Active Voice is Alzheimer Scotland’s national involvement programme, bringing together people with lived experience of dementia to help shape change in policy, practice, and communities. Through the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN), people affected by dementia shared their insights and priorities, ensuring that decisions at local and national levels reflect what matters to people living with dementia and their families.
Across Scotland, people living with dementia and carers are telling a remarkably consistent story about what works, what doesn’t, and what urgently needs to change. This year, members of the SDWG and NDCAN, working alongside the Active Voice team and local Alzheimer Scotland services, brought together the views shared at eight “Have Your Say” events. What they heard offers a powerful lived‑experience picture of dementia care across Scotland – and a clear call for action.
Have Your Say events create a safe, supportive space for people to speak openly about their experiences of dementia care and support in their local area. Conversations are informal but focused, exploring what is working well, where people are struggling, and what would make the most difference to everyday life.
Across the programme, 88 people took part: 53 carers and 35 people living with dementia. Participants spoke about stigma, diagnosis, post diagnostic support, respite, care at home, GP services, hospital experiences and discharge planning. People described a dementia care pathway that can be supportive where community connections are strong – but exhausting where diagnosis is delayed, post diagnostic support ends too soon, respite is difficult to access, and coordination breaks down.
The experiences shared closely align with Alzheimer Scotland’s Dementia Care Pathway Guarantees. They show why consistent national delivery matters and how delays and variation affect quality of life:
• In the Early Stage, delays to diagnosis were common, with some families waiting years. Once diagnosed, people wanted post diagnostic support to begin promptly and last long enough to make a real difference. Alzheimer Scotland resource centres were consistently praised for their support, reassurance and guidance.
• In the Moderate Stage, families described fragmentation, lack of a named care coordinator, inconsistent GP reviews, difