Alzheimer’s Australia Dementia Research Foundation, Resthaven Inc. Dementia Research Award
Duration: January 2015 – January 2017
Provision of respite is consistently identified by carers of People Living with Dementia (PLD) as one of their critical unmet care needs, yet only a small proportion use available respite and other support programs. ReThink Respite was a community intervention which aimed to improve knowledge about, attitudes toward, and uptake of, respite services for PLD and their carers, in the Illawarra-Shoalhaven community. The intervention provided education sessions as well as informational and navigational resources for PLD and their carers, respite service providers, and those promoting access to respite services throughout the Illawarra and Shoalhaven. Individualised support for PLD and their carers was offered via ‘ReThink Respite Coaching’, a goal orientated program developed specifically for the project and delivered by health professionals in the participants’ homes.
What we did
The project evaluation comprised a pre/post survey of carers of PLD living in the Illawarra and Shoalhaven regions. The baseline survey was conducted with 84 carers in 2015 and the follow-up completed by 44 of the 52 carers who were still eligible in 2016. Results demonstrate there is still an unmet need for respite for PLD and their carers in the Illawarra and Shoalhaven regions. All participants continued to consider general practitioners, carer support groups and family and friends as major sources of information about respite. However, coaching participants increased the number of sources they used to find information about respite. This increase was largely due to using the ReThink Respite website and Directory of Services. Carers participating in the coaching had many positive improvements in knowledge, attitudes and intention to use respite. They also improved self-efficacy and personal gain during the intervention period. This was not the experience for non-coaching survey participants, some of whom showed signs of worsening during the period of the intervention. This demonstrates the benefits of one-on-one support to gain the confidence and skills needed to successfully navigate the aged care system.
The ReThink Respite project took part during a transition period of aged care reforms in Australia. This, and the progressive nature of dementia as a condition, will have impacted on participants in the study and may account for the negative trends found for respondents in the survey who did not participate in the coaching program.
Resources were distributed through a customised ReThink Respite website (http://rethinkrespite.dementiaillawarra.com/), which is a companion to the Dementia Illawarra website (http://dementiaillawarra.com/).