New research to study role of providers in living well with dementia

Forthcoming research will examine what allows people with dementia to continue to live well, and within that, the role that service providers play in their quality of life.

Forthcoming research will examine what allows people with dementia to continue to live well, and within that, the role that service providers play in their quality of life.

Alzheimer’s Australia NSW will collaborate with Southern Cross Care NSW & ACT and Catholic Healthcare to ask people with dementia and their carers about their experiences living with dementia, as well as their wants and needs, via a combination of focus groups, interviews and surveys.

The findings will be used to determine what is needed to improve the quality of life for people with dementia in terms of policy, resources, and cultural change.

John Watkins, chief executive officer of Alzheimer’s Australia NSW, told Australian Ageing Agenda that the peak body had noticed for some time there were differences between people’s ability to live well with dementia, and the research was motivated to understand why that was.

John Watkins
John Watkins

Mr Watkins said he expected that some people coped well with dementia due to their personality and the strength of their relationships with family and friends. However, he predicted a lot could also be attributed to the quality of service delivery experienced within aged care. He hoped the research would provide lessons for the industry around best-practice and including the voices of people with dementia in their care.

“If some can have a positive experience that is supportive and beneficial, respectful of their personality, their dignity and individuality, let’s see if we can replicate that. Let’s see if we can draw lessons, and see whether or not we can ensure that other people have that same experience,” he said.

A person-centred approach to care was likely to be beneficial in living well with dementia, he said. However, he was also interested to see what impact things such as a provider’s relationship with family, spiritual care or even the ability to exercise had on the quality of people’s lives.

Reframing the debate

Mr Watkins said that in the past, he found that when speaking publicly about dementia, he often stressed the negative, something he is now more careful about.

“Somehow I’ve felt that I’m not doing justice to the human experience that I see. So part of what we’re trying to do [with this research] is rebalance that debate,” he said.

Mr Watkins said he hoped that when the results of the study were released, he would be able to relay an important message to those with dementia and their families that while a dementia diagnosis was daunting and often difficult, it was not a cause for despair.

“You need to highlight the negative, in a way, if you’re going to bring about change, but there is another side to this whole debate and we can’t ignore it; there is overwhelming evidence that there are people with dementia who continue to live happy and fulfilled lives. That’s a truth that needs to be told,” he said.

“Yes it’s challenging, yes it’s tough, but there is hope.”

Findings will be reported in a discussion paper, set to be released in August 2016, which will include recommendations for government, service providers and the broader community.

Recruitment for participants will begin in 2016. For further information contact Marija Stupar on 02 8875 4621 or marija.stupar@alzheimers.org.au

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Tags: alzheimers-australia-nsw, catholic-healthcare, dementia, dementia-aged-care, john-watkins, southern-cross-care,

1 thought on “New research to study role of providers in living well with dementia

  1. In our national consultations with people with younger onset dementia on behalf of the Australian Government, a key message was the importance of continuing to be able to participate in things that are meaningful and purposeful – not dissimilar to the rest of us, really – whether we are young, old, have a disability, cognitive impairment …. You can read more of what people told us in the final report at http://ahsri.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow176495.pdf

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