Approximately 472,000 people in Australia, including 120,900 people in Victoria, are living with dementia (Dementia Australia/NATSEM 2018)
Dementia describes a collection of symptoms caused by disorders that affect the brain. There are many different types of dementia. Symptoms of dementia may include confusion, difficulty with everyday tasks, and poor memory. While most people with dementia are older, not all older people get dementia. Dementia can also affect people in their 40s and 50s.
Most people living with dementia live at home in the community. People living with dementia and their carers become isolated as community venues such as shopping centres are not aware of how best to respond to their needs. Dementia-friendly communities are welcoming and inclusive of people living with dementia, as well as their families and friends, so they can continue to participate in their community and live their life with maximum independence.
A dementia friendly community approach involves people living with dementia and their carers in the design of local dementia friendly actions.
What did we do?
A group of local community members and people from local organisations collaborated and co-designed resources to support local cafes and businesses in Forest Hill Chase to become more dementia friendly. The group was jointly led by the IEPCP and Whitehorse City Council.
The aim of the group was to make Forest Hill a place where people living with dementia, and their family and friends, feel supported to participate in their community.
The group developed promotional materials, a checklist of physical changes that could be made to premises, a short dementia-friendly awareness session for retailers, simple and clear information for retail staff, and a logo so people could easily recognise participating businesses.
- An initial group of partner organisations consulted with people with dementia, carers and other community members about the important features in a dementia-friendly community, generating over 30 ideas for action.
- Local carers and people living with dementia were an important part of the work and ensured their direct experience underpinned the changes.
- A co-design approach was embedded in the way the group worked, with all group members learning and developing their skills in co-design together.
- Time was invested on building trust, rapport, and ways of working together, including using an external facilitator in the initial phases.
- Power imbalances between community and organisational members were addressed to ensure contributions were equally valued.
- The group was open to evolving and changing its approach as it developed.
- Group members had high ownership, shared tasks and attended events on behalf of the group.
Spending enough time on building rapport, trust and a positive working environment was paramount to sustained engagement. A balance needed to be struck between these aspects and the desire to start implementing project actions.
The group developed a unified identity that emphasised collective contributions and decision making and valued members’ skills and knowledge. Group members supported and encouraged each other, developing new friendships, connections, skills and knowledge.
The strength of the co-design process meant community members had strong engagement with the project and completing the next steps. While implementation was postponed due to COVID-19, the work can be resumed when interested businesses are ready to re-engage.
Community and organisational members now have co-design skills that can be used to benefit the local community. The resources developed can be adapted to support other dementia friendly community work in other locations in the future. Resources designed by the group are available on the IEPCP website for others to use in their own setting.
This work has strengthened local partnerships between carers’ organisations, council, community health, IEPCP and local businesses.
The co-design process was evaluated in 2019-20 showing a high level of satisfaction with the quality of the co-design process, a number of benefits to participants, some insights into how the process could be improved, and considerations for future co-design evaluation. Co-design can be a valuable and meaningful way to engage people with dementia and their carers to address issues of access and inclusion that people with dementia face every day in their local community. The evaluation provides useful insights for other community service practitioners to consider prior to embarking on a codesign project, and in establishing upfront evaluation.
Other partners were carers and people living with dementia, Carrington Health (now healthAbility), Uniting, Villa Maria Catholic Homes, Care3, and Home Instead Senior Care.
How did the PCP contribute to this success?
While this initiative is a great example of a strong partnership with organisations and community members, the IEPCP played an integral role in initiating and coordinating the partnership throughout. We provided an objective overview and brought a focus on primary prevention and the benefits of aiming for structural and systems change for longer term health and wellbeing outcomes. We also offered specific knowledge and capacity building skills to the partnership, such as co-design and community engagement principles and processes, and connections with external consultants when needed.