Category Archives: Dementia Prevention: International Campaigns

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.

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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.

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/

How poetry influences illness and health

News Release
May 1, 2018 | Chicago – How poetry influences illness and health

by Marla Paul

How can poetry influence our experience of illness? How can the lyric form disrupt and reshape our understanding of illness and health care?

These and other provocative questions at the intersection of poetry and medicine will be discussed at the ninth Annual Hippocrates Poetry and Medicine Symposium on Thursday and Friday, May 10 and 11.

This is the first time the international conference will be held in Chicago. It is co-sponsored by Northwestern University’s Center for Bioethics and Medical Humanities, the Hippocrates Initiative for Poetry and Medicine, the Poetry Foundation and Harvard Medical School.

“Poetry can have a powerful influence on how we experience and understand illness,” said symposium organizer Dr. Kelly Michelson, director of the Center for Bioethics and Medical Humanities at Northwestern University Feinberg School of Medicine. “Very creative people are integrating poetry into clinical care, but we need a broader conversation to understand what that looks like and what its impact could be for patients, families and health care providers.”

The symposium will kick off at 7 p.m. Thursday, May 10, with a reading by poet Mark Doty at the Poetry Foundation, 61 W. Superior St., Chicago.

The conference’s academic program begins at 8:15 a.m. Friday morning, May 11, at the Feinberg School of Medicine at the Robert H. Lurie Research Center in the Baldwin auditorium, 303 E. Superior St., on the Chicago campus.

Panels of the day will explore how poetry can influence the illness experience; how a body’s physiology and a poem’s language speak to each other; how poetry frames the witnessing of cultural differences and disparities; and how lyric form can disrupt and reconstitute our understanding and teaching of illness and health care. The day will also feature a keynote conversation between poet Mark Doty and physician-poet Rafael Campo and a lunchtime poster session.

At 4 p.m., the award ceremony and reading of winning entries of the Hippocrates Prize for Poetry and Medicine will be held at the Poetry Foundation.

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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

“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.

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Claire
Ankuda

M.D., M.P.H.

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Deborah
Levine

M.D., M.P.H.

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.