FEBRUARY 2019| National Ageing Research Institute Limited. (NARI) – Multi-media movies to build understanding about dementia in multicultural Australia
Moving Pictures, an innovative multi-media program to raise awareness about dementia in people from multicultural communities, and how to access help has been launched in Melbourne by Minister for Senior Australians and Aged Care Ken Wyatt AM.
Coordinated by NARI, Moving Pictures is made up of fifteen short films co-produced with people from Tamil, Hindi, Cantonese, Mandarin and Arabic communities – Australia’s top five fastest growing cultural and linguistic groups.
The launch was attended by some of the movies’ stars who were congratulated by the Minister for becoming involved.
“I congratulate everyone involved in Moving Pictures because early awareness and diagnosis is one of the keys to giving people living with dementia better, longer lives,” said Minister Wyatt.
“Having seen the research team at work, I know Moving Pictures will make a big difference to so many families and individuals in our multicultural nation,” he added.
Carer Sonchoita Sagar, aged 46, signed up to take part in the project because she knew only too well what it was like to navigate the system for help. She came to Australia from India and has lived here for 20 years. A professional yoga instructor, Sonchoita cared for her mother and parents-in-law. It took her several years before she understood the system and where and how to ask for help.
Sonchoita was joined by Sukhwinder Rakhra, Miranda Mak, Mary Enkababian and Anita Barar, each of whom have their own experience as carers. In all, 57 families and 19 service providers in Melbourne, Sydney, and Perth were involved in the films’ production.
Associate Professor Bianca Brijnath, Director Social Gerontology, said Moving Pictures was a critical step forward in helping people from CALD backgrounds understand more about dementia and the services that are available.
“The reality is that there is limited awareness about dementia and that is resulting in delayed diagnosis, poorer prognosis, and a higher burden of care on families and health systems,” Dr Brijnath said.
Using film making to inform and educate these communities about dementia, and the importance of early diagnosis of dementia for better treatment and quality of life was deliberate, according to Dr Brijnath. “Film-making has a long history of portraying the cultural complexities of everyday life, and lends itself well to the communities Moving Pictures is trying to reach,” Dr Brijnath added.
Moving Pictures was made in conjunction with Curtin University and guided by Dementia Australia, Chung Wah Association, Australian Nursing Home Foundation, Federation of the Indian Association of Victoria, the South Western Sydney Local Health District, and the Australian Arab Association.
Depending on funding the NARI team is anticipating taking the Moving Pictures concept to India and China. Globally, India and China are poised to have a 90% increase in dementia prevalence by 2020.
“Given such high numbers, these films have potential to become an international resource, pioneered in Australia, and adaptable to different cultural settings and varying literacy levels,” Dr Brijnath said.
Moving Pictures has been funded through the Federal Government’s Dementia and Aged Care Services research and innovation grants. The films, together with a mobile-optimised website and dementia comics, will now be rolled out across Australia.
If you engage in cognitively stimulating activities in midlife, such as reading and playing games, you can reduce dementia risk by about 26 per cent, according to research. (Unsplash/Rawpixel), CC BY-SA
This number is growing: around 50 million people live with dementia today, and this number will rise to over 130 million worldwide by 2030.
You do not have to wait until you are 65 to take action. In the absence of treatment, we must think of ways to protect our brain health earlier. This month is Alzheimer’s Awareness month — what better time to learn how to reduce your risk of dementia, whatever your age?
There are three dementia risk factors that you can’t do anything about: age, sex and genetics. But a growing body of evidence is discovering early-life, mid-life and late-life contributors to dementia risk that we can do something about — either for our own or our children’s future brain health.
Before going any further, let’s clear up some common confusion between Alzheimer’s disease and dementia. Dementia is a term to describe the declines in cognitive abilities like memory, attention, language and problem-solving that are severe enough to affect a person’s everyday functioning. Dementia can be caused by a large range of diseases, but the most common is Alzheimer’s.
Poorer nutritional opportunities that often accompany low socioeconomic position can result in cardiovascular and metabolic conditions such as hypertension, high cholesterol and diabetes that are additional risk factors for dementia.
And low education reduces the opportunities to engage in a lifetime of intellectually stimulating occupations and leisure activities throughout life that build richer, more resilient neural networks.
