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?
As the royal commission begins investigating the failures of the residential aged care sector, it is important such a review also considers the broader socio-political factors that have contributed to this crisis.
The commission needs to go beyond the institutional problems at individual aged care facilities, as these are a symptom of a much broader rejection of ageing in society and marginalisation of older people.
Negative stereotyping of older people is reinforced in the media, and this both informs and reflects societal attitudes. In Western society especially, we fear dependency, invisibility and dying. Aged care is a silo of these fears. And until it affects us personally, we ignore it.
How older people are marginalised in society
We have an expiry date in our society. This is not the date we die, but a time when our skills and knowledge are no longer considered to be valid or useful. Our value is largely determined by our economic contributions to society. But for many older people, this is difficult to demonstrate because they’re no longer in the workforce.
The economic impact of societal rejection of ageing is significant. Modelling by Price Waterhouse Cooper indicates that Australia’s gross domestic product would increase by almost 5% if people were supported to work longer. And data from the Australian Bureau of Statistics reveal that many Australians would like to retire later if they could.
Yet, there is evidence that older people are routinely denied work. In 2016, Age Discrimination Commissioner Susan Ryan said there was an urgent need to “tackle the discrimination that forces people out of work years before they want to leave”.
While older people should be supported to work longer if they wish, over half of Australians between the ages of 65 and 80 report a moderate or severe disability, resulting in greater dependency. A 2017 study of late-life dependency published in The Lancet found that, on average, older people will require 24-hour care for 1.3 to 1.9 years of their lives.
However, it is important that older people are not considered redundant in their societal role when dependency increases.
Aged care workers are also undervalued
Residential aged care facilities fulfil an essential role in our society. Yet, our recent ethnographic study in two residential aged care facilities in Victoria shows how this role has been compromised by an under-skilled, under-valued and overworked aged care workforce.
Older people were exposed to a revolving door of anonymous workers, significantly reducing opportunities for teamwork and fostering relationships between staff and residents. In one of the not-for-profit facilities, a single registered nurse was responsible for the care of 73 residents. This contributed to the delegation of an increasing range of tasks to unregistered personal care assistants with minimal training and delays in recognising signs of health deterioration among residents.
A reliance on general practitioners also increased the likelihood of hospital transfer. And hospital transfers can sometimes prove harmful, with previous studies showing that the noisy, fast-paced environment, bright lights and anonymous faces can have a negative impact on residents, particularly those with dementia.
Within the healthcare sector, aged care has the lowest status of all specialty areas amongst nurses and doctors. Recruiting appropriately qualified and skilled people to work in aged care is thus a constant challenge. Australia is expected to increasingly rely on imported labour to staff its aged care sector in the near future.
Ways to fix the system
Encouraging more healthcare professionals to enter the aged care sector will require a multi-pronged approach, starting with finding ways to engender more professional respect for those working in the field.
Greater emphasis also needs to be placed on improving the gerontological expertise of aged care workers. This can be strengthened by prioritising aged care in medical school education and recognising “nursing home” care as a specialist medical area. It is also imperative that personal care assistants receive greater recognition of the roles and duties they perform.
Registration of personal care assistants as third-tier health care professionals is well overdue to ensure better oversight of their training and scope of their practice.
We also need to recognise the importance of human connection in residential aged care facilities. This requires strategies to build better relationships between residents and staff, and developing a formula for more accurate staffing allocations that reflect the real time commitments involved in aged care.
Who bears the ultimate responsibility?
It’s not enough to be shocked by the aged care scandals uncovered by the media and the decision to appoint a royal commission to investigate. We must also make older people, their contributions and end-of-life needs more visible. Increased funding and oversight will only come when we collectively say it’s important.
It is incumbent on us to ensure that residential aged care facilities do not operate as holding bays for the silenced, or wastelands for the discarded, where the occupants are expected to demand nothing and be as little cost to society as possible.
We have an opportunity to reconstruct the delivery of residential aged care. Let’s begin with the end in mind: a society that not only values older people, but values the resources required to provide the care they need and deserve.
Last month the aged care minister Ken Wyatt announced he would introduce regulations to address the use of “chemical restraint” in residential aged care – a practice where residents are given psychotropic drugs which affect their mental state in order to “control” their behaviour.
