Dementia more preventable in Asia and Latin America

News Release
April 2019 | University College London, Gower Street, London – Dementia more preventable in Asia and Latin America

Close to one in two cases of dementia could be preventable in low- to middle-income countries, finds a new UCL study.

Dancing in Peru
The findings, published in The Lancet Global Health, found how improving childhood education and other health outcomes throughout life could reduce the risk of dementia.

“After our previous research finding that one in three cases of dementia could be preventable, we realised that the evidence was skewed towards higher-income countries,” said the study’s lead author, Dr Naaheed Mukadam (UCL Psychiatry).

“We have now found that in low- to middle-income countries in Asia and Latin America, dementia may be even more preventable than it is in more wealthy countries. If life-course risk factors such as low levels of education in early life and hearing loss, obesity and low physical activity in mid-life to old age are addressed, these countries could see large improvements in their dementia rates.”

While the number of people with dementia is increasing globally, particularly in low- to middle-income countries, there have been modest reductions in age-specific dementia rates in many high-income countries over the last two decades.* The researchers say this could be due to improvements in health outcomes throughout life that affect dementia risk.

The research team built on their previous work for the Lancet Commission on dementia prevention, intervention, and care, published in 2017, which found that 35% of dementia is attributable to nine risk factors: low levels of childhood education, hearing loss, smoking, hypertension, obesity, physical inactivity, social isolation, depression, and diabetes.*

To understand whether the commission’s findings would apply equally to global regions that were underrepresented in the report, a team of UCL researchers sought out data from China, India and Latin America. They drew from the research collective 10/66 Dementia Research Group’s data, which used similar methodology to gauge prevalence of the nine risk factors in those countries, with sample sizes of 1,000 to 3,000 in each country.

The researchers found even more potential for preventing dementia across the globe, as the proportion of dementia linked to the nine modifiable risk factors was 40% in China, 41% in India and 56% in Latin America.

A major factor in that difference is the lower levels of educational attainment in low- to middle-income countries, which the researchers say signals hope for the future, as education levels rise.

“People growing up in Asia and Latin America today are more likely to have completed schooling than their parents and grandparents were, meaning they should be less at risk of dementia later in life than people who are already over 65. Continuing to improve access to education could reap great benefits for dementia rates in years to come,” Dr Mukadam said.

On the other hand, social isolation is a major risk factor of dementia in higher income countries, but much less so in China and Latin America. The researchers say that public health officials in countries such as the UK could learn from China and Latin America in efforts to build more connected communities to buffer against the dementia risk tied to social isolation.

Obesity and hearing loss in mid-life, and physical activity in later life, were also strongly linked to dementia risk in the study area, as well as mid-life hypertension in China and Latin America and smoking in later-life in India.

“Reducing the prevalence of all of these risk factors clearly has numerous health benefits, so here we’ve identified an added incentive to support public health interventions that could also reduce dementia rates. The growing global health burden of dementia is an urgent priority, so anything that could reduce dementia risk could have immense social and economic benefit,” Dr Mukadam said.

Senior author Professor Gill Livingston (UCL Psychiatry) added: “A lot of the findings of health and medical research derive primarily from higher income countries such as in Western Europe and North America, so ensuring that research is inclusive is vital to the development of global public health strategies.”

“While we don’t expect these risk factors to be eliminated entirely, even modest improvements could have immense impact on dementia rates. Delaying the onset of dementia by just five years would halve its prevalence*,” she said.

The researchers are supported by the National Institute for Health Research UCLH Biomedical Research Centre, Wellcome, NIHR, Economic and Social Research Council, and NIHR Collaboration for Leadership in Applied Health Research and Care North Thames.

Links
Research paper in The Lancet Global Health
Dr Naaheed Mukadam’s academic profile
UCL Psychiatry
* The Lancet Commission on dementia, prevention, intervention and care
Image
People dancing in Peru. Credit: Alex Proimos, Source: Flickr
Media contact
Chris Lane
tel: +44 20 7679 9222

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

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FACTCHECK: Does eating two teaspoons of nuts really boost your brain function by 60%?

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New Africa/Shutterstock

Sandra-Ilona Sunram-Lea, Lancaster University

Dementia is a cruel disease that robs people of their memory, their judgement and their identity. Unfortunately, there is no cure, and in the past few years a number of clinical trials for new dementia drugs have failed – the latest being Biogen’s drug aducanumab. Without any effective treatments on the horizon, most people’s best hope is to avoid getting dementia in the first place.

One of the hallmarks of dementia is cognitive decline. There are several lifestyle changes that may slow cognitive decline, such as doing mentally stimulating activities (crossword puzzles, learning a new language), getting plenty of exercise and maintaining a healthy diet – especially one low in saturated fats, refined carbohydrates and sugar.

Of these, diet is a favourite among health reporters, perhaps because the message can be delivered clearly and succinctly. The latest such story comes from the Daily Mirror which claims that eating just two teaspoons of nuts a day “boosts brain function by 60%”. If the claim is true, we should all be rushing out to buy a bag of nuts, but is this what the study actually says?

