Community based services are failing to fully meet the needs of people with dementia and their carers, a West Australian study has found.
The study, published in the current issue of the Australasian Journal on Ageing, says 70 per cent of the 354,000 Australians with dementia were living in the community in 2016, relying on 200,000 informal carers.
In most cases the carer was a partner, spouse, son or daughter who provided 40 or more hours of care a week.
However, the needs of spousal carers and people with dementia were “beyond the current scope of available formal support services”, lead researcher Claire Morrisby from Curtin University writes.
Frustration and salvation
Morrisby interviewed and held focus groups with ten people with dementia and their carers who were receiving community services from a provider.
It found people with dementia and their carers accessed services to improve quality of life and help the person with dementia stay at home longer.
However, “community services were a frequent cause of both frustration and salvation among participants,” she writes.
“In general, participants were grateful for the support they received, however, they recognised serious downfalls in institutional supports.”
These included a failure to meet expectations for quality, relationship-based care, a finding consistent with previous studies, she wrote.
Service providers failing to meet needs
“The research found that in the community, at the time of the study, there were a variety of needs that weren’t being met,” Morrisby told Community Care Review.
“It was quite clear that the assessment processes and the way that services were communicating about was available wasn’t really meeting the needs of people.”
Services didn’t take time to consider how spousal carers were interacting with them, she found.
“The difficulties that many of the carers expressed was that they were in some ways ignored during the assessment process, and they felt that their experience as a carer was not understood or accounted for during that care planning process or assessment,” she said.
Morrisby says the way services are provided in Australia, as in many other countries around the world, is based on a presumption that a spouse or family member will take on the burden of care, with services viewed as a “stopgap”.
“If we don’t have that support, people with dementia, and often older people in general, will enter care much sooner,” she says.
“There’s a need for the family carer to be considered much more carefully and there needs to be a greater level of consultation, particularly with a spousal carer.”
Impact of consumer directed care
Morrisby adds the study was small and the findings cannot necessarily be generalised across the board, and follow-up with families in the study suggests that the shift to consumer directed care may have addressed some of the concerns. She hopes to pursue this in further research.
However, she also notes move to consumer directed care has put more responsibility on the carer to choose the “right” level of support, potentially creating conflict.
“That was an issue that came up in the interviews,´ she told Community Care Review.
“They struggled to cope with the person with dementia’s insight into their condition, (the person with dementia) is often struggling to accept services and when the care planning process falls to the family carer, that conversation becomes much more difficult,”
Dr Kaele Stokes, Executive Director Policy and Research at dementia Australia said as the number of people living with dementia increase will be added pressure on the health care, disability and ageing systems.
“We know that around 70 per cent of people living with dementia live in the community, so having increased supports and services both for the person living with dementia themselves, and also for their families and carers, will be really important in order to maintain them in their own homes,” she told Community Care Review.