Improving respite for carers of people living with dementia

University of Wollongong researchers from the Centre for Health Initiatives are calling for carers of people living with dementia to take part in a study looking at how respite services for carers can be improved.

Dementia is a growing issue, with the number of cases in Australia expected to increase by 166% by 2031 due to the ageing population. Because dementia is a syndrome associated with memory loss, severe levels of disability and behavioural problems, the job of caring for loved ones or family members with dementia is very challenging.

Previous studies with caregivers reveal that they often have low levels of life satisfaction and high levels of anxiety and depression. Formal ‘respite’ services, which can assist carers by giving them a break or by decreasing caregiver hours, are available through government and community organisations but according to Lyn Phillipson from CHI, the use of these services is often low.

"Unfortunately, it is apparent that there are currently some real barriers to carers of people living with dementia accessing the help they need, particularly their need for respite services," Ms Phillipson said.

"My concern is that many carers have made attempts to access help and support to assist them in their caring responsibilities, but many have not been successful in accessing the help they need."

Ms Phillipson and other researchers from CHI will be conducting a series of discussion groups to talk to carers about their needs and past experiences of respite services.

"I am particularly interested in what carers have found helpful or unhelpful, and how we could make respite services better," she said.

"We believe carers are the best people to help us understand what makes it difficult or easy to use respite services and how to best provide the information and support they need in their role."

The research team is looking for people involved in caring for someone living with dementia in the community (i.e. not in residential care like a nursing home or hostel). Those interested in participating – even if they haven’t ever used respite services before – can contact the University.

(Source: University of Wollongong: April 2009)