An international expert on dementia and ethics has called upon providers to rethink current perceptions of care, to campaign the government for change and to challenge themselves to do better.
Professor Julian Hughes, who is travelling around Australia on an Alzheimer’s Australia lecture tour, blamed persistent stereotypes about people living with dementia for prevailing problems with care.
He reasoned that if the stigma attached to the condition was eradicated, society would then begin to see people living with the condition as they truly are- individuals with rights, feelings, talents and interests. The standard of care would therefore improve as negative attitudes diminish.
“People need to recognise that this is a person that you can communicate with,” Professor Hughes said.
“If you have a problem [caring for a person with dementia] it might be your problem, not their problem.”
Professor Hughes explained the situation in dementia care, as he sees it now: “We know that occasionally people’s legal rights are being blatantly undermined. We know that some older people are being abused. We know that people with dementia are not involved in the decision-making process, as much as they should be, when they go into care.
Although he blames ignorance for prevailing negative attitudes, Professor Hughes also narrows it down to a lack of education, resources and time.
“Professionals don’t have time to sit down and talk to people. It is not on any particular person’s part but as a society we have been failing to recognise personhood for a person with dementia. Even in a care environment, where people are doing a reasonable job day-to-day, they may still have attitudes that are undermining to people with dementia.”
A revolution in care must take place, he said, which should start with some intrinsic questions.
“We need to challenge ourselves and use phrases like ‘Could we do things better?’ or ‘Is there something else we can do?’
“The big difficulty for providers is the business of person-centred care. It’s just a striking thing. Everyone’s heard of it. When you go and sit and observe what would count as real centred care, what you see is the opposite of person centred care. It is [often] care to make life better for the carers.
“We need to be humbled enough to ask can we do it better?”
As well internal change, external factors must work in favour of improving the state of care. The professor estimates that research funding needs to go up by “a factor of three or four” now and even more in the future. More people need also be engaged in dementia research.
He urged providers to unite as “fellow travellers” to continue to campaign for revolutionary change and to promote a greater sense of personhood for all people living with dementia.
“My message is that dementia is like all other disabilities. Once you see dementia in that right, then it is up to carers, people that work with them, and the people with dementia to make a fuss about it.”
