A new national guide to respite services for carers of people with dementia has been launched to support carers to be informed and make decisions about respite by drawing on the powerful stories of other informal carers.
The first of its kind in Australia, the resource, Getting the most out of Respite Care: A guide for carers of people with dementia, has been written for carers by carers.
“The stories featured in the guide are very real and personal; told from the perspective of husbands, wives, sons and daughters,” said Dr Maria O’Reilly, a research fellow in the Dementia Collaborative Research Centre for Carers and Consumers (DCRC:CC), based at Queensland University Technology.
She said the guide was designed to help carers make the decision to use respite. “They can read about the experiences of others in their situation and ideally this will aid them with what can be a difficult step to take.”
Vince O’Rourke, a carer for his first wife who died from Alzheimer’s disease, welcomed the new guide and said reading about the experiences of other carers would be invaluable.
“In six years of caring I had just three days off. I think carers are some of the worst at taking advice as they are focussed on looking after their loved one,” said Mr O’Rourke, who now runs Carers Outlook on acreage in the Sunshine Coast hinterland as a respite centre for carers to take a break.
“Carers often believe no-one else can look after a person as well as they can but you need to be able to relinquish some control and put your trust in others,” he said.
“The most important aspect of this guide is that it is largely put together with the stories of other carers. Academics and medical professionals can make statements but we find that carers are more likely to listen and take advice from people that have walked that hard road themselves.”
The guide drew on the findings from a survey of 300 carers and with input from the Alzheimer’s Australia’s Consumer Dementia Research Network.
The guidebook is made up of carers’ stories and case studies, as well as carers’ top tips and service information.
Download a copy of the resource from the DCRC:CC or contact 07 3138 3847.