July 2019| University of Exeter – Apathy: The forgotten symptom of dementia
Apathy is the most common neuropsychiatric symptom of dementia, with a bigger impact on function than memory loss – yet it is under-researched and often forgotten in care.
A new study has found that apathy is present nearly half of all people with dementia, with researchers finding it is often distinct from depression.
Although common, apathy is often ignored as it is less disruptive in settings such as care homes than symptoms like aggression. Defined by a loss of interest and emotions, it is extremely distressing for families and it is linked with more severe dementia and worse clinical symptoms.
Now, research led by the University of Exeter and presented at the Alzheimer’s Association International Conference in LA has analysed 4,320 people with Alzheimer’s disease from 20 cohort studies, to look at the prevalence of apathy over time.
At the start of the study, 45% presented with apathy, and 20% had persistent apathy over time. Researchers found that a proportion had apathy without depression, which suggests that the symptom might have its own unique clinical and biological profile when compared to apathy with depression and depression only.
Miguel de Silva Vasconcelos, PhD student at the University of Exeter and King’s College London, said : “Apathy is an under-researched and often ignored symptom of dementia. It can be overlooked because people with apathy seem less disruptive and less engaging, but it has a huge impact on the quality of life of people living with dementia, and their families. Where people withdraw from activities, it can accelerate cognitive decline and we know that there are higher mortality rates in people with apathy. It’s now time this symptom was recognised and prioritised in research and understanding.”
Professor Clive Ballard, of the University of Exeter Medical School, said: “Apathy is the forgotten symptom of dementia, yet it can have devastating consequences. Our research shows just how common apathy is in people with dementia, and we now need to understand it better so we can find effective new treatments. Our WHELD study to improve care home staff training through personalised care and social interaction included an exercise programme that improved apathy, so we know we can make a difference. This is a real opportunity for interventions that could significantly benefit thousands of people with dementia.”
The presentation was entitled ‘The Course of Apathy in People with Dementia’.
Aside from this criminal behaviour, Ms Hausler said the standards at her father’s aged care facility declined after a new operator reduced staffing levels and employed carers with little training. Call bells went unanswered, she said, and incontinence pads were rationed.
Ms Hausler has called for increased ratios of registered nurses in aged care facilities, and better training and registration for carers.
Under-staffing and inadequate training have long been problems in Australia’s aged care facilities, with aged care facilities employing fewer registered and enrolled nurses and more carers who have lower levels of training.
A registered nurse (RN) provides nursing leadership and clinical supervision in aged care facilities. They are skilled clinicians who can respond to medical emergencies and are qualified to carry out assessments.
An enrolled nurse (EN) conducts observations and assessments, and collaborates with and seeks assistance from the registered nurse in charge. Enrolled nurses are registered with AHPRA and undergo an 18-month diploma of nursing at TAFE.
Finally, care workers form the bulk of the aged care workforce and perform tasks such as showering, dressing and feeding residents. Titles for carers vary and include assistant in nursing, personal care worker, personal care attendant, and aged care worker, to name a few.
Care workers are required to complete a certificate III-level course, which can take up to six or seven months, but don’t require registration.
Carers cost less than nurses
There is no clear legislation requiring a certain number of registered nurses, enrolled nurses and carers to be on duty at certain point in time. The Aged Care Act 1997 is open to interpretation, so aged care providers are largely free to set their own staffing levels.
Research shows having a greater number of registered nurses increases patients’ well-being and safety. Better staffing levels allow nurses to spend more time caring for residents and reduces the likelihood that vital information is overlooked.
Employing skilled registered nurses in aged care facilities can also save the health system money by reducing the number of costly hospital admissions that arise because residents can’t be adequately cared for in their aged care facility.
Aged care residents often have mental health issues, face cognitive decline or dementia, take multiple medications each day, are physically frail, and often have multiple chronic conditions such as heart disease, diabetes, cancer, arthritis or asthma.
But it’s difficult to meet the needs of these patients with the current aged care staffing and skill levels.
More than 50% of the residents in a residential aged care facilities have some form of dementia, for example, yet more than 50% of aged care workers have no dementia training.
Substituting registered nurses with lesser skilled carers has meant tasks such as medication management have been assigned to carers in some aged care facilities, despite this being a high-risk task that requires a high level of skill and experience.
What are the solutions?
Carers currently make up around 70% of the aged care workforce. We need to reset aged care staffing levels and ensure we have the right skill sets, which industry bodies suggest is: 30% registered nurses, 20% enrolled nurses and 50% care workers.
Registration would clarify carers’ roles and allow only the delegation of tasks which are deemed safe for carers to carry out within their scope of practice. It would also ensure minimum training standards are met and that quality and safety is maintained.
