Last week (19-25 September) was Dementia Action Week. Dementia impacts close to half a million Australians and almost 1.6 million Australians are involved in their care. I’m proud to working with Dementia Australia on an evaluation of their new Peer to Peer support program.
Dementia Australia is the peak national body and charity for people, of all ages, with all forms of dementia, their families and carers. The organisation has received funding from the Commonwealth Department of Health to establish a one-to-one support program for people with dementia and people caring for a loved one living with dementia. I am benchmarking the program against other non-profit organisations delivering peer support programs for life limiting, chronic, or terminal illnesses. I’m also tracking and assessing the internal workings of the pilot program to ensure it has the right structures in place to continue serving its community well as it rolls out.
Dementia Australia’s Peer to Peer Support Program has been designed according to best practice framework in peer support, within an ‘empowerment model of care’ framework. In recent years, this framework has been developed as a way of introducing peer support as an additional form of care. Peer support is when people who are living with the same or similar illnesses share their time and experiences with each other to offer hope, encouragement, self-management strategies and a positive role model. The word ‘peer’ is important because it means ‘equals’. It is different from the vital care provided by medical and allied health professionals. It can be especially useful for people who are newly diagnosed and/or coming to terms with a life-long condition.
Dementia Action week was developed in consultation with dementia advocates as a way of addressing widespread discrimination towards people with dementia. The campaign provided tips to encourage Australians to increase their understanding of dementia. More information about dementia generally, and how to participate in the Peer to Peer support program can be found here.
Features of a good peer support program
The following key features are important in good peer support programs:
1. Flexibility: The program responds to participant needs and preferences;
2. User-led: It is steered by people with lived experience of the condition;
3. Focus on capacity-building: It should include training and support to build confidence and knowledge;
4. Facilitated through a community organisation: The program should be linked to a community organisation that support peers leaders in their work;
5. Semi-structured and purposeful: It should include a mix of issue and information-based information that is both structured and flexible; and
6. Community-based: The initiative should focus on forging links between peer support participants and mainstream community organisations, services, business and local government.
(Source: Chronic Illness Alliance, 2018).
So far, for this evaluation, I’ve worked with Dementia Australia on the important first task of preparing a Program Logic Model to fully flesh out the internal workings of the program and the intended causal pathways to the intended short, medium and long-term outcomes. I’ve started researching the principles of good practice peer support and I’m beginning to talk with convenors of other programs for the benchmarking study. In the coming weeks and months I look forward to interviewing participants in the program to gain first hand feedback about how well the program is being rolled out to deliver on its intended outcomes and processes, as identified in the Program Logic Model.
It’s wonderful to see that Dementia Australia is increasing its profile in this way and responding to the needs of people living with dementia, and their carers.