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  • Professor Elizabeth Beattie found dementia's unpaid carers suffered from high rates of depression.

Dementia’s unpaid carers must not be forgotten

28 June 2012

Unpaid dementia carers are saving taxpayers millions of dollars, but their mental and physical health is suffering and they need more support, researchers at Queensland University of Technology (QUT) found.

Researchers from QUT's Dementia Collaborative Research Centre: Carers and Consumers have announced the results of a study which investigated one of the most important supports for unpaid carers, respite care.

Study co-leaders Professor Elizabeth Beattie and Dr Elaine Fielding from the QUT Dementia Collaborative Research Centre said the project interviewed over 330 carers of people with dementia from across Australia.

Professor Beattie said the study found there was a high need for government-funded respite care, which provided temporary care for people with dementia, allowing their primary carers to have a break, attend to other needs, or socialise.

"Unpaid family carers, usually either spouses or adult children, provide the majority of care for people with dementia living in the community," she said.

"Caring for someone with dementia can be challenging and time-consuming, and rates of depression and burden are high in carers.

"Sixty percent of the carers in the survey reported receiving no regular help from family and friends in their caring role and less than one-third of the carers felt that they had someone they could call on to care for the person with dementia for a few days if something unexpected occurred."

Professor Beattie said while there were about 270,000 people with dementia in Australia today, this figure was expected to grow to over 980,000 by 2050.

"The cost of care of people with dementia forms a significant portion of the Federal Government's health budget, and this cost will continue to grow as the population ages over the next 50 years," she said.

"Continuing to care for people with dementia in the community with family carers, rather than in residential facilities, entails considerably lower costs and is generally preferred by people with dementia and their carers."

Dr Fielding said while the current system of government-funded respite care was working well for many carers, other carers experienced significant barriers to accessing respite care, such as financial hardship or refusal on the part of the person with dementia or the respite provider.

"The study found carers who used in-home or care centre respite services regularly were for the most part, quite satisfied with them," Dr Fielding said.

"However, residential respite care was more problematic. Waiting lists were sometimes prohibitively long and the quality of the care was sometimes lacking in the carers' opinion.

"Most refusals of respite requests were due to availability issues or to the physical or behavioural care needs of the person with dementia. For example, some carers reported that respite services refused to accept their relative because of incontinence or aggression."

The researchers said the study backed-up and recommended further inclusions into the federal government aged care Living Longer. Living Better. reforms announced earlier this year.

Policy recommendations stemming from the study include:
- Increasing the amount and flexibility of respite services.
- Improving dementia-specific training to respite care staff.
- Streamlining the referral pathways, since many carers had difficulty finding out about respite care services.

Additional co-investigators on this study were Associate Professor Christine Neville (University of Queensland) and Ms Meredith Gresham (HammondCare).

Related story:
Caring for the carers of dementia sufferers

Media contacts:
- Rachael Wilson, QUT media unit, 07 3138 9449 or media@qut.edu.au (Wed/Thu)
- Rose Trapnell, team leader, QUT media unit, 07 3138 2361 or rose.trapnell@qut.edu.au