When it comes to quality in dementia care, Trevor Crosby expects a level of care that values his autonomy.
For now, Trevor’s taking life “one golf game at a time,” but fears that as his diagnosis of dementia progresses, that autonomy will be gradually taken away from him.
Trevor’s wife Jill has taken on much of the caring role following his diagnosis of early onset Lewy Body disease 18 months ago.
“I think initially when you’re diagnosed the shock and the horror of the whole event really bowls you and you don’t know where you’re going,” Trevor said.
“We stuck together and worked something out, we’ll take the matter into our own hands, develop strategies that would work to lift and maintain quality of life.”
“My quality of life is excellent, the activities mainly around sport. Yoga is an amazing activity that can really help my head, my body and just my general demeanour.”
The issue of control was a recurring theme at the Dementia Australia Dementia Research Foundation Quality of Dementia Care forum held at the National Library of Australia on World Alzheimer’s Day 21 September.
Presented by Dr Norman Swan, ABC Radio National's Health Report host, the panellists included Dementia Australia Dementia Advisory Committee Member Mr Trevor Crosby; Director Mayo Alzheimer's Disease Research Centre and the Mayo Clinic Study on Aging Dr Ron Petersen; Geriatrician and Director Cognitive Decline Partnership Centre Professor Susan Kurrle; Director Dementia Collaborative Research Centre – Carers and Consumers Professor Elizabeth Beattie; KinCare COO Ms Therese Adami and Dementia Australia National Interim CEO Ms Maree McCabe.
“I think that all of us in our own lives want to direct our own lives and have a level of autonomy and comfort with where we’re going,” Professor Beattie said.
Dr Swan asked Dr Petersen about the US example where giving control to people was largely the exception not the norm. Dr Petersen said that attitude was shifting.
“In the US there is an institute, PCORI, Patient-Centered Outcomes Research Institute and it was established through the Affordable Care Act. We now have a grant to look at this aspect of care and have the patients themselves, participants in a research setting, involved in the design of the research study and measuring the outcomes,” Dr Petersen said.
“We have a PPRN, which is Patient Powered Research Network, we’ve inserted the letter ‘C’ in there for Patient and Caregiver Research Powered Network. We’re trying to incorporate now the values, the desires of not only the patients but the carers as well into the research setting.
“I think as research into Alzheimer’s disease moves back toward the milder end of the spectrum, so people who are only minimally impaired, maybe mild cognitive impairment or even clinically normal this becomes increasingly important because the measures you have as to whether say your intervention is working really comes subjectively from the patients themselves and from their caregivers.
“I don’t think we’ve taken this into account adequately, in either our approach to patients or our approach to research studies, I look forward to getting the feedback from the carers.”
Professor Sue Kurrle said the Cognitive Decline Partnership Centre was fortunate to start with the consumers through the partnership with Dementia Australia.
“Consumers were telling us what they wanted to know, it’s been a real eye-opener and not always what the researchers wanted but if you don’t start with the end users you can’t get your research into practice,” Professor Kurrle said.
Professor Kurrle said consumers wanted information around quality of care, how it’s measured, cost of care, regulations and advanced care planning.
Dementia Australia National Interim CEO Maree McCabe said regulations were important and had their place, but it was important not to become so risk adverse that regulations were imposed which took away a person’s freedom or thwarted innovation.
KinCare COO Therese Adami spoke about consumer choice and as the model of care moves towards a consumer-centred model of care consumers were able to vote with their feet and move to a different service provider if they were unhappy with the care provided.
The conversation covered standards of care and with 99 per cent of care homes meeting the standards Dr Swan asked if the standards were too easy.
The extreme between the levels of quality in care and those who can afford the best quality of care compared to those who can’t afford to pay for better care was discussed and the elephant in the room, staff training and pay, addressed.
“If we don’t get out there and try and change it then we’re also to blame. So how do you change it? You speak to the regulatory authorities and you make complaints. It is difficult but I think we all have to work towards that,” Professor Kurrle said.
“You ask ‘What’s quality of care?’ It’s what would we want, if we were in that situation. That’s what it keeps coming back to as I get closer to that age. What do I want when I need that sort of care?
“I’m not happy necessarily with the sort of care my parents are getting, but at the moment there’s not huge choices - unless you’ve got quite a lot of money.“