Aerobic activity not only helps us to maintain a healthy weight and keep our blood pressure down, it also promotes the growth of new neurons, particularly in the hippocampus, the area of the brain most responsible for forming new memories.
Stay social and eat well in later years
While the influences of socioeconomic position and engagement in cognitive and physical activity remain important dementia risk factors in late life, loneliness and a lack of social support emerge as late life dementia risk factors.
You have heard that you are what you eat, right? It turns out that what we eat is important as a dementia risk factor too. Eating unrefined grains, fruit, vegetables, legumes, olive oil and fish, with low meat consumption — that is, a Mediterranean-style diet — has been linked to lower dementia rates.
Leading an engaged, healthy lifestyle is thought to increase “cognitive reserve” leading to greater brain resiliency such that people can maintain cognitive functioning in later life, despite the potential accumulation of Alzheimer’s pathology.
Thus, although all of these factors may not stop Alzheimer’s disease, they can allow people to live longer in good cognitive health. In my mind, that alone is worth a resolution to lead a healthier, more engaged lifestyle.
Everyone has their own idea of what quality of care and quality of life in residential aged care may look like. The Conversation asked readers how they would want a loved one to be cared for in a residential aged care facility. What they said was similar to what surveys around the world have consistently found.
Characteristics that often appear as the basis for good quality of life include living in a home-like rather than an institutionalised environment, social connection and access to the outdoors. Good quality of care tends to focus on providing assistance that is timely and appropriate to individual needs.
A mature judgment to determine good quality requires us to recognise that many people have an instinctive and distressingly bleak view of ageing, disability, dementia and death. Some people express this as death being preferable to living in aged care, as the tweet below shows.
This doesn’t necessarily reflect an objective assessment of the actual care being delivered in residential facilities, but it does speak to the fear of losing independence, autonomy and identity.
In a survey of patients with serious illnesses hospitalised in the US, around 30% of respondents considered life in a nursing home to be a worse fate than death. Bowel and bladder incontinence and being confused all the time were two other states considered worse than death.
Aged care facilities will be the final residence for most before they die. This means the residents’ sense of futility and the notion one is simply waiting to die can and should be addressed.
Our reason for being is usually expressed through social connections. This a recurring theme for residents who define quality of care as whether or not residents have friendships and are allowed reciprocity with their caregivers.
A systematic review that drew together a number of studies of quality in aged care found residents were most concerned about the lack of individual autonomy and difficulty in forming relationships when in care.
The need for positive social connections for residents extends to the relationships between staff and families. Achieving this requires staff with a positive attitude who work to build trust and involve family in their loved one’s care. They must also engage on issues that have meaning to the individuals.
Good staff should be both technically proficient and, perhaps more importantly, good with people.
Idyllic, or the way it should be?
A home-like setting – which may include having a pet and enjoying time in nature, as the Tweet below describes – may seem idyllic. However, more contemporary models of care are moving towards smaller home-like environments that accommodate fewer people and are more like a household than a large institution.
The ability to relate and personalise care to a small group of 10-12 residents is surely easier than catering to 30-60 residents. Some studies in the US have shown residents in such smaller units have an enhanced quality of life that doesn’t compromise clinical care or running costs.
This cluster-style housing still has limitations that need to be addressed. These include selecting residents who are suitable together and catering for the changing clinical and care needs of each individual.
Pets and the outdoors
Research into the value of pets in aged care has largely focused on the benefits to people living with dementia. Introducing domestic animals, typically dogs, has been shown to have positive effects on social behaviours, physical activity and overall quality of life for residents.
Similarly, providing accommodation where the physical environment and building promote engagement in a range of indoor and outdoor activities, and allow for both private and community spaces, is associated with a better quality of life.
Another major determinant of quality of life in residential aged care is the quality of food. This becomes even more important as people age. Providing high-quality food and enriching meal times is more challenging as many diseases such as dementia and stroke affect older people’s dentition and swallowing.
Aged care services need proactive and innovative approaches to overcome these deficits and better promote general health.
A key feature often overlooked is the cultural significance of food. Providing traditional foods to residents strengthens their feeling of belonging and identity, helping them hold on to their cultural roots and enhance their quality of life.
