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 College London, Gower Street, London – Dementia more preventable in Asia and Latin America
Close to one in two cases of dementia could be preventable in low- to middle-income countries, finds a new UCL study.
Dancing in Peru
The findings, published in The Lancet Global Health, found how improving childhood education and other health outcomes throughout life could reduce the risk of dementia.
“After our previous research finding that one in three cases of dementia could be preventable, we realised that the evidence was skewed towards higher-income countries,” said the study’s lead author, Dr Naaheed Mukadam (UCL Psychiatry).
“We have now found that in low- to middle-income countries in Asia and Latin America, dementia may be even more preventable than it is in more wealthy countries. If life-course risk factors such as low levels of education in early life and hearing loss, obesity and low physical activity in mid-life to old age are addressed, these countries could see large improvements in their dementia rates.”
While the number of people with dementia is increasing globally, particularly in low- to middle-income countries, there have been modest reductions in age-specific dementia rates in many high-income countries over the last two decades.* The researchers say this could be due to improvements in health outcomes throughout life that affect dementia risk.
The research team built on their previous work for the Lancet Commission on dementia prevention, intervention, and care, published in 2017, which found that 35% of dementia is attributable to nine risk factors: low levels of childhood education, hearing loss, smoking, hypertension, obesity, physical inactivity, social isolation, depression, and diabetes.*
To understand whether the commission’s findings would apply equally to global regions that were underrepresented in the report, a team of UCL researchers sought out data from China, India and Latin America. They drew from the research collective 10/66 Dementia Research Group’s data, which used similar methodology to gauge prevalence of the nine risk factors in those countries, with sample sizes of 1,000 to 3,000 in each country.
The researchers found even more potential for preventing dementia across the globe, as the proportion of dementia linked to the nine modifiable risk factors was 40% in China, 41% in India and 56% in Latin America.
A major factor in that difference is the lower levels of educational attainment in low- to middle-income countries, which the researchers say signals hope for the future, as education levels rise.
“People growing up in Asia and Latin America today are more likely to have completed schooling than their parents and grandparents were, meaning they should be less at risk of dementia later in life than people who are already over 65. Continuing to improve access to education could reap great benefits for dementia rates in years to come,” Dr Mukadam said.
On the other hand, social isolation is a major risk factor of dementia in higher income countries, but much less so in China and Latin America. The researchers say that public health officials in countries such as the UK could learn from China and Latin America in efforts to build more connected communities to buffer against the dementia risk tied to social isolation.
Obesity and hearing loss in mid-life, and physical activity in later life, were also strongly linked to dementia risk in the study area, as well as mid-life hypertension in China and Latin America and smoking in later-life in India.
“Reducing the prevalence of all of these risk factors clearly has numerous health benefits, so here we’ve identified an added incentive to support public health interventions that could also reduce dementia rates. The growing global health burden of dementia is an urgent priority, so anything that could reduce dementia risk could have immense social and economic benefit,” Dr Mukadam said.
Senior author Professor Gill Livingston (UCL Psychiatry) added: “A lot of the findings of health and medical research derive primarily from higher income countries such as in Western Europe and North America, so ensuring that research is inclusive is vital to the development of global public health strategies.”
“While we don’t expect these risk factors to be eliminated entirely, even modest improvements could have immense impact on dementia rates. Delaying the onset of dementia by just five years would halve its prevalence*,” she said.
The researchers are supported by the National Institute for Health Research UCLH Biomedical Research Centre, Wellcome, NIHR, Economic and Social Research Council, and NIHR Collaboration for Leadership in Applied Health Research and Care North Thames.
Research paper in The Lancet Global Health
Dr Naaheed Mukadam’s academic profile
* The Lancet Commission on dementia, prevention, intervention and care
People dancing in Peru. Credit: Alex Proimos, Source: Flickr
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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.
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.