People with dementia and their Carers ‘ReThink Respite’

Researchers launch innovative project supporting carers and people living with dementia to rethink respite. 

Caring for a person with dementia can be physically, mentally and emotionally challenging. Despite this, a large proportion of carers currently do not access respite services. The barriers to using respite are numerous; carers may not know about local services or may feel guilty about having their loved one cared for by someone else.

To address this, UOW is launching an innovative project supporting carers and people living with dementia to ‘ReThink Respite’.

The project, funded by an Alzheimer’s Australia Dementia Research Foundation Grant, has engaged carers, people living with dementia and local service providers, as well as academics from Wollongong and Queensland universities.

“There is plenty of evidence to show that respite can sustain carers to continue in their caring role and keep the person with dementia at home for longer, and yet the proportion of carers that use available respite and other support programs is low,” according to project leader, Dr Lyn Phillipson.

“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.

“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,” Dr Phillipson said.

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.

“We tested the website with local carers and used their feedback to refine it and ensure it met the needs of the different audiences, such as carers of people with younger onset dementia,” an expert in information systems, knowledge management and human computer interaction, Associate Professor Helen Hasan from the Australian Health Services Research Institute, said.

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.

Support Group Leader for the Corrimal Dementia Carers, Ms Val Fell, said she often receives calls from carers who are unsure about how to access respite and what is available.

“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.”

A ReThink Respite stall with promotional and informational materials will form part of the Illawarra Memory Walk on Sunday 28 February at Stuart Park. Other ReThink Respite activities include information sessions for Primary Health Care Nurses and local carer support groups and service provider workshops.

This work is supported by the Alzheimer’s Australia Dementia Research Foundation via the Resthaven Incorporated Dementia Research Award.

(Source: University of Wollongong)