Australia’s leading dementia expert shares what families need to know about aged care

One of the greatest challenges in caring for people living with dementia is often not memory loss itself, but the behaviours that frequently accompany it, such as agitation, wandering, and aggression. Clinically, this is known as BPSD (behavioural and psychological symptoms of dementia).

Dr Stephen Macfarlane, psychogeriatrician and head of clinical services at Dementia Services Australia (DSA), recently met with Dementia Lens Orange to discuss what can be done to reduce the inappropriate use of medications for people experiencing BPSD in aged care.

“We know on entry to care that 50% of residents have a dementia diagnosis, and there’s probably another 20% in care who have dementia but don’t have the diagnosis formally,” Dr Macfarlane explained. “Of those people living with dementia, up to 95% will experience behaviour changes at some point during their illness.”

Chemical restraint refers to the use of psychotropic medications such as antipsychotics, antidepressants, opioids and sleeping tablets primarily to alter behaviours rather than treat a medical condition. Aged care legislation states that chemical restraint should only be used as a last resort, after alternative strategies have failed.

These protections exist for good reason. When used off-label to alter behaviours, psychotropics come with significant risks including strokes, falls and worsening cognition. They’re also known to have low efficacy when used for this purpose. According to Dr Macfarlane, “They don’t have a magical effect on BPSD.”

But even after the Royal Commission into Aged Care established in 2018, where Dr Macfarlane spoke on this matter twice, psychotropic medications are still being overprescribed for people living with dementia. It’s happening here in the Central West. It’s happening everywhere.

Dr Macfarlane explained that this issue is the result of a “chain of events with multiple failings” within the aged care system, including insufficient pay for aged care staff, and a lack of dementia-specific training for aged care staff, doctors and nurses.

“You can become an aged care worker by doing a course which has no training in dementia, let alone in BPSD. There are some optional modules, but they’re not enough. In that environment, the staff’s natural response is to look to the doctor.

“I’m not in any doubt that doctors looking after patients with BPSD genuinely believe that they are acting in the best interests of the patient. But what doctors have been taught to do, by and large with a few notable exceptions, is prescribe.”

Dr Macfarlane includes himself as one of the doctors who previously didn’t know enough about the treatment of BPSD, and thought that behaviour-altering drugs were the only option.

“Prior to working with DSA, I was working as an inpatient geriatric psychiatrist in a public hospital. I didn’t think the non-pharmacological strategies worked because my ward always held patients with BPSD for whom they had presumably failed, leading them to be admitted.”

After joining HammondCare (the organisation that leads DSA) in 2015 to set up their medical support model for the Severe Behaviour Response Teams, Dr Macfarlane witnessed what could happen when people living with dementia were treated with a truly person-centred approach. His view changed entirely.

“The data speaks for itself. DSA published the results of about 6,000 cases where non-drug strategies were implemented, and the average reduction in behaviours were between 60–70%. If you look at the studies analysing the results of medication trials, antipsychotics in particular, the decrease in behaviours was only 8%.”

He explains the best results come from getting to know the person, not just offering a cup of tea and something to eat once a person is already distressed, which he states can sometimes make things worse because the person feels “fobbed off”.

“The best way to manage any behaviour is by preventing it. If you’re aware of the triggers and the sorts of vulnerabilities people might have, if you can avoid those triggers, it’s much easier than trying to manage a behaviour once it has started.

“The person could be in pain, they might be bored, overstimulated, lonely, socially isolated, or it could be the carer approach. The facility might lack meaningful engagement, or be too noisy, or not homelike.”

He added that there isn’t a “one-size-fits-all” solution, and that every person living with dementia is different. The best results come from a detailed face-to-face assessment from trained staff, which is where DSA comes in.

If the facility requests, trained DSA staff can visit the person living with dementia here in the Central West, speak to them, observe them, and provide a report with recommendations to the facility. Of course, in order to be effective, the report needs to be distributed among staff and implemented – which he states “unfortunately doesn’t always happen”.

But the more the community is informed, the more we, the families of people living with dementia, can ask the right questions so that we can better advocate for our loved ones.

“In circumstances where a doctor says to a family: I want to put your relative on an antipsychotic, the question should be: ‘What else has been tried? What other professional services have you engaged?’

“I think the community needs to know that drugs are not the answer to this problem, and that best practice management of BPSD is individualised non-drug approaches.”