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

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

Ralph Hampson, University of Melbourne

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

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

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

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




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


Why is smaller better?

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

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

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

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

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

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

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




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


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

Bigger and less home-like

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

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




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


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

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

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

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

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.

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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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Stressed and exhausted caregivers need better support

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

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

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

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

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

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

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

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

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

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

Who cares for the caregivers?

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

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

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

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

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

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.
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While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.

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

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

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

Web-based supports can help

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

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

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

Internet-based interventions reduce caregiver depression and anxiety.
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The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.

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

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

Nova Scotia leads the way

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

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

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

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

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

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

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

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

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

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Most aged-care residents don’t feel like they are loved or belong in their facility.
from shutterstock.com

Lee-Fay Low, University of Sydney

All humans have fundamental needs. These are physiological (food, drink, clothing, sleep), safety (emotional security, physical safety, health), love and belonging (friendships, community), esteem (respect, dignity) and self-actualisation (accomplishment, personal development).

For people living in Australia’s residential aged-care facilities, these needs are often not met.

Most residents do not feel they are loved or belong in the facility. Like aged-care resident Neda Borenstein, whose secret camera footage broadcast on ABC’s Four Corners showed her singing the Australian national anthem in bed while she waited more than three hours to be changed. “I’m just a number,” Neda told her carer when she finally returned to help her up.

Less than one-third of residents we interviewed said they were friends with another resident. This means most don’t have the social support associated with friendships. Most residents said they felt socially isolated, which is associated with poor well-being.

A 2016 study of residents’ lived experiences in an aged-care facility found many felt they had little dignity, autonomy or control. Outside of meal and structured activity times, people with dementia spend most of their time stationary, alone and doing very little or nothing.

One study looking at interactions between residents and their carers showed residents were alone 40% of the time they were observed. When staff were present, they mostly did not engage verbally, emotionally or physically with the resident.

Aged-care facilities can also feel psychologically unsafe to residents.
Residents with dementia may be locked in secure units or physically restrained, using mechanisms such as bedrails or restraining belts.

Residents sometimes don’t get along. They might argue yell, swear, pinch, hit or push each other. We don’t have good data about how often resident-to-resident verbal and physical aggression happens, but it can result in injury and even death.




Read more:
Violence between residents in nursing homes can lead to death and demands our attention


The consequences of unmet needs?

Residents can react negatively when their needs are not met. They become bored, sad, stressed, cranky, anxious, depressed, agitated, angry and violent.

In people with dementia, we used to call these reactions “behavioural and psychological symptoms of dementia” (BPSD). But people with dementia have been pointing out these are normal human responses to neglect, not symptoms of dementia. Almost all (90%) aged-care residents display one or more of these negative reactions.

In many facilities, staff “manage” such reactions with the use of sedating antipsychotic medications. But clinical guidelines recommend looking at the reasons people may be reacting that way and addressing those before medication.




Read more:
Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients


Half of nursing home residents have symptoms of depression, and a third have symptoms of anxiety. More than half of residents have been found in studies to behave in ways that might suggest they no longer wish to live. This includes refusing food or medication, one-third of residents having suicidal thoughts and a small number of nursing home residents actually taking their own lives.




Read more:
Too many Australians living in nursing homes take their own lives


Why does Australian aged care fail to meet fundamental human needs?

We might not be spending enough on aged care to enable providers to meet fundamental human needs. Australia spends about 1% of its GDP on long-term care – less than the OECD average of 1.5%.

Private investment in aged care is growing, as have residential aged care profits, but it’s a difficult industry in which to make money. Insufficient funding translates to insufficient staff and less skilled staff. Our funding system rewards dependency, and there are no funding incentives for providers to improve the psychological well-being of residents, or go beyond that to help them flourish.

Friendships are an important part of healthy ageing.
from shutterstock.com

People looking for a nursing home don’t have any independently provided information by which to compare quality or performance.

The National Quality Indicator Program – a program for measuring care in residential aged-care facilities that began in 2016 – was meant to provide information for people trying to compare facilities on clinical indicators of care quality.

