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?
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.
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.
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.
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.
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:
a shared campus model where an aged care centre is located in the same place as a childcare centre
a visiting campus model where childcare and aged care centres are located separately and one group travels to visit the other.
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.
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.
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.
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.
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.