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.
It’s an uncomfortable image to consider: an elderly person – perhaps somebody you know – physically restrained. Maybe an aged care resident deemed likely to fall has been bound to his chair using wrist restraints; or someone with dementia acting aggressively has been confined to her bed by straps and rails. These scenarios remain a reality in Australia.
The Australian government has recently moved to regulate the use of physical and chemical restraints in aged care facilities. This comes ahead of the Royal Commission into Aged Care Quality and Safety.
Certainly this is a step in the right direction – but banning physical restraint is unlikely to remove it from practice. If we want to achieve a restraint free approach we need to educate the sector about viable alternatives, which aren’t always pharmacological.
The rate of physical restraint in Australia is difficult to ascertain. One study across five countries examining the care of residents over one week reported between 6% (Switzerland) and 31% (Canada) of residents had been physically restrained.
These figures suggest a substantial, ingrained issue with multiple contributing factors. Issues might include inadequate staff knowledge and skills, insufficient resources, and difficulty accessing specialist services.
While injuries caused directly by physical restraint could include falls and nerve injury, the impacts go beyond this. A significant consequence of restraint is its immobilising effects which can lead to incontinence, cognitive decline and a general deterioration in a person’s physical condition.
In physically restraining residents, staff are failing to employ other evidence‐based interventions. Behavioural and psychological symptoms of dementia can be managed by strategies such as improving sleep, controlling pain, music therapy, orientation therapy, and, if required, one-to-one care.
Preventing falls requires a multi-pronged approach including strengthening, balance training, medication review and co-ordination of care between doctors, nurses and therapists.
Physical restraint breaches a person’s human rights and dehumanises older members of our community.
Restraints don’t work
Our recent review of studies into the practice identified 174 deaths of nursing home residents due to physical restraint. The eight studies reviewed came from the US and Europe between 1986 and 2010.
This research reaffirmed the view that restrained individuals still experience falls, which the restraints often seek to prevent. But perhaps most compelling were the findings that physically restraining patients with dementia increases agitation, worsens behavioural and psychological symptoms, and hastens their cognitive decline.
We’ve also undertaken a detailed analysis of resident deaths in Australian nursing homes reported to the coroner between 2000 and 2013. This uncovered only five deaths due to physical restraint. All residents had impaired mobility and the physical restraints had been applied to prevent falls. The residents died from neck compression and entrapment caused by the restraints.
Most would expect the use of physical restraints would be closely monitored, with any harm reported to a regulatory or professional body. This is not necessarily the case in Australia.
Reporting often lags due to an unclear understanding about what constitutes physical restraint, and perhaps because little is forthcoming in the way of alternatives to address these residents’ care needs.
The only systematic voluntary scrutiny that could apply exists in principle, though not largely in practice, via the National Aged Care Quality Indicator Program. Fewer than 10% of aged care providers around the country participate in the quality indicator program, and the results of these audits are yet to be released publicly.
It’s only when a death occurs that a report to an independent authority – the Coroner’s Court – is made.
Similar laws introduced in other countries to ban physical restraint haven’t worked. In the US, there was an initial decrease in use of restraint and then a gradual return to previous levels.
Abolishing the use of physical restraints on nursing home residents remains challenging because of the widespread but incorrect perception that physical restraints improve resident safety. Nursing staff report using physical restraints to guarantee residents’ safety; to control resident behaviour while fulfilling other tasks; or to protect themselves and others from perceived harm or risk of liability.
Changing laws does not change attitudes. Education and training is required to dispel the myths and inform that better options than physical restraint already exist. Otherwise staff, family and the general public will continue with a mistaken belief it is safer to restrain a person than allow them to move freely, or that restraint is necessary to protect other residents or staff.
Our team convened an expert panel to develop recommendations for addressing the issue. We considered three of our 15 recommendations to prevent the use of physical restraint among nursing home residents the most important.
The first is establishing and mandating a single, standard, nationwide definition for describing “physical restraint”. A universal definition of what constitutes physical restraint enables consistent reporting and comparability in nursing homes.
