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Respite model inflexible, carers say

A new survey has confirmed respite is an essential service for many carers, but there is much room for improvement, reports Darragh O Keeffe

Almost two out of three carers of people living with dementia have no informal support and many would not be able to continue caring were it not for the help provided by respite services, according to new research.

Of the 336 carers surveyed, 59 per cent had no support from family or friends, while just one third felt they had a relative or friend they could call for help for a few days in an emergency or if something unexpected occurred.

The research, from the Dementia Collaborative Research Centre: Carers and Consumers at Queensland University of Technology, found high rates (77 per cent) of use of formal respite among carers of people living with dementia. (However, the researchers point out one of the sources for recruiting participants was the Commonwealth Respite and Carelink Centres and this may go some way to explaining the figure, which is higher than previous studies.)

The research found the carers were generally grateful for the respite services they received, with 85 per cent satisfied or very satisfied. Over 90 per cent wanted to continue using the respite.

However, the research found there were several shortcomings of current services across Australia – for instance, 17 per cent of carers had been refused some type of respite for reasons such as being over their annual limit or the lack of dementia-specific places.

Other barriers to accessing services cited include financial hardship, cultural impediments and geographic variability of services.

Dr Elaine Fielding, project director on the survey and senior research officer at the QUT DCRC, said the reasons for refusal sometimes stemmed from inflexibility on the part of providers – refusing clients because they had dementia, were incontinent or considered difficult.

For the carers who had relatives in the advanced stages of dementia or who required high levels of physical or behavioural care, being refused respite because of such need provoked anxiety and increased burden, the survey found.

As a result, one recommendation was to develop innovative models that would enable respite services to cater for people with higher levels of need, as it is those people who need it most, Fielding said.

Traditional residential respite care generated the most complaints from the carers surveyed.

Similarly, when asked to gauge how satisfied the person with dementia was with the respite care, carers rated residential respite lower than in-home or respite centre care, said Fielding.

The survey’s findings note that carers who had experienced alternative models of respite, such as “cottage style” and more informal centres, were more positive about their experience and that of their relative with dementia.

The research also called for standardised access to respite across the regions, having found “substantial variability in levels of access to respite across states, regions and between urban and remote areas of Australia”.

Some carers also expressed concern about the lack of dementia-specific training among care workers.

The study, Respite Care in Dementia: Carer Perspectives was led by Professor Elizabeth Beattie, director of the DCRC at QUT. Other researchers included Associate Professor Christine Neville of the University of Queensland and Meredith Gresham of HammondCare. It was funded by the DCRC.

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