But participation in the program is voluntary for providers. Neither quality of life nor emotional well-being indicators are included in the suite of quality indicators (even though one has been trialled and found to be suitable). We also don’t know if or when the data might be published.

What is needed?

We need a fundamental shift in community, government, service provider, staff and regulatory expectations of what residential aged care does. Our model of aged care is mainly about clinical care, while neglecting emotional care.

For instance, friendships are a unique social interaction that facilitate healthy ageing, but many residents told us that the social opportunities in their nursing home did not align with their expectations of friendship.




Read more:
Loneliness is a health issue, and needs targeted solutions


We need our model of care to be a model of a home. In a home everyone contributes, has a say in what happens in the home (such as the menu, interior design, routine and functions), is able to invite their friends to their home for a meal, and can leave during the day and come back at night. A home is a safe place, where people are loved and nurtured, and where they can be active and fulfilled.The Conversation

Lee-Fay Low, Associate Professor in Ageing and Health, University of Sydney

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

A new project shows combining childcare and aged care has social and economic benefits

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Intergenerational care programs encourage relationship building between generations.
Griffith University

Anneke Fitzgerald, Griffith University; Katrina Radford, Griffith University, and Lalitha Kirsnan, Griffith University

What happens when you bring a group of older residents to mix with young children in childcare? Clapping hands and singing songs is just one way they spend the morning together. These interactions are made possible by intergenerational care programs that have gained popularity in Australia in recent years.

Intergenerational care programs provide older adults and children aged three to five with care and social support in the same setting, for short periods of time. This has mutual benefits.

The widespread implementation of intergenerational care programs has the potential to solve many of today’s economic challenges associated with child and aged care, while enhancing the educational and social benefits in encouraging relationship building between generations.

Intergenerational care programs in Australia

Although intergenerational care programs are popular in the US and UK, they’re in their infancy in Australia.

Intergenerational care gives older participants an improved sense of life purpose.
Griffith University

Given changing economic, demographic and social pressures in Australia, there’s an increased need for quality and cost-effective care arrangements for both older people and young children.

There’s an anticipated rise in demand for formal care services associated with an ageing population in Australia. This is further compounded by an increase in people not having children, shifts in perceptions of family obligations for caring, rising divorce rates and rising female employment rates.

Accompanying the unprecedented demand for formal aged care services is the limited supply of such care. Finding appropriate care for both older people and young children in Australia is often difficult and unsuitable for the person in need of care or their carer.

The increase in demand for formal care services and the shortage of supply of such care highlights the need for alternative models. This includes models such as intergenerational care. But current intergenerational programs in Australia tend to operate in residential aged care facilities, lack a formalised program based on educational teaching strategies, and don’t keep track of or evaluate participant outcomes.

The Griffith University Intergenerational Care Project

The Griffith University Intergenerational Care Project focuses on trialling two models of care:

  1. a shared campus model where an aged care centre is located in the same place as a childcare centre
  2. a visiting campus model where childcare and aged care centres are located separately and one group travels to visit the other.
Both younger and older participants in the Intergenerational Care Project have expressed excitement and joy at being able to interact with each other.
Griffith University

The psychological and social benefits of intergenerational care programs are well recognised. Griffith University’s Intergenerational Care Project is investigating the educational, workforce and economic benefits intergenerational care programs can bring to Australia.

This research is now well underway and is being conducted across four locations within Queensland and NSW. It’s conducted with older adults living with dementia and children aged three to five years.

In this program, older people and children meet for one hour each week over 16 weeks. They partake in shared activities designed to enhance engagement between generations.

Preliminary results suggest the reception of the program has been positive. Both younger and older participants expressed excitement and joy at being able to interact with each other.

Benefits of intergenerational care

Intergenerational care programs give children the opportunity to learn from and connect with an older generation, improve children’s behaviour and attitude towards older people, and enhance the overall well-being of both young and old participants.