Safety, dignity, respect and choice
While the focus is often on preventing abuse, neglect and restrictive practices in aged care, the absence of these harmful events doesn’t equate to a positive culture. Residents want and have a right to feel safe, valued, respected and able to express and exercise choice. Positive observation of these rights is essential for quality of life.
Clinical and personal care
Time is a factor in aged care, as staff often don’t have enough time to spend with each resident. A recent ABC Four Corners investigation into quality in aged care found personal care assistants had only six minutes to help residents shower and get dressed. No wonder, then, that staff often don’t have the personal time to be able to spend with residents who need life to be a little slower, as the Facebook comment below shows.
Clinical care is another important aspect of quality aged care. A resident cannot enjoy a good quality of life if their often multiple and chronic conditions such as diabetes, heart failure and arthritis are poorly managed by their doctors and nurses.
Residents in aged care are the same as those who live in the community. They are people with the same needs and wants. The only difference is they need the community to give the time, effort and thought to achieve a better life.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
From time to time, we hear or read about medical procedures or treatments that can be ineffective and needlessly drive up the nation’s health-care costs. This occasional series explores such procedures individually and explains why they could cause more harm than good in particular circumstances.
Antipsychotic medications were initially developed to treat schizophrenia, a mental health condition characterised by psychotic symptoms such as delusions and hallucinations. Because of their sedative effects, antipsychotic medications (such as risperidone, olanzapine, quetiapine and haloperidol) are often used to “manage” people with dementia.
People with dementia often experience a range of psychological symptoms and behaviour changes. These can include anxiety, sleep disturbance, pacing, wandering, crying out, agitation, delusions and hallucinations.
These are referred to as “behavioural and psychological symptoms of dementia” (BPSD) though the term “responsive behaviours” has also been adopted to help explain their cause, signalling that there are often reasons behind the behaviours. Understanding and treating these reasons is the best way to approach these behaviours.
Antipsychotic medications are known as psychotropic medications. These are drugs that alter a person’s mental state and include antipsychotics, antidepressants, benzodiazepines and anticonvulsants, which are also used to sedate patients in nursing homes. These come with significant and serious risks. Clinical guidelines recommend such medications be used only as a last resort.
Psychotropic medicines should only be considered when non-pharmacological interventions have failed and the patient has symptoms that are distressing for them, their family or fellow residents.
Dementia is not just a single disease. It’s a term describing symptoms associated with more than 70 separate diseases, including Alzheimer’s disease and Lewy body dementia. The condition affects many brain functions including language, personality and reasoning skills, not just memory, which is usually associated with the condition.
Responsive behaviours in people with dementia vary according to the type and severity of their disease. They also fluctuate over time. A Canadian study of 146 aged care residents assessed these behaviours monthly for six months, revealing a wide variation in their duration and frequency. Results showed most responsive behaviours lasted for less than three months with usual care.
Many responsive behaviours in people with dementia are thought to result from, or be worsened by, unmet needs (pain, hunger), the environment (over- or under-stimulation), social needs (loneliness or need for intimacy) and approaches of carers or others. Sometimes these behaviours are caused by an acute medical illness on top of the dementia, such as an infection. Other times the behaviours arise from the disease process of dementia itself.
Each cause requires different treatment. For example, an infection shouldn’t be missed, nor should pain, each requiring different strategies. So, the first step for those around the person, both health care professionals and family carers, is to work out why they are behaving a certain way rather than reaching for a script pad.
Psychotropic use in aged care
Psychotropic medications are often over-used. The main evidence for excessive use of psychotropics such as antipsychotics in dementia in Australia has been collected in aged care homes. A recent study, that one of the authors was involved in, examined antipsychotic use in 139 homes across all six states and the ACT during 2014-2015. It assessed the use of antipsychotics in more than 11,500 residents.
We found that 22% of residents were taking an antipsychotic medication every day. And concerningly, more than 10% of residents were charted for a “when required” antipsychotic. This means they could be given an antipsychotic dose when a behaviour occurred that their carer decided was necessary to medicate, or a top-up dose in addition to their regular dose.
Excessive use of antipsychotics in older people does not appear to be confined to the residential aged care sector. A 2013 district nursing study of 221 people with dementia living in their own homes found that 18% were prescribed these medications.
