product. The total cost includes direct medical costs, social care and informal care (loss of income of carers). By 2030, the cost is expected to have more than doubled, to US$ 2 trillion, a cost that could undermine social and economic development and overwhelm health and social services, including long-term care systems.

First global monitoring system launched

The Global Dementia Observatory, a web-based platform launched by WHO today, will track progress on the provision of services for people with dementia and for those who care for them, both within countries and globally. It will monitor the presence of national policy and plans, risk reduction measures and infrastructure for providing care and treatment. Information on surveillance systems and disease burden data is also included.

“This is the first global monitoring system for dementia that includes such a comprehensive range of data,” said Dr Tarun Dua, of WHO’s Department of Mental Health and Substance Abuse. “The system will not only enable us to track progress, but just as importantly, to identify areas where future efforts are most needed.”

Encouraging results in planning for dementia and support for carers

To date, WHO has collected data from 21 countries (1) of all income levels. By the end of 2018, it is expected that 50 countries will be contributing data.

Initial results indicate that a high proportion of countries submitting data are already taking action in areas such as planning, dementia awareness and dementia-friendliness (such as facilitating participation in community activities and tackling the stigmatization of people living with dementia) and provision of support and training for carers, who are very often family members.

Of the countries reporting data so far:

  • 81% have carried out a dementia awareness or risk reduction campaign
  • 71% have a plan for dementia
  • 71% provide support and training for carers
  • 66% have a dementia-friendly initiative.

All of these activities are recommended by WHO in the Global action plan on the public health response to dementia 2017-2025. The Plan provides a comprehensive blueprint for action, in areas including: dementia awareness and dementia-friendliness; reducing the risk of dementia; diagnosis, treatment and care; research and innovation; and support for dementia carers. It suggests concrete actions that can be taken by policy-makers, health- and social-care providers, civil society organizations and people with dementia and their careers. The Plan has been developed with attention to the importance of respecting the human rights of people with dementia and engaging them in planning for their care. Targets against which progress can be measured are included.

Diagnosis and research require significant effort

Just 14% of countries reporting data could indicate the number of people being diagnosed with dementia. Previous studies suggest that as many as 90% of people with dementia in low- and middle-income countries are unaware of their status.

The data also highlight the need for rapid scale-up of research. There have been some encouraging signs in funding available for investment in research for a cure for dementia in recent years, but much more needs to be done. The number of articles in peer-reviewed journals on dementia in 2016 was close to 7000. This compares with more than 15 000 for diabetes, and more than 99 000 for cancer during the same year. Research is needed not only to find a cure for dementia, but also in the areas of prevention, risk reduction, diagnosis, treatment and care.

The Observatory will provide a knowledge bank where health and social care authorities, medical professionals, researchers and civil society organizations will be able to find country and regional dementia profiles, global reports, policy guidance, guidelines and toolkits on dementia prevention and care.

Dementia

Dementia is an umbrella term for several diseases that are mostly progressive, affecting memory, other cognitive abilities and behaviour and interfering significantly with a person’s ability to maintain the activities of daily living. Women are more often affected than men. Alzheimer’s disease is the most common type of dementia and accounts for 60–70% of cases. The other common types are vascular dementia and mixed forms.

Editor’s note

WHO’s work on the Global Dementia Observatory is supported by the governments of Canada, Germany, Japan, the Netherlands, Switzerland and the United Kingdom of Great Britain and Northern Ireland and the European Commission.

For more information, please contact:

Alison Brunier
Communications Officer
World Health Organization
Tel: +41 22 791 4468
Mobile: +41 79 701 9480
E-mail: bruniera@who.int

Fadela Chaib
Communications Officer
World Health Organization
Tel: +41 22 791 3228
Mobile: +41 79 475 5556
E-mail: chaibf@who.int


(1) Australia, Bangladesh, Chile, Costa Rica, Dominican Republic, Fiji, France, Hungary, Italy, Japan, Jordan, Maldives, Mauritius, Myanmar, Netherlands, Qatar, Swaziland, Sweden, Switzerland, Togo, Tunisia

 

Architecture And Design Help the Brain to Recover

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How does the hospital environment affect our rehabilitation? New research from the University of Gothenburg, Sweden, into how the space around us affects the brain reveals that well-planned architecture, design and sensory stimulation increase patients’ ability to recover both physically and mentally. Digital textiles and multisensory spaces can make rehabilitation more effective and reduce the amount of time spent in care.

