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 last week 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, which involved interviewing more than 330 carers of people with dementia from across Australia, revealed there was a “high need” for government-funded respite care.
Professor Beattie claimed unpaid family carers, usually either spouses or adult children, provide the majority of care for people with dementia living in the community.
“Caring for someone with dementia can be challenging and time-consuming, and rates of depression and burden are high in carers,” she said.
About 60% 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 they had someone they could call on to care for the person with dementia for a few days if something unexpected occurred.
“The cost of caring for 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,” Professor Beattie claimed.
“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.”
Fellow researcher, Dr Fielding, told DPS News 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.
“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 respite services refused to accept their relative because of incontinence or aggression.”
The researchers said the study backedup and recommended further inclusions into the federal government’s Living Longer, Living Better aged care reforms announced earlier this year.
Some of the policy recommendations stemming from the study include:
- increasing the amount and flexibility of respite services;
- improving dementia-specific training to respite care staff; and
- streamlining the referral pathways, since many carers had difficulty finding out about respite care services.
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