By Stephen Easton
Carers who look after a family member with dementia can help to improve the quality and accessibility of respite care services in Australia by completing an online survey for a current research project.
The survey collects the experiences of carers who look after a family member living with dementia in the community, not residential care. To be eligible, participants must be at least 18 years old and see the person with dementia at least three times a week. They do not need to have ever taken advantage of a respite service, as the researchers are just as interested in why a person would choose not to take advatange of one.
The study is being undertaken at the Dementia Collaborative Research Centre: Carers and Consumers at the Queensland University of Technology, led by the centre’s director, Professor Elizabeth Beattie. Other team members are project director Dr Elaine Fielding, also from the DCRC, Dr Christine Neville from the University of Queensland, and Meredith Gresham, head of research at dementia care provider Hammond Care.
The survey can be completed online and according to Dr Fielding, normally takes about half an hour. Those without access to the Internet are invited to share their views in an interview over the telephone.
Dr Fielding said the team hoped to receive about 400 responses to the survey, which opened in late April and will run until at least the end of July, to make sure the results would be as meaningful as possible.
“The survey is focused on whether or not carers use respite care, what kinds they have used, how often they may have used it, whether they were satisfied with that usage and whether they had any issues with that,” she said. “If they haven’t used respite care, we want to ask why they haven’t, and if there are any changes that could be made that would allow them to use it.”
“We really want to get a large and diverse response to this. We’re trying to get the experiences of a lot of different carers from all over Australia, and all sorts of different backgrounds, because everyone has different experiences.
“Respite care does help carers a lot. We did a pilot study late last year and just from that small group of carers last year, some carers have found respite very useful in terms of continuing care – if they have respite care they are able to care for longer in the home or the person with dementia’s home.”
Dr Fielding said organisations like Alzheimer’s Australia and community aged care providers were already helping, by circulating information with their newsletters, but encouraged others providers to help as well.
“We’ve called a lot of [providers] but if there are some we haven’t talked to, we have flyers and postcards that we could mail to them and they could send out to their carers.”
About 60 per cent of people with dementia live in the community and of them, most are cared for by family but little is known about the perspective of these informal carers. The respite care study forms part of the broader work of the DCRC: Carers and Consumers in investigating the impact of dementia on the lives of the people who are diagnosed with it, their family members and their carers.
“We hope to get a picture, which isn’t currently available, of what the carer’s perspective of respite care is in Australia,” Dr Fielding said.
“There’s a lot of different types of respite care and we’ve tried to cover all of it – when we’re done we’ll be making policy recommendations to improve the quality [of] and access to respite care – with the ultimate purpose of making carers’ lives better and allowing the person with dementia to stay at home longer, as opposed to going into residential care.”
Dr Fielding said the study is likely to be completed by the end of this year.
Click here for the online survey or for more information, email Dr Elaine Fielding or phone her on (07) 3138 3879.
I am a full time carer of my wife Rosemary diagnosed with Alzheimers (Assessed as high dependency) several years ago.
Unfortunately, for me, Rosemary is highly dependent on me such that I can scarcely be out of her site without she becomes stressed.
The result of this situation is that I can only avail respite to a very limited extent.I have three children who would assist me if they were able to but work and distance are major obstacles.
I am fully aware of the need for me to take advantage of any opportunity to use respite but find it very difficult to side step my wife’s clinging nature. We are now in our 57th. year of married life together.