Read more:
Combining daycare for children and elderly people benefits all generations


For older participants, intergenerational care programs allow them to pass on their knowledge and interact with young children in a meaningful way. As a result, they feel an improved sense of life meaning and enhanced self-worth.

Broader benefits

Community perceptions of older adults and ageing also tend to shift from negative to positive. This is especially important because older people want to be treated as valued members in society.
Intergenerational care programs enhance the quality of relationships between ageing people and children, and challenge ageist stereotypes.

Intergenerational care programs create a strong opportunity to address ageism in society from an early age and challenge people’s assumptions about the contributions of people living with dementia or experiencing other forms of cognitive decline.

This is particularly important in Australia. It’s projected by 2050 about one million people will be living with a dementia-related illness. This represents an increase of 254% since 2011.

There are also economic and wider social benefits of intergenerational care.
Griffith University

Delivering intergenerational programs in one location is also attractive because of anticipated cost savings. Both aged care and childcare organisations can decrease total running costs by sharing resources such as skilled labour, learning materials, and buildings.

Our preliminary workforce interview findings suggest intergenerational care is a career path that interests staff. It also suggests creating a training qualification to enable this career path may address workforce shortages in both child care and aged care.




Read more:
What happened when we introduced four-year-olds to an old people’s home


Intergenerational care programs offer an effective alternative model of care in Australia in the face of increasing economic, demographic and social pressures. An extensive rollout of such programs has the potential to give families access to more, higher quality childcare, and helps older people feel like valued members of society.

Anneke Fitzgerald, Professor, Griffith University; Katrina Radford, Lecturer, Deputy Director Research IBAS, Griffith University, and Lalitha Kirsnan, Marketing and Communications Officer, Intergenerational Care Project, Griffith University

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

Dementia, prevention & our children

There are 23 million people living with dementia in the Asia Pacific Region in 2015, costing the region a whopping US$185 billion. Little education exists on dementia for our children aside from countries such Australia, Japan, with some children attaining information in countries such as Korea, Singapore, Taiwan and China. However, there is nothing in the national curriculums to prepare children for Dementia or help children to fully understand  the need of dementia inclusive enabling communities or the preventative measures required for them to put in place at a young age to reduce their risk of dementia especially those brought about by lifestyle factors.

Ireland with slightly less than half the number of people living with dementia at approximately 20,000 people, and a population of 1.8 million and a land mass of 14,130 km2. Alzheimer’s Society reported that at least 30% of the young will know a person living with dementia. Last Wednesday it was announced on the Alzheimer’s Society website that Alzheimer’s Society and the Council for the Curriculum, Examinations and Assessment have included dementia in the school syllabus, making Northern Ireland the first to have a dementia friendly generation.

The resources are also available not just in English but also in the Irish language. Click here to view resources.

PRIMARY SCHOOL: The Archie Project from Reminiscence Learning has created a unique and innovative intergenerational awareness project to reduce the stigma associated with dementia. They believe that by engaging with young children they are dispelling the fear of dementia and changing the attitudes of our workforce for the future, providing education to support early diagnosis. Archie’s Story follows a scarecrow with dementia on his journey from exclusion to inclusion. The accompanying Archie workbook goes on to help children understand how Archie’s state of wellbeing improves by being understood, loved and included — a simple concept but one that both children and adults can relate to. The Archie Project provide books, workbooks, assemblies, scarecrow parades, Archie-related activities, training, drama and recognisable merchandise so that everyone can connect with the Archie character and learn how to engage with people with dementia in their families and communities. Links between schools and care homes enable children to put their new dementia awareness into practice. By increasing their knowledge of dementia, the project gives them confidence to interact with residents during visits to local care homes, where they take part in shared activities such as singing, gardening activities, coffee mornings, shared lunches, snooker, craft activities, tea dances and storytelling. Archie mascots encourage conversation and engagement with people at all stages of dementia. For more information visit www.reminiscencelearning.co.uk/archie (Source Alz Soc Youtube)

The promotion of dementia awareness not only helps us to create a better multi-generational dementia inclusive society but for our children, it will help them better understand the need for education and the impacts of negative lifestyle choices. A study based on a Comparison of the Prevalence of Dementia in the United States in 2000 and 2012 published in JAMA internal Medicine on the 21st November indicated that education appears to be a protector against dementia. Dr Kenneth Langa theorises that education “actually creates more, and more complicated, connections between the nerve cells so that you’re able to keep thinking normally later into life.”

