International Campaigns – Designing for Aged Care

Caregiving, International Campaigns, Research & Best Practice, The Built Environment

Nursing homes for all: why aged care needs to reflect multicultural Australia

Posted on October 10, 2019October 10, 2019 by Joanna Sun

Do nursing home staff know and respect your cultural background or language? Here’s why that’s important.
from www.shutterstock.com

Helen Rawson, Deakin University

This week, the aged care royal commission looks at diversity in aged care, an issue becoming increasingly relevant to both residents and the staff who care for them.

Diversity includes gender, sexual orientation, religion and social background. The issue is important because if we aim to offer older people and families choice and control in aged care, we must meet the diverse needs of all older people.

Australia’s rich diversity is reflected in its older population. In 2016, more than one-third (37%) of Australians aged 65 and over were born overseas and one-fifth (20%) were born in a non-English speaking country.

These figures have increased continually since 1981, when one-quarter (25%) of older people were born overseas.

Diversity within diversity: culture and language

Culture is important for every person. It indicates a way of life based on customs, beliefs, language and experiences shared with family and a wider community or group.

According to the Federation of Ethnic Communities’ Councils of Australia, many people from culturally and linguistically diverse backgrounds don’t want to move to a nursing home. This is for a number of reasons.

They may not want to be away from family and community, they might speak a different language to staff and other residents, and homes may not understand or meet their individual cultural needs.

Our previous research showed living in an aged care facility could make some older people feel disempowered. Language and cultural diversity can further add to that disempowerment. For the older people we studied, communication, companionship, and staff knowing them as individuals was very important.

Language is particularly important for older people’s physical health and well-being. Many culturally and linguistically diverse older people say they speak English well. However, with age and cognitive decline, they may lose the ability to communicate in English and revert to their first language.

And as more than half of nursing home residents have dementia, with the associated deterioration in language and cognition, communication can be more difficult still.

Appreciating someone’s cultural background can help residents make friends.
from www.shutterstock.com

Being aware of their peer’s culture and language can help residents build relationships with each other, family and staff.

Different cultural expectations and language barriers can create misunderstanding and resident and family dissatisfaction. This can affect residents’ care and quality of life.

How can we support appropriate care?

Aged care needs to be responsive, inclusive and sensitive to a person’s culture, language and spiritual needs. So it is important for nursing homes to understand those needs.

For those who are culturally diverse, government-funded support and culturally specific nursing homes can help. These include services for Greek, Italian, Dutch, Jewish and Chinese older people, reflecting post-war migration.

However, organisations like these cannot meet everyone’s needs. So all residents need care that respects cultural and social differences, works with older people and family, and supports choice.

What might appropriate care look like?

Staff need ongoing cultural competence training to deliver appropriate and supportive care.

Staff cannot know everything about the many cultural and language groups in Australia. They can, however, practise in way that is culturally appropriate, by:

never making assumptions about someone’s culture, heritage, language or individual needs. No two people are the same, even if they are from the same culture and language background
talking to the resident with an interpreter, if needed
learning what is important to the resident. For example, staff could ask family members or close friends to bring in photos or mementos important to the older person
talking with family of residents who are unable to communicate in English to make a list of key words or phrases for staff. This could include how to say “hello”, or how to ask “are you comfortable?”, or “are you in pain?”
making sure the older person isn’t isolated in the nursing home. This could involve working with the local community of the person’s culture, and asking for volunteers who could come and visit the older person.

Family members can be a huge help to staff in understanding the resident’s language, culture and preferences.
Nadya Chetah/Shutterstock

Appropriate and respectful aged care is a human right

Culture and language diversity in aged care is a fundamental human right. Embedding diversity in all aspects of aged care is also recognised by government, and in how the quality of aged care is assessed.

New aged care quality standards, which came into effect this July, include being treated with dignity and respect, with identity, culture and diversity valued, and all residents able to make informed choices about the care and services they receive.

If the outcomes of this royal commission are to benefit Australians now and especially in the future, older people from culturally and linguistically diverse backgrounds must not be an afterthought in the aged care discussion. They must be part of the planning.

Helen Rawson, Senior Research Fellow, Deakin University

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

Ageing & Culture, Caregiving, International Campaigns, International Policies, Research & Best Practice

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

Posted on September 27, 2019November 1, 2019 by Joanna Sun

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.

Caregiving, International Campaigns, International Policies, Research & Best Practice

Dementia more preventable in Asia and Latin America

Posted on April 22, 2019April 18, 2019 by Joanna Sun

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

Caregiving, International Campaigns, International Policies, The Built Environment

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

Posted on March 28, 2019November 1, 2019 by Joanna Sun

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.

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.

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.

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.

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.

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.

Caregiving, Dementia, Inspirational quotes & videos, International Campaigns, International Policies, Research & Best Practice, Therapeutic Activities

Personhood

Posted on March 21, 2019November 1, 2019 by Joanna Sun

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?

Caregiving, International Campaigns

International Women’s Day 2019

Posted on March 8, 2019March 8, 2019 by Joanna Sun

I hope in a decade when I look back on this post, the world will be a better place for people living with dementia, especially for women.

Jumping into the facts, a study evidently points out that in Singapore, 97% of caregivers for people living with dementia were female; comprising of daughters and daughter in law’s.

In the aged care sector, the workforce comprises of mostly women. In some countries up to 80%.

Our biological differences have seen more women then men living with dementia, and dementia being the leading cause of death for women.

For many of us women, we may be living with dementia, be the primary support for a loved one with dementia or working to formally provide care to a person living with dementia.

It’s important that we support each other and work together to educate the next generation, reducing traditional gender roles to enable more opportunities for a cure as more women move into STEM. Recognise the efforts and responsibilities of women taking on caring roles within the family, one that is of love, patience and pain as they live the long goodbye. Let’s not forget the many care staff in the aged care sector that have been working on minimum wage, understaffed and running off their feet, yet always having a warm smile and love for the people living with dementia that they care for.

Let’s do better for all women living and working with dementia!