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Context: Scotland needed to develop a new dementia strategy with lived experience at its heart from the start, ensuring policy reflected the complex realities of living with dementia.
Approach: Established a formal National Dementia Lived Experience Panel as part of governance structures, using PANEL principles to guide engagement.
Implementation:
- Equal membership of people living with dementia and care partners (22 members total)
- Voluntary, unpaid membership with expenses and access support covered
- Flexible application methods (email, voice note, video, phone call)
- Independent recruitment group ensuring transparency
- Regular meetings (mix of virtual and in-person) with structured input into strategy development
Impact:
- Key themes from Panel directly shaped Everyone’s Story dementia strategy
- Minister commitment to anti-stigma campaign following Parliament meeting
- Panel now embedded in Strategy Delivery Group governance
- Continuing evolution to address diversity gaps and separate voices for people with dementia vs care partners
Key Learning:
- Clarity about purpose and parameters essential from start
- Need dedicated administrative support and flexible booking systems
- Single point of contact crucial for trust and practical arrangements
- Buy-in across organisation essential for credibility and resources
- Lived experience engagement can challenge traditional ways of working – openness to “not always being in control” important
- Additional efforts needed to actively engage women and minority communities
- Only small minority may engage with government – need broader community engagement approaches