In an interdisciplinary research project, Kristina Sahlqvist has used research into the recovery of the brain to examine how hospitals can create better environments for rehabilitation.

“We want to help patients to get involved in their rehabilitation, a side effect of which can be an improvement in self-confidence,” says Sahlqvist, interior architect and researcher at the University of Gothenburg’s School of Design and Crafts (HDK).

The project drew on all the expertise used on a ward, with input from neurologists, rehabilitation doctors, nurses, psychologists, occupational therapists and physiotherapists. The result is a conceptual solution for an optimal rehabilitation ward.

“Our concept gives the ward a spatial heart, for example, where patients and their families can prepare food and eat together, which allows for a more normal way of spending time together in a hospital environment,” says Sahlqvist.

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In tandem with her research work, she has teamed up with a designer and researcher at the Swedish School of Textiles in Borås on an artistic development project where they redesigned furniture, developed easy-grip cups and cutlery and used smart textiles, in other words textiles with technology embedded in them. The concept includes a table and chairs, a rug and a muff with integral heating, a cardigan with speakers and a soft bracelet that is also a remote control.

In order to measure and test the research theories Sahlgrenska University Hospital will be developing an intensive care room featuring multimodal stimulation, where all the senses are affected. The work involves an architect, doctors, hospital staff, musicians, a designer, an acoustician and a cognition specialist. In a bid to see what kind of results the environment can produce in practice, the researchers will take account of the entire social situation of patients, family and staff.

There are other interesting tricks in the field of neuroarchitecture, where it is possible, for example, to use spatial expressions to improve learning. Although these are currently used predominantly in schools, they could also have potential for the elderly.

“It’s worth wondering why there are so many educational models for preschool children but so few for the elderly. Many old people need a far more stimulating environment than they have at the moment,” says Sahlqvist.

Date: November 3, 2011
Source: University of Gothenburg
Release from University of Gothenburg

建筑和设计帮助大脑恢复

发布日期:2011年11月2日。
哥德堡大学发布 

转到移动页面。

医院环境如何影响我们的康复? 瑞典哥德堡大学的最新研究发现,我们周围的空间如何影响大脑,显示出精心策划的建筑,设计和感官刺激可以提高患者身心恢复的能力。 数字纺织品和多感官空间可以使康复更有效,并减少花费在护理上的时间。

在一个跨学科研究项目中,Kristina Sahlqvist利用大脑恢复研究来研究医院如何创造更好的康复环境。

哥德堡大学设计与工艺学院(HDK)室内设计师兼研究员Sahlqvist说:“我们希望帮助患者参与康复治疗,其副作用可以提高自信心。

该项目利用了病房的所有专业知识,由神经科医生,康复医生,护士,心理学家,职业治疗师和物理治疗师提供投入。 结果是最佳康复病房的概念性解决方案。

Sahlqvist说:“我们的理念给病房提供了一个空间的心脏,例如,病人和他们的家人可以一起准备食物和一起吃饭,这样可以在医院环境中更加正常地花时间在一起。

在她的研究工作的同时,她与布罗斯的瑞典纺织学院的一位设计师和研究员合作开展了一个艺术发展项目,重新设计了家具,开发了易握杯子和餐具,并使用了智能纺织品,换句话说纺织品其中嵌入了技术。 这个概念包括一张桌子和椅子,一个地毯和一个带有整体加热装置的手套,一个带扬声器的开襟衫和一个也是遥控器的软手镯。

为了衡量和测试研究理论,萨尔格林斯卡大学医院将开发一个以多模式刺激为特征的重症监护室,所有感官都受到影响。 这项工作涉及建筑师,医生,医院工作人员,音乐家,设计师,声学家和认知专家。 为了研究环境在实践中能产生怎样的结果,研究人员将考虑患者,家属和工作人员的整个社会状况。