In addition, Director of the Division of Behavioral and Social Research in the National Institute on Aging, John Haaga adds that “Education can not only change the brain, it can change your whole life… It affects what kind of work you do, of course. It also affects who your friends are, who you’re married to, whether you’re married. All aspects of life are affected by educational attainment.”

When children learn about dementia and the brain, they will also learn about the risk factors which will help them to adhere to healthier lifestyle choices. According to Dr Alina Cohen, “factors such as adhering to a healthy lifestyle including a diet that is rich in essential nutrients, regular exercise engagement, and having an adequate cardiovascular profile all seem to be effective ways by which to preserve cognitive function and delay cognitive decline.” This study by York University presented evidence that the delay of dementia is connected with healthy living which in turn aids higher brain function. On a whole, our children will understand the importance of education, strategies to building cognitive resilience and understand the need for a healthy lifestyle for a healthy brain. There are a whole lot more pros than cons in this picture and policy makers should really sit up and start using their brains to look at how this can be implemented. Students will be able to understand the effects of stress on the brain, the importance of prevention and help-seeking behaviours especially in the areas of anxiety and depression. On a systemic level, this will create not only a friendlier, integrated and healthier multi-generational society but one that in the future may potentially see a reduction in healthcare spending as a result of unhealthy lifestyle choices.

SECONDARY SCHOOL: In the summer of 2012, Stoke Damerel Community College was invited to become one of 21 Pioneer Schools as part of the Prime Minister’s Challenge on Dementia. The school took a unique approach to dementia education, placing it across the curriculum into as many subjects as possible and endeavouring to work in partnership with their community and local and national organisations. They placed emphasis on creative processes and outcomes, intergenerational contact and active learning. Subject leaders were actively engaged in determining the shape of dementia education in their own subjects. Some of the most successful projects at the school were those that involved creative ways of working and intergenerational activities. For example, as part of the PE curriculum, people with dementia visited the school to play croquet with year 7 students. For more information visit http://www.sdcc.net (Source Alz Soc Youtube)

In addition to Primary and Secondary school, Scout groups have also joined the cause On such program is A Million Hands a program that supports 4 main social issues, dementia being one of the four that have been selected by the young. The objective is to empower and enable the young and the youths to tackle these issues head on and have the courage to make a change. In the areas of dementia, Scouts may find themselves helping people with dementia to fight isolation or helping with awareness by teaching people to spot signs and symptoms of dementia.They may work to try and work to make communities more accessible and even work to campaign for a cure and improve the lives of people with dementia.

Dementia as part of the educational curriculum could well be a means to improve not just the future of our children but perhaps the society as a whole.

Can Dementia-Friendly Communities help to lower the risk of dementia

An article in Scientific American report clear evidence provided by the Cognitive Function and Aging Study (CFAS), spearheaded by Professor Carol Brayne (University of Cambridge); evidently showing that rates of dementia in older adults have fallen by 24 percent in parts of the UK (Matthews et al. 2013).

Singapore has recently launched the Forget Us Not campaign aimed at building dementia friendly communities in the country (http://www.forgetusnot.sg/).

Forgot me not appears to be an informative website providing people with basic information on dementia and how they can help people with dementia. Hopefully, with this campaign, more people will also be inspired to learn more about dementia and prevention. Making changes in their lifestyle and increasing physical activity. Perhaps with more initiatives like these the country can help to reduce the prevalence of dementia which stems from risk factors brought about by life choices.

Don’t forget to check out the resources for updated information on dementia specific resources for Chinese caregivers.

Source: Is Dementia Risk Falling? – Scientific American