Many trials have examined the effectiveness of antipsychotics to treat agitation in people with dementia. These studies show they only offer benefit to about 20% of people with these symptoms and appear to offer no benefit for other responsive behaviours such as wandering, crying out or anxiety.
There are times when behaviours can be severe and disabling and impact the quality of life for the person with dementia. Sometimes the behaviours may put the person or others at risk. In these cases, careful prescribing is recommended. When needed for responsive behaviours, antipsychotics should be taken at the lowest effective dose for a maximum of three-months.
If people are in pain, it is absolutely essential that this is treated. One study showed using increasingly strong analgesia was as effective in treating agitation in dementia as antipsychotics.
Advice for family members
Family members need to understand and be aware of these symptoms and behaviours, their treatment and alternatives and be part of finding out why they are happening as well as the solution.
This includes being aware that legally, psychotropics must be prescribed with consent, either from the person themselves or from their substitute decision-maker. Families should not just be finding out about use of medications when they receive the pharmacy bill.
Families need to make sure that the facility their loved one resides is in is aware of and uses this service, so they don’t have to resort to using drugs first. The 24-hour helpline number is 1800 699 799.
Many of us pay close attention to how our taxes are spent, and how well governments invest in infrastructure projects such as roads, schools and hospitals. Value for money is key. Yet horror stories of waste, lateness and poor quality are common.
To develop and finance public services and infrastructure, governments around the world (but especially in Europe) have become increasingly keen on private sector involvement. These cross-sector collaborations can help provide value for money for taxpayers – but they are also at risk of wasting it.
In health care, collaborations between public and private partners have a direct impact on society. This is why it is important for health care professionals like doctors and nurses to talk directly to the designers and builders of a new hospital. It ensures that these projects not only deliver economic value for the private companies building the hospital – but also social value for the doctors, nurses and patients who will use the hospital for decades to come.
For instance, in one recently built British hospital, medical staff were able to bring valuable insight to the design process. A visit by some of the hospital’s senior nurses to a children’s hospital in the US led to the replication of a lighting design on the ceiling of a children’s ward so that it mimicked a starry night sky. As one of the nurses explained to me afterwards:
It might sound like a small change, but it provides a much more homely surrounding than the normal NHS lighting. This is important for our young patients [providing a] less scary, hospital experience which positively impacts on the healing process. […] It creates a much nicer environment in which our little patients can recover.
In another hospital, input from senior nurses helped to establish a ward design that most suited their professional needs – right down to the placement of plumbing. This saved large amounts of money that might have been spent on undoing unnecessary building work had the nurses not been consulted.
As one project manager of the construction company told me: “Thanks to [the senior nurses’] input and telling us how they intend to use wards, we changed the ward layout, such as the position of sinks. This may seem to be a minor issue, but may have a huge impact when caring for a patient.”
To see how social value can be best achieved through cross-sector collaborations we looked into the key building blocks that go beyond a mere focus on contracts.
An organisations’ prior experience of cross sector collaboration and a supportive climate is vital in creating social value. It also helps to have had some exposure to previous projects (good and bad). But a major ingredient is the individual employees in both public and private sector organisations.
Building mutual knowledge and aligning goals between doctors, nurses and design and construction professionals is key, as public and private sector employees often have different objectives for projects (making a profit vs healing patients). A shared understanding can come through listening to and appreciating the other parties’ professional language and the expertise that language expresses.
Beyond an understanding of the other parties’ expertise, practical matters of shared goals and jointly developed timelines are necessary. Coordinating efforts between the two sectors needs to take priority at the outset – rather than emphasising project speed and completion.
To encourage these positive outcomes, the key people need to meet frequently to exchange information, address problems and discuss plans. Without this kind of coordination and collaboration, it will be impossible to make the most of both sides’ specialist knowledge.
So when it comes to hospitals and clinics, the private company needs to actively seek the involvement of doctors and nurses in the design and construction phases. Similarly, doctors and nurses should not be threatened by private companies, but instead seek to become actively engaged. This will help drive creative design innovations such as the “night sky” ceiling in the children’s ward.
It takes time and resources, but this kind of collaboration and coordination between public and private sectors provides an opportunity to increase value – both economic and social. And that’s something that not only benefits construction companies and health care professionals – but patients and taxpayers, too.