Going back more than 15 years, something worried Dr Al Power about how people cared about people with dementia.
As a certified geriatrician, Dr Power did “quite a bit of culture change” through his work with the elderly at residential care homes around the US and Canada.
With a full-time medical staff, he cared for hundreds of residents. “Culture change” went beyond simply more than education, it also involves changing the hierarchy, empowering the residents and those closest to them, creating flexible environments where people can meet the needs of the moment or give people more time.
“I was bothered by the way we care for people living with dementia,” says Dr Power, “in particular the use of antipsychotics”
Dr Power says that he saw a large use of antipsychotics and it was something he always resisted.
“I’ve used a lot fewer drugs than my colleagues, even way back when there wasn’t any evidence against them, because I didn’t like the way they affected people”
Though Dr Power could see that people were “quieter” he didn’t really believe that they were “happier” or “more relaxed” or “more engaged”, rather they were more sedated.
Dr Power says that he started “pushing back” about 10-15 years ago.
Of the 100 people with dementia he was caring for at the time, only 5% were getting antipsychotics – which was a lot lower than the 35-40% that was being seen worldwide at the time.
Times have changed over the past few decades and more research has been done looking at alternative models in care for people with dementia.
However there is still more improvements to be made, “I still think we are fixated too narrowly on a biomedical view of what dementia is – and I’m not saying dementia isn’t a biomedical phenomenon – but we are so intently focussed on that that we are not seeing the person, we are not understanding the person’s experience or trying to look through her eyes at all.”
Dementia Care in Australia vs the US
Dr Power, who has had multiple opportunities to travel to Australia a number of times for his work, sees a comparative difference in dementia care between Australia and the US.
“I think the US has generally been behind in dementia care mainly because between the national organisations and the federal government, there has not been a lot of credence given to care approaches that are more hands-on – a large amount of resources have been dropped into pharmaceutical research.”
“I’m not saying that it’s bad to do pharmaceutical research but I think that the priorities have been way overbalanced towards drug research as opposed to care or looking at new models.”
So in that way, Dr Power believes countries like Australia, UK and Scotland are ahead of the US.
However, as Dr Power explains, the US are ahead in terms of antipsychotic prescriptions, “we use a lot of antipsychotics in the US but they were never officially approved for use in dementia. They have a “black box” warning and it is not considered an approved therapy.”
“So even though people do it off label, there’s no foundation to do so. Whereas in Australia they were able to get a drug like risperidone approved. And that was done through developing this BPSD framework (Behavioural and Psychological Symptoms of Dementia) and saying that if you can document BPSD then you can have a reason to give an antipsychotic”.
In Australia, risperidone is listed on the Pharmaceutical Benefits Scheme (PBS) to treat behavioural disturbance in people with dementia at a subsidised cost. It has been shown to provide modest improvements in some people in symptoms such as aggression, agitation and psychosis.
“In that way, Australia are behind the US – we’ve already dropped antipsychotics from 24% to 16% in five years and I think Australia has a lot of catching up to do there.”
But when comparing the aged care home models between Australia and the US, Dr Power believes Australians are doing it better.
“We still tend to ‘warehouse’ in huge homes – these were the places I worked. We do things like “double rooms”, around two thirds of people in the US are in a double room, or worse occasional ‘triple’ or ‘quad rooms’”.
“I think that’s still not done much in Australia, it’s unheard of in many countries. I’ve travelled to some countries, particularly Europe and when I talk about ‘double rooms’ they look at me like ‘what are you talking about?’ ‘why would you put somebody in a room with somebody else?’”
“That may not be the same in all cultures – I’ve been to places like Singapore where there is a more communal society. So they have rooms where there are 4 or 5 people living in a large room with beds across the room from each other. And maybe culturally that is more acceptable.”
That said, the concept of shared rooms for seniors is an individual preference and is entirely up to the resident and their family.