Secondly, when there are no viable alternatives to physical restraint, any use should trigger mandatory referral to a specialist aged care team. This team should review the resident’s care plan and identify strategies that eliminate the use of physical restraint. This requires improved access to health professionals with expertise in dementia and mental health when a nursing home calls for help.
Thirdly, nursing home staff competencies should be appropriate to meet the complex needs of residents, particularly those with dementia. This is the long term solution to eradicate the need to apply physical restraint and is achievable with national education and training programs.
The harm from physical restraint is well documented, as are the potential solutions. Changing the legislation is a necessary step, but will not change practice on its own. Addressing as many of the underlying contributing factors as possible should commence alongside the government’s call for tougher regulations.
Family care of an older adult has emerged as an essential element of the U.S. health care system, with 83 percent of long-term care provided to older adults coming from family members or other unpaid helpers. As the population of older adults grows, so too does the expectation of family care for persons living with dementia.
We have engaged in decades of research, documenting the impact of dementia caregiving on the health and well-being of the caregiver. We have also conducted research to create evidence-based interventions that can be defined as structured programs with positive results that have been scientifically proved through clinical trials.
Family caregivers experience multiple challenges daily when caring for a person with dementia, whose care needs steadily increase as cognitive abilities decline. Care burdens can have high physical, emotional and financial costs. An overview, or a meta-analysis, of 84 studies found that caregivers experienced more depression and stress than non-caregivers.
While scientific research has demonstrated the value of providing education, skills training and support to family caregivers, we have found in our research that health care and social service providers do not routinely provide support programs based on evidence-based interventions. Thus, for the vast majority of family caregivers, caregiving support services remain extremely fragmented if not elusive. Family caregivers are often left alone to provide care that can be complicated and exhausting 24/7.
From our experience, the lack of caregiving support services that are evidence-based is not solely driven by neglect from health care and social support service providers. Rather, existing evidence-based interventions require dedicated personnel who must be trained to deliver the intervention, yet the delivery of the intervention are not covered by Medicare and other third-party payers.
Without care for the caregiver, the system crumbles
We believe that forging strong partnerships between health care systems that frequently see patients with dementia and the community-based organizations that provide ongoing supportive services that help caregivers develop skills to deal with negative behaviors associated with memory loss (e.g., agitation or wandering) is necessary to bridge the gap in caregiving services.
Leveraging technology, such as offering online information and support to increase educational opportunities and perhaps even automating some aspects of intervention delivery, will help ensure access to services to the widest possible audience. Working directly with employers to provide proven services to the workforce could mitigate the negative economic impact of premature employment reduction.
While changes in the health care system and workplace are important, we believe that all sectors of our society need to more formally recognize family caregiver services. Such an approach can change attitudes, reduce stigma and foster caring and supportive behavior toward those living with dementia. One example is the Dementia Friendly America initiative, a national effort to support and serve those who are living with dementia, their caregivers and families.
Communities are also taking action by leveraging tailored resources in business, community-based services and supports, faith communities, health care communities, legal and financial services, local government and residential settings.
While improvements are needed in all community sectors recognized by the Dementia Friendly America model, this is especially so in the health care sector. Family caregivers are the source of greatest impact on the health of a person living with dementia, yet are often excluded in conversations with the person’s health care providers. Health care providers should be encouraged to document the role of the family caregiver in the a patient’s electronic health record.
Also, health care providers should make every attempt to involve the family caregiver in all health care interactions, especially in discharge planning after a hospital stay. As a sector, health care systems can also facilitate a dementia friendly approach by directing families to community-based social support services to address common challenges such as getting medications and transportation to health care appointments.
There is a role for higher education as well. Colleges and universities could help prepare a dementia-friendly health care work force to meet the needs of the growing numbers of persons with dementia, estimated to nearly triple by midcentury with an American being diagnosed with dementia every 33 seconds. Attention to dementia-friendly practices such as differentiating dementia from normal aging, early investigation of dementia symptoms by a health care professional and basic training in how to communicate with a person with dementia should be encouraged across the social and health disciplines.
Our care system depends heavily on family caregivers. If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs.
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.