Launch of new resources helps people with dementia and carers ‘Rethink Respite’
Caring for a person with dementia can be physically, mentally and emotionally challenging, yet a large proportion of carers currently do not access respite services.
There are a number of barriers to using respite, but some carers may not know about local services or may feel guilty about having their loved one cared for by someone else.
To address this, an innovative project to support carers and people living with dementia, ‘Rethink Respite’ has been launched by the University of Wollongong (UOW).
The project was funded by an Dementia Australia Dementia Research Foundation grant and has engaged carers, people living with dementia, local service providers and academics from Wollongong and Queensland universities.
As part of the project, Rethink Respite Coaching will be provided with tailored support for people living with dementia. Carers will learn more about local respite services and strategies and use respite to achieve personal goals.
Project leader, Dr Lyn Phillipson from the University of Wollongong, said there was plenty of evidence to show that respite could sustain carers to continue in their caring role and keep the person with dementia at home for longer, but the proportion of carers that used available respite and other support programs was low.
Dementia carer support group leader Val Fell with Associate Professor Helen Hasan and Dr Lyn Phillipson. Photo by Paul Jones.
“Respite should be affordable, reliable, flexible and tailored to meet the needs of people with dementia and their carers. It should be incorporated in the early stages of caring and as part of an ongoing plan for support and assistance,” Dr Phillipson said.
“There are lots of misconceptions about respite, such as it being a last resort, or an avoidance of duty or responsibility. We want to challenge those myths and encourage carers to ‘Rethink Respite’.
“We want carers to know what is available and understand the benefits of respite for themselves and the person living with dementia.”
A new website, www.rethinkrespite.com, provides a wealth of resources for carers and people with dementia including a decision guide and a directory of services. There are also resources for service providers and health professionals.
Information systems, knowledge management and human computer interaction expert, Associate Professor Helen Hasan from the Australian Health Services Research Institute, said Rethink Respite was tested with local carers. Their feedback was used to refine and ensure the site met the needs of the different audiences, such as carers of people with younger onset dementia.
Support Group Leader for the Corrimal Dementia Carers, Mrs Val Fell, said she often receives calls from carers who are unsure about how to access respite and what is available.
Dementia carer support group leader Val Fell with Dr Lyn Phillipson and Associate Professor Helen Hasan. Photo by Paul Jones.
“It is wonderful that I can now direct them to this website or the coaching program which would help them connect to local services and provides other respite strategies like attending a carer support group or using carer counselling,” Mrs Fell said.
Rethink Respite activities include information sessions for Primary Health Care Nurses and local carer support groups and service provider workshops.
Rethink Respite is supported by the Dementia Australia Dementia Research Foundation via the Resthaven Incorporated Dementia Research Award, which was awarded to Dr Lyn Phillipson in 2014.