在神经体系结构领域还有其他一些有趣的技巧,例如使用空间表达来改善学习。 虽然这些目前主要用于学校,但也可能对老年人有潜力。

Sahlqvist表示:“值得一提的是,为什么学龄前儿童的教育模式如此之多,而老年人的教育模式却很少。许多老年人需要的环境比现在更为刺激。

Alarming amounts of noise demand ways to silence noisy hospital environments

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Spending a night in the hospital is not only stressful, but also loud. The constant beeps, whirrs and alarms ascend to a cacophony that produces anything but a relaxing, restful environment. Researchers will summarize the limited number of studies available on hospital noise and discuss the different approaches health care facilities are taking to bring restful repose to patients across the country during the 174th ASA Meeting, Dec. 4-8, 2017, in New Orleans, La.

Source: Alarming amounts of noise demand ways to silence noisy hospital environments

Hospital noise is a growing concern for patients, family and staff, but many facilities are looking for new approaches to reduce the din and bring peace back to their environment.

Public Release: ACOUSTICAL SOCIETY OF AMERICA

WASHINGTON, D.C. December 6, 2017– Spending a night in the hospital is not only stressful, but also loud. The constant beeps, whirrs and alarms ascend to a cacophony that produces anything but a relaxing, restful environment. Ilene Busch-Vishniac, of BeoGrin Consulting in Baltimore, Maryland, will summarize the limited number of studies available on hospital noise and discuss the different approaches health care facilities are taking to bring restful repose to patients across the country.

According to the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, noise is the top complaint of patients, staff and visitors. “Nearly everyone has a stay in a hospital at some point,” Busch-Vishniac said. “Noise is a universal problem in hospitals around the world.”

Busch-Vishniac will explore these concepts during the 174th Meeting of the Acoustical Society of America, being held Dec. 4-8, 2017, in New Orleans, Louisiana. Noises emanate from a variety of sources at the bedside. Airflow and the noisy machines controlling it are kept on high to prevent pathogens from lingering near patients, and overhead pages alert staff of needs or announcements. Equipment alarms are the most egregious source, and although they are designed to alert staff of changes in the patient’s medical condition, many also sound when medication needs to be changed or when battery conditions are low.

“Alarms in hospitals are being horribly abused,” Busch-Vishniac said. “Most of the time, they don’t in fact indicate urgent situations.”

Previous studies showed that alarms at a patient’s bedside sound an average 133 times per day. With so many alarms, staff often face alarm fatigue as well.

“Most alarms are being responded to eventually, but not all in a timely fashion,” said Busch-Vishniac. “Staff also may not respond quickly because they recognize that the sound is not critical and the situation will right itself.”

Besides the obvious barrier to rest, high noise levels have been associated with changes in the patient’s heart rate, respiration and blood pressure. These changes increase stress levels and may impair healing. The noise can also impair communication between patients and staff.

With noise levels on the rise, the Centers for Medicare and Medicaid Services (CMS) initiated the HCAHPS survey in 2008 to assess consumer perception of health care providers and systems. Today, more than 5,500 hospitals contribute to the report, which consists of patients’ responses on seven composite measures, including questions focused on room cleanliness and quietness.

The survey has teeth. Hospital value-based purchasing links up to 30 percent of CMS payments to hospitals across the country to the results of the survey.

“Faced with a loss of money, many hospitals are looking for ways to address noise levels in a way that patients can see as an improvement,” said Busch-Vishniac.

Hospitals have been developing and implementing noise control programs that can be broken into two categories: engineering and administrative interventions.

Engineering interventions aim to find ways to quiet the room. The solutions can be as simple as closing the door to a patient’s room or as complex as installing acoustical absorption materials along the walls and ceiling to dampen the noise level. Administrative interventions focus on changing behaviors. Many hospitals have instituted quiet hours when doors are closed and voices are kept low.

One of the big changes during the past 10 years has shifted alarms from solely sounding at the patient’s bedside to also alerting a central monitor at the nursing station. This approach improves the ability of staff to identify and respond to alarms set at a reduced volume.

