See the person, not the behaviours, urge dementia textbook authors

A new textbook for health and aged care workers aims to establish non-pharmacological interventions as the best practice to address behaviours and psychological symptoms of dementia – BPSD.

Launched last week at the International Dementia Conference in Sydney and published by HammondCare, BPSD Textbook: Addressing behaviours and psychological symptoms of dementia seeks to reshape the narrative in aged care homes towards seeing the person living with dementia, rather than their behaviours.

These behaviours and symptoms are complex and varied. Among the most common: agitation and aggression, depression, anxiety, apathy, impulsivity, pacing, changes in appetite, sleep disturbances, and wayfinding difficulties.

Head of clinical services for HammondCare’s Dementia Centre Associate Professor Stephen Macfarlane – who authored the book along with Associate Professor Colm Cunningham and Dr Madeleine Healey – said understanding the person was the first and fundamental step in managing what is a multifaceted disease.

“If you take a hundred different people with agitation, there will be a hundred different causes for it,” Associate Professor Macfarlane told Australian Ageing Agenda. “At the moment people are seeing agitation and the end result is a prescription of an antipsychotic … that’s meant to be the last arm of management rather than the first.”

“These medications are ubiquitous and toxic and do people more harm than good.”

Up to 90 per cent of people living with dementia experience forms of BPSD while living with the disease and many will be wrongly prescribed medications or chemically and physically restrained.

According to the July-September 2021 report on the National Aged Care Mandatory Quality Indicator Program – the first to include quality indicators for medication management and based on data collected from 2,410 aged care services – 21.6 per cent of residents used an antipsychotic during the seven-day assessment period in the quarter.

Associate Professor Macfarlane explains in the book how the many medications prescribed for dementia – such as antipsychotics, antidepressants, benzodiazepines, inhibitors and opioids – have a limited response in treating BPSD when compared to non-pharmacological interventions, “yet these medications are ubiquitous and toxic and do people more harm than good.”

If psychotropic drugs do people “more harm than good”, it begs the question why is medication the go-to response for BPSD? “Partly it’s human nature, because if a pill can fix a problem, and if staff in aged care can make something the doctor’s problem, they don’t have to do anything.”

Associate Professor Macfarlane told AAA he can forgive workers leaning on medication as a cure-all as the education aged care workers receive about dementia in general, and behaviour management specifically, is very poor.

“You can become a [personal care assistant] by doing a six-week online course with an optional module in dementia. The nursing undergraduate curriculum barely touches on dementia at all, as does the medical curriculum … you need to educate workers better about what really is core business in aged care, which is dementia and the behaviours associated with it.”

Rather than a pharmacological response to BPSD, the book’s authors would like to see individuals given a holistic assessment examining various internal and external factors such as biological, psychological, lifestyle, social and environmental.

“I could make you agitated by turning the heating up in your room,” explained Associate Professor Macfarlane. “Is giving you an antipsychotic going to change the agitation? No. You have to find out the specific cause for the specific symptoms that people have got and address those causes rather than just giving a symptomatic treatment in the form of a sedative.”

Among the on-the-ground outcomes Associate Professor Macfarland would like to see as a result of the book is an upskilling in knowledge of non-pharmacological intervention and a better understanding of how to assess people with behaviour disturbance.

“I’d like to see it reorientate the practice, but that needs to be accompanied by improved training and education for frontline aged care workers and nursing and medical staff as outlined in the royal commission.”

You can buy the BPSD Textbook here.

Main image (from left): Professor Colm Cunningham, Dr Madeleine Healey and Associate Professor Stephen Macfarlane

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