The article is based on an observational study published in the Journal of Nutrition Health and Aging. After assessing the diets of nearly 5,000 adults in China (aged 55 and older) over a period of nine years, the researchers found an inverse relationship between the amount of nuts people ate and the degree of cognitive decline they experienced. Those who consumed more than 10g of nuts and seeds a day were less likely to show a fall in their cognitive function compared with those who consumed less than 10g a day.

Out of the 4,822 participants in the study, 67% had their cognitive ability tested twice (only 16% were tested more than twice over the course of the study). Where more than one cognitive measurement was made, cognitive performance decreased over time, but people who ate more than 10g of nuts per day decreased the likelihood of this decline. Consequently, the results suggest that consuming two teaspoons of nuts per day may preserve cognitive performance and may lead to better cognitive ageing over a lifetime. The results do not show that eating nuts improves cognitive function, as the Mirror headline claimed.

A certain amount of cognitive decline is inevitable with age.
Andrea Danti/Shutterstock

Limitations

Participants in the study inevitably varied on a number of factors, including education, general health, nutritional intake and lifestyle factors, such as exercise. Although the way the data was analysed took those factors into account and still found an association, cognitive decline and dementia are strongly influenced by many environmental and genetic factors, and it is unlikely that consumption of one particular food is sufficient to ward off dementia.

Another weakness of this study is the fact that participants reported their nut consumption via a questionnaire. Evidence shows that self-reported food consumption should always be interpreted with caution.

Although randomised controlled trials indicate that eating nuts has an effect on blood flow (including to the brain), there isn’t enough evidence to draw conclusions about their impact on cognitive function.

What we can say at this point is that the evidence on nuts and cognitive decline is promising, but it isn’t strong enough to make nutritional recommendations. Simply consuming two teaspoons of nuts per day is unlikely to reduce your risk of dementia.


More on evidence-based articles about diets:

Sandra-Ilona Sunram-Lea, Senior Lecturer in Psychology, Lancaster University

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

Empathy, a key ingredient in culture change

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Better Way to Predict the Progression of Alzheimer’s Disease

News Release
April 2019 | the Society of Nuclear Medicine and Molecular Imaging – New PET Imaging Biomarker Could Better Predict Progression of Alzheimer’s Disease

Reston, VA—Researchers have discovered a way to better predict progression of Alzheimer’s disease. By imaging microglial activation levels with positron emission tomography (PET), researchers were able to better predict progression of the disease than with beta-amyloid PET imaging, according to a study published in the April issue of The Journal of Nuclear Medicine.

According to the Alzheimer’s Association, an estimated 5.3 million Americans are currently living with Alzheimer’s disease. By 2025, that number is expected to increase to more than seven million. The hallmark brain changes for those with Alzheimer’s disease include the accumulation of beta-amyloid plaques. When microglial cells from the central nervous system recognize the presence of beta-amyloid plaques, they produce an inflammatory reaction in the brain.

“The 18-kD translocator protein (TSPO) is highly expressed in activated microglia, which makes it a valuable biomarker to assess inflammation in the brain,” said Matthias Brendel, MD, MHBA, at Ludwig-Maximilians-University of Munich in Germany. “In our study, we utilized TSPO-PET imaging to determine whether microglial activation had any influence on cognitive outcomes in an amyloid mouse model.”

Figure 2Longitudinal TSPO and Aβ PET and performance in behavioral testing. (A) Cortical TSPO PET and Aβ PET signal intensities of PS2APP mice at different ages are expressed as z scores relative to findings in age-matched C57BL/6 mice. Coronal and axial slices are projected on T1-weighted MRI template. (B) Progression of individual TSPO PET z scores and Aβ PET z scores in forebrain of PS2APP mice (n = 10) with age. (C) Differences between PS2APP and C57BL/6 (WT) mice for escape latency (sec) and traveled distance in pixels (pix) as WM readouts. Error bars represent SEM. *P < 0.01. **P < 0.001.

In the study, researchers compiled a series of PET images for 10 transgenic mice with beta-amyloid proteins and seven wild-type mice. TSPO PET imaging of activated microglia was conducted at eight, 9.5, 11.5 and 13 months, and beta-amyloid PET imaging was performed at eight and 13 months. Upon completion of the imaging, researchers then subjected the mice to a water maze in which the mice were to distinguish between a floating platform that would hold their weight and one that would sink. The tasks were performed several times a day during a 1.5-week period. Memory performance in the water maze was assessed by measuring the average travel time from the start point to a platform each day of training and by calculating the traveled distance at the last day of training. After completing the water maze task, immunohistochemistry analyses were performed for microglia, amyloid and synaptic density.

Transgenic mice with the highest TSPO PET signal in the forebrain or other areas associated with spatial learning tended to have better cognitive performance in the water maze, while beta-amyloid signals in the same areas of the brain showed no correlation to cognitive outcomes in the maze. Researchers found that an earlier microglial response to amyloid pathology in transgenic mice also protected synaptic density at follow-up. Specifically, transgenic mice with higher TSPO expression at eight months had much better cognitive outcomes in the water maze and higher synaptic density as confirmed by immunochemistry analyses.