Psychotropic medications used as “chemical restraints” are antipsychotics, antidepressants, anti-epileptics and benzodiazepines (tranquilisers).
Wyatt followed this announcement this month with a A$4.2 million funding pledge to better monitor care in nursing homes through mandatory “quality indicators”, and including one covering medication management.
Of course, you would be hard pressed to find a staff member admitting to controlling a resident by giving them a tablet. Instead, most staff would stress that medication was given to calm or comfort them.
But our research shows psychotropic use is rife in Australia’s aged care system.
Reforms are desperately needed, but we need to develop the right approach and learn from countries that have tried to regulate this area – most notably the United States and Canada.
What’s the problem with antipsychotic drugs?
Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.
But large reviews conclude they don’t work very well. They decrease agitated behaviour in only one in five people with dementia. And there is no evidence they work for other symptoms such as calling out and wandering.
Due to their limited effect – and side effects, including death, stroke and pneumonia – guidelines stress that antipsychotics should only be given to people with dementia when there is severe agitation or aggression associated with a risk of harm, delusions, hallucinations, or pre-existing mental illness.
The guidelines also state antipsychotics should only be given when non-drug strategies such as personalised activities have failed, at the lowest effective dose, and for the shortest period required.
The high rates of antipsychotic use in Australian aged care homes indicates the guidelines aren’t being followed.
In our study of more than 12,000 residents across 150 homes, we found 22% were taking antipsychotics every day. More than one in ten were were charted for these drugs on an “as required” basis.
We also found large variations in use between nursing homes, ranging from 7% to 44% of residents. How can some homes operate with such low rates, whereas others have almost half their residents taking antipsychotic medications?
Regulations to reduce chemical restraint
Of all countries, the US has made the most effort to address high rates of antipsychotic use.
After reports in the 1980s highlighting poor nursing home care, Congress passed the Omnibus Budget Reconciliation Act which sets national minimum standards of care, guidelines to assist homes to follow the law, and surveyors to enforce it.
For residents with dementia and behavioural symptoms, the regulations require documentation of the behaviour, a trial of non-drug strategies such as activity programs, and dose reductions after six months.
Homes that don’t meet these regulations are subject to a series of sanctions, ranging from financial penalties to closure.
The regulations were initially associated with substantial declines in antipsychotic use. By 1995 only 16% of residents were taking them.
But average rates of use rose to 26% by 2010. And in 2011, a Senate hearing found 83% of claims for antipsychotics in nursing homes were prescribed for unlicensed use.
This led advocates to conclude the regulations and surveyor guidance were ineffective.
Quality indicators to reduce chemical restraint
Another way to reduce antipsychotic use in aged care homes is by mandatory quality indicators, along with public reporting. The US introduced this in 2012. A similar system was instituted in Ontario, Canada, in 2015.
Measures are essential for quality improvement. But they can also lead to unintended consequences and cheating.
In the US, antipsychotic rates for people with dementia has allegedly reduced by 27% since the start of their quality indicator program.
But those diagnosed with schizophrenia were exempt from reporting. Then the percentage of residents listed as having schizophrenia doubled from 5% to nearly 10% of residents within the first few years of the initiative. So 20% of the reduction was probably due to intentional mis-diagnosis rather than an actual decrease in antipsychotic use.
A recent US study has also shown that the use of alternative sedating medications not subject to reporting, specifically anti-epileptic drugs, has risen substantially as antipsychotic use declined, indicating widespread substitution.
In Ontario, the use of trazadone, a sedating antidepressant, has also markedly increased since its antipsychotic reporting program began.
In the US, nursing homes self-report indicators. A recent study compared nursing home data with actual prescribing claims, concluding that homes under-reported their antipsychotic prescribing, on average, by 1 percentage point.
Public reporting is often also time-consuming, with some researchers arguing that time spent managing quality indicators may be better spent providing care for residents.
Where to now?
Awareness of a problem is the first step to addressing it, and chemical restraint is a key issue coming to light in the aged care royal commission.
The proposed regulations and new quality indicator will allow homes and regulators to monitor the use of chemical restraint, but more importantly, should be used to assess the impact of training and other strategies to ensure appropriate use of psychotropic medications.
But to meet their full potential, these programs need to be carefully designed and evaluated to ensure that cheating, under-reporting and substitution does not occur like it did in North America.
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.