The aim is not to vilify carers, who are the backbone of our aged care system, but rather to highlight the need for the right level of training, education and support to strengthen the aged care workforce and complement the care provided by registered and enrolled nurses.
Finally, we also need to increase the number of registered and enrolled nurses in the aged care workforce with guided pathways to attract and retain nurses. Well-structured graduate nurse programs, for instance, can provide support and guidance to the graduates who are considering a career in aged care.
April 2019 | University of Pennsylvania – Empathy and cooperation go hand in hand
Taking a game theory approach to study cooperation, School of Arts and Sciences evolutionary biologists find that empathy can help cooperative behavior ‘win out’ over selfishness.
It’s a big part of what makes us human: we cooperate. But humans aren’t saints. Most of us are more likely to help someone we consider good than someone we consider a jerk.
How we form these moral assessments of others has a lot to do with cultural and social norms, as well as our capacity for empathy, the extent to which we can take on the perspective of another person.
In a new analysis, researchers from the University of Pennsylvania investigate cooperation with an evolutionary approach. Using game-theory-driven models, they show that a capacity for empathy fosters cooperation, according to senior author Joshua Plotkin, an evolutionary biologist. The models also show that the extent to which empathy promotes cooperation depends on a given society’s system for moral evaluation.
“Having not just the capacity but the willingness to take into account someone else’s perspective when forming moral judgments tends to promote cooperation,” says Plotkin.
What’s more, the group’s analysis points to a heartening conclusion. All else being equal, empathy tends to spread throughout a population under most scenarios.
“We asked, ‘can empathy evolve?’” explains Arunas Radzvilavicius, the study’s lead author and a postdoctoral researcher who works with Plotkin. “What if individuals start copying the empathetic way of observing each other’s interactions? And we saw that empathy soared through the population.”
Plenty of scientists have probed the question of why individuals cooperate through indirect reciprocity, a scenario in which one person helps another not because of a direct quid pro quo but because they know that person to be “good.” But the Penn group gave the study a nuance that others had not explored. Whereas other studies have assumed that reputations are universally known, Plotkin, Radzvilavicius, and Stewart realized this did not realistically describe human society, where individuals may differ in their opinion of others’ reputations.
“In large, modern societies, people disagree a lot about each other’s moral reputations,” Plotkin says.
The researchers incorporated this variation in opinions into their models, which imagine someone choosing either to donate or not to donate to a second person based on that individual’s reputation. The researchers found that cooperation was less likely to be sustained when people disagree about each other’s reputations.
That’s when they decided to incorporate empathy, or theory of mind, which, in the context of the study, entails the ability to understand the perspective of another person.
Doing so allowed cooperation to win out over more selfish strategies.
“It makes a lot of sense,” Plotkin says. “If I don’t account for your point of view, there will be many occasions when I judge you harshly when I really shouldn’t because, from your perspective, you were doing the right thing.”
To further explore the impact of empathy on cooperation, the researchers looked at a variety of frameworks, or social norms, that people might use to assign a reputation to another person based on their behavior. For example, most frameworks label someone “good” if they reward a fellow “good” individual, but social norms differ in how they judge interactions with a person deemed bad. While the “stern judging” norm labels “good” anyone who punishes a bad actor, the “simple standing” norm does not require this punitive approach: A “good” person can reward a bad one.
Plotkin, Radzvilavicius, and Stewart discovered again that capacity for empathy mattered. When populations were empathetic, stern judging was the best at promoting cooperation. But when a group was less willing to take on the perspective of another, other norms maximized rates of cooperation.
This result prompted the team to ask another evolutionary question—whether empathy itself can evolve and become stable in a population. And under most scenarios, the answer was yes.
“Starting with a population where no one is empathetic, with people judging each other based on their own perspective, we saw that eventually individuals will copy the behavior of those who judge empathetically,” says Plotkin. “Empathy will spread, and cooperation can emerge.”
This was the case even when the researchers accounted for a degree of errors, noise, and misperception in their models.
The findings open up a new area of research for both evolutionary theory and empirical studies into how societies behave.
“Empathy is completely foreign to game theory,” Radzvilavicius say. “In a way this is finding a new niche for research to progress to in the future, accounting for theory of mind.”
Looking ahead, the Penn team hopes to pursue such questions, perhaps by pitting different social norms against one another and eventually by testing their ideas against observations from real people, either through experiments they design or through data collected from social media.
“It’s obvious that in social media people are acutely aware of their public persona and reputation and curate it carefully,” Plotkin says. “It would be fascinating to analyze these evolutionary dynamics as they play out in online interactions.”
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.