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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Alzheimer’s Disease International

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

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

About World Alzheimer’s Month

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

About Alzheimer’s Disease International (ADI)

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

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Truly smart homes could help dementia patients live independently

PixOfPop/Shutterstock

Dorothy Monekosso, Leeds Beckett University

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

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

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

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

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

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

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

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

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

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

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

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

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

Understanding interaction

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

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

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

Dorothy Monekosso, Professor of Computer Science, Leeds Beckett University

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

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

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

File 20180921 129847 1di589.jpg?ixlib=rb 1.1

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

Ralph Hampson, University of Melbourne

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

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

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

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




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


Why is smaller better?

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

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

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

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

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

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

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




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


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

Bigger and less home-like

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

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




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


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

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

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

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

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

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

Empathy, a key ingredient in culture change

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The earlier you start planning, the better.
Shutterstock

Alison Rahn, Western Sydney University

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

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

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




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


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

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

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

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

Relying on government-funded services is risky

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

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




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


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

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

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

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

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

Attitudes to residential aged care

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

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




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


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

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

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

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

Preparing for the end of your life

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

1. Adopt a healthy lifestyle

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




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


2. Consult a financial planner

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

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

3. Talk about your wishes

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

4. Write it down

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

End of life planning tools can help.
Trinity Treft

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

5. Choose carefully where you live

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

Support (and be supported by) your community

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

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

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

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




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


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

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

Personhood

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

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