According to Busch-Vishniac, it may be possible in the future to remove alarms from the bedside. A quiet hospital may not be a pipedream for much longer.

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Presentation 3pIDa: “Hospital noise: how bad is it?” by Ilene Busch-Vishniac is at 1:45-2:05 p.m. CST, Wednesday, Dec. 6, 2017, in Salon E in the New Orleans Marriott. https://asa2017fall.abstractcentral.com/s/u/M8hKSrQu66E

Green for wellbeing – science tells us how to design urban spaces that heal us

 

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Generic plotting of ‘green space’ on an urban plan does not target mental wellbeing unless it is designed to engage us with the sights, sounds and smells of nature.
Zoe Myers, Author provided

Zoe Myers, University of Western Australia

One in five Australians will suffer from a mental health issue this year and living in a city makes it far more likely. Research shows that city dwellers have a 20% higher chance of suffering anxiety and an almost 40% greater likelihood of developing depression.

Promisingly, however, research has also found that people in urban areas who live closest to the greatest “green space” are significantly less likely to suffer poor mental health.

Urban designers thus have a significant role to play in lowering these rates of mental illness, and the data on how nature affects our brains are central to changing the ways we design. As depression is the world’s biggest cause of disability, we cannot afford to ignore the impact of public environments on mental health.

Multiple stressors associated with city living have been shown to increase activity in the parts of the brain corresponding to the “flight or fight” response.


Further reading: Vanishing Australian backyards leave us vulnerable to the stresses of city life


How does exposure to nature reduce these stresses? There are two enduring theories on how nature affects the brain. Both are based on nature having a restorative effect on cognitive and emotional function.

Hyde Park, Perth, allows for an immersive ‘escape’ from the urban world.
Zoe Myers, Author provided

It is not emptiness or quiet, however, that has the effect. Nature in its messy, wild, loud, diverse, animal-inhabited glory has the most impact on restoring a stressed mind to a calm and alert state. This provides a more complete sense of “escape” from the urban world, however brief.

This idea is not new, nor is it surprising. Many people seek out nature to restore wellbeing, and multiple disciplines have sought to measure these restorative effects.

The result is more than 40 years of research quantifying specific neurological, cognitive, emotional and physiological effects of “nature” elements. These effects include increased calm and rumination, decreased agitation and aggression, and increased cognitive functioning – such as concentration, memory and creative thought.


Further reading: Biophilic urbanism: how rooftop gardening soothes souls


A neglected resource for urban design

This wealth of data has been largely overlooked in driving good urban design.

Much of this can be attributed to the data being siloed into scientific disciplines separate from design. All use different languages and are often hidden behind academic journal paywalls.

Also significant is the complexity of mental health issues. This makes it difficult to draw conclusions on environmental effects. To use this data required first a meta-analysis of these methodologies and outcomes, and my own interpretation of how the data applied specifically to urban design.

There are some notable conclusions.

This pedestrian and bike path in Perth is unlikely to maximise the benefits of green space.
Zoe Myers, Author provided
  1. Different natural elements can induce different benefits. This means generic design plotting of “green space” on an urban plan, however aesthetically pleasing, does not specifically target mental wellbeing.
  2. Time plays a significant role. There is no point having great green spaces if these do not provide good reason or opportunity to linger long enough to experience the restorative benefits.
  3. How you engage with your environment matters. Results differ depending on whether the user is observing, listening, or exercising in the space. Taking these variables into account can produce a vast combination of design scenarios.

For example, despite the many studies on the restorative effects of forests, these are not the most accessible option for most city-dwellers. Urban parks are an alternative, but creative, natural interventions in urban spaces that encourage incidental interaction with green space can also produce much benefit.

Much has been written about how walking or exercising in green spaces seems to amplify the effects on the brain of viewing nature. Indeed, as little as five minutes of “green exercise” can produce these benefits.


Further reading: Higher-density cities need greening to stay healthy and liveable


What’s wrong with existing green spaces?

Many urban parks and green spaces – particularly in residential areas – are unimaginative, repetitive and lack basic elements to evoke these references to nature. Nor do they encourage walking or enjoying the natural elements for any length of time.

A typical reserve in Perth, Australia.
Zoe Myers, Author provided
A residential footpath and verge in Perth, Australia.
Zoe Myers, Author provided

For example, paths without shade or protection do not encourage walks long enough to achieve benefits. A lack of landscape diversity does little to activate fascination or interest, and fails to offer incentive to visit them, especially given the ways in which parks can be separated from their surroundings.

In an attempt to create spaces to serve function, such as ensuring enough turf for a game of football, much biodiversity has been removed, thus also removing the sights, sounds and smells needed for an immersive, multi-sensory experience. This applies equally to many suburban footpaths and residential streets.

A suburban residential street in Perth, Australia.
Zoe Myers, Author provided

When urban design gets it right

Septuagesimo Uno Pocket Park, Manhattan.
‘Jim Henderson, Atlas Obscura’

Compare this to urban areas that employ creative uses of incidental nature to capture attention and offer genuine interaction.

Successful parks and urban green spaces encourage us to linger, to rest, to walk for longer. That, in turn, provides the time to maximise restorative mental benefits.

Urban design’s role in shaping our cities is becoming less about the design of physical spaces and more about extracting principles that can be applied to urban spaces in ways specifically tailored to context, site, region and climate.

This means urban design can have a real impact on mental wellbeing, but we need to look outside our discipline for data to make it effective.

A Tokyo road reserve.
from Tokyo DIY Gardening

The ConversationFurther reading: Greening cities makes for safer neighbourhoods

Zoe Myers, Research Associate, Australian Urban Design Research Centre, University of Western Australia

This article was originally published on The Conversation. Read the original article.

Stressed and exhausted caregivers need better support

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Up to 80 per cent of community care for older adults is provided by unpaid informal caregivers. In the absence of government supports, many of them struggle with exhaustion, stress and depression.
(Shutterstock)

Jenny Ploeg, McMaster University and Maureen Markle-Reid, McMaster University

When Brenda retired from paid work, it was like a care-giving tsunami.

Her dad and stepmom moved in with her, her husband had a heart attack and she became a grandma — all within six months.

Brenda is one of 8.1 million Canadians who have taken on challenging unpaid roles — as informal caregivers for people living with physical or cognitive conditions or chronic life-limiting illnesses.

Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.

She looked on the internet for support in her care-giving role.

As co-scientific directors of the Aging, Community and Health Research Unit at McMaster University, we are working together with older adults with multiple conditions and caregivers like Brenda to promote optimal aging at home.

Our research shows that current health and social services do not address the complex needs of older adults or their family caregivers.

It also suggests that web-based interventions may help reduce depressive symptoms, anxiety and stress or distress for these caregivers.

Who cares for the caregivers?

Older adults with chronic conditions rely heavily on their family caregivers to coordinate their care, monitor medication and accompany them to appointments.

In fact, 70 to 80 per cent of community care for older adults is provided by informal caregivers as opposed to formal care providers.

Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.

Women represent a slight majority of Canadian caregivers at 54 per cent and spend more time per week on caregiving than males.

Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.
(Shutterstock)

While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.

Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.

“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.

Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.

Web-based supports can help

We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.

One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.

We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.

Internet-based interventions reduce caregiver depression and anxiety.
(Shutterstock)

The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.

However, although many websites for caregivers provide valuable information, we found that they need to be easier to navigate and use.

Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.

Nova Scotia leads the way

Caregiving comes with costs to the caregivers — to their health and to their finances.

Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.

Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.

And yet caregivers make vitally important but often unrecognized contributions to our society. It is estimated that they contribute $25 billion in unpaid labour.

Change is urgently needed to better support our caregivers.The Conversation

Jenny Ploeg, Professor, School of Nursing, McMaster University and Maureen Markle-Reid, Associate Professor and Canada Research Chair in Person Centred Interventions for Older Adults with Multimorbidity and their Caregivers, School of Nursing, McMaster University

This article was originally published on The Conversation. Read the original article.