“This study provides the first evidence that the level of microglial activation could be a far better predictor of current and future cognitive performance than beta-amyloid levels,” noted Brendel. “Keeping the limitations of mouse models in mind, it could be crucial to modify an individual’s microglial activation state to ameliorate future cognitive decline. We believe that a balanced microglia activation is crucial for prevention of cognitive impairment.”

The authors of “Early and Longitudinal Microglial Activation but Not Amyloid Accumulation Predicts Cognitive Outcome in PS2APP Mice” include Carola Focke, Maximilian Deussing, Claudio Schmidt, Simon Lindner, Franz-Josef Gildehaus, Leonie Beyer and Barbara von Ungern-Sternberg, Department of Nuclear Medicine, University Hospital of Munich, LMU Munich, Munich, Germany; Tanja Blume, Department of Nuclear Medicine, University Hospital of Munich, LMU Munich, Munich, Germany, and Center for Neuropathology and Prion Research, Ludwig-Maximilians-University of Munich, Munich, Germany; Benedikt Zott and Helmuth Adelsberger, Institute of Neuroscience, Technical  University of Munich, Munich, Germany; Yuan Shi and Mario M. Dorostkar, Center for Neuropathology and Prion Research, Ludwig-Miximilians-University of Munich, Munich, Germany, and DZNE-German Center for Neurodegenerative Diseases, Munich, Germany; Finn Peters, DZNE-German Center for Neurodegenerative Diseases, Munich, Germany; Gernot Kleinberger, Munich Cluster for Systems Neurology, University of Munich, Munich, Germany, and Biomedical Center, Biochemistry, Ludwig-Maximilians-University of Munich, Munich, Germany; Peter Bartenstein and Matthias Brendel, Department of Nuclear Medicine, University Hospital of Munich, LMU Munich, Munich, Germany, and Munich Cluster for Systems Neurology, University of Munich, Munich, Germany; Laurence Ozmen and Karlheinz Baumann, Roche Pharma Research and Early Development, F. Hoffman-La Roche Ltd., Basel, Switzerland; Christian Haass, DZNE-German Center for Neurodegenerative Diseases, Munich, Germany, Munich Cluster for Systems Neurology, University of Munich, Munich, Germany, and Biomedical Center, Biochemistry, Ludwig-Maximilians-University of Munich, Munich, Germany; Jochen Herms, Center for Neuropathology and Prion Research, Ludwig-Maximilians-University of Munich, Munich, Germany, DZNE-German Center for Neurodegenerative Diseases, Munich, Germany, and Munich Cluster for Systems Neurology, University of Munich, Munich, Germany; Axel Rominger, Department of Nuclear Medicine, University Hospital of Munich, LMU Munich, Munich, Germany, Munich Cluster for Systems Neurology, University of Munich, Munich, Germany, and Department of Nuclear Medicine, Inselspital, University Hospital Bern, Bern, Switzerland.

###


For more information or to schedule an interview with the researchers, please contact Rebecca Maxey at (703) 652-6772 or 
rmaxey@snmmi.org.  Current and past issues of The Journal of Nuclear Medicine can be found online at http://jnm.snmjournals.org.

About the Society of Nuclear Medicine and Molecular Imaging

The Society of Nuclear Medicine and Molecular Imaging (SNMMI) is an international scientific and medical organization dedicated to advancing nuclear medicine and molecular imaging, vital elements of precision medicine that allow diagnosis and treatment to be tailored to individual patients in order to achieve the best possible outcomes.

SNMMI’s more than 17,000 members set the standard for molecular imaging and nuclear medicine practice by creating guidelines, sharing information through journals and meetings, and leading advocacy on key issues that affect molecular imaging and therapy research and practice. For more information, visit www.snmmi.org.

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

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The earlier you start planning, the better.
Shutterstock

Alison Rahn, Western Sydney University

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

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

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




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


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

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

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

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

Relying on government-funded services is risky

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

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




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


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

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

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

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

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

Attitudes to residential aged care

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

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




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


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

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

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

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

Preparing for the end of your life

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

1. Adopt a healthy lifestyle

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




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


2. Consult a financial planner

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

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

3. Talk about your wishes

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

4. Write it down

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

End of life planning tools can help.
Trinity Treft

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

5. Choose carefully where you live

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

Support (and be supported by) your community

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

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

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

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




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


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

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

Personhood

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

TomKW2019.png

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

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

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

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

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

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

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




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


Consumer directed care

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


https://datawrapper.dwcdn.net/OE5jK/2/


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

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

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

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




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


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

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

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


The Conversation, CC BY-ND

People need clear information to choose a provider

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

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


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


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

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

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

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

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

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

Service and administrative fees

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

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

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

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




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


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

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

People need support to manage their packages

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

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

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

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

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

How can we improve things?

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

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

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




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


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

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

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

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

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