Above: Dr Elaine Fielding.
By Stephen Easton
Researchers studying the impact of dementia on carers and consumers have released a five-point plan to improve respite services, based on a national survey of carers.
The results have been sent to the Minister for Ageing, Mark Butler, along with five policy recommendations that closely match commitments made by the Gillard government in the recently announced aged care reform package, Living Longer. Living Better (LLLB).
The researchers from the Dementia Collaborative Research Centre – Carers and Consumers (DCRC-CC), which is led by Professor Elizabeth Beattie at the Queensland University of Technology (QUT), say more respite services are needed for people with dementia, and that they need to be more flexible.
Study leader, Dr Elaine Fielding, said there were a large number of ‘satisfied customers’ among the carers surveyed. But, she said, they would still like to see more respite services, in a range of different types, with a more ‘consumer-oriented’ approach.
The new survey reinforces the need to fund innovative models of respite – another aim of the LLLB reforms – beyond “traditional” options like longer-term stays in residential care facilities, usually with a minimum of two weeks.
“The ones they really liked were the services with a more home-like environment,” Dr Fielding said. “So [they would like] a much smaller environment, without the ‘institutional’ setting.”
“…Some of those cottage-style ones have the carer go in with them. The carer may go and do activities with other carers during the day so they get support and activities in that way, and the person with dementia also has activities to do.”
Dr Fielding said that some carers found it convenient to book two or three weeks of respite a long way in advance, at the start of each year. But many others found shorter periods more helpful.
Other recommendations that “dovetail” with the reform package include: standardise access to respite across different regions; improve dementia-specific training for staff involved in the provision of respite care; and ‘streamline referral pathways’ to make the system easier and simpler for carers to access.
In some parts of the country, survey respondents were very happy with the respite services available, including their capacity to manage the more complex behavioural and physical symptoms of advanced dementia.
But outside of major cities, carers find respite services difficult to access as they are often located far away. In other areas, carers are being turned away by government-funded respite services unable to provide an appropriate level of dementia care, leaving carers to turn to more expensive private-sector providers, family members, or simply go without respite.
In some cases, respite care providers even cited incontinence as a reason to refuse taking on a client – a common issue for many frail elderly people, not just those with dementia.
Occasional respite care costs taxpayers less than having the person with dementia live in residential aged care and is also preferable to most carers and care recipients. Some carers expressed frustration at not being able to continue caring at home after being refused respite when the care needs of the person they were looking after increased.
“When these carers needed more help, they were refused, and that was one of the things we found most troubling in our results. So that’s a place where hopefully the government can come in with some kind of respite that covers the higher physical or behavioural needs,” Dr Fielding said.
“Sometimes it’s an issue of aggression. The respite places say, ‘We can’t have that person with dementia here because they were aggressive to other people.’ But that’s a carer who is struggling and really needs some time off.”
The DCRC-CC did not survey the views of respite care providers, Dr Fielding added, although consumers often reported being told that service restrictions were due to funding limitations.
While the group of carers surveyed was very large, Dr Fielding stressed that it was biased towards people who had already been in contact with support services as a result of the way carers were recruited to answer the questionnaire.
Others get by with no formal support at all and according to Dr Fielding’s previous research, generally experience a greater ‘carer burden’, putting them at higher risk of health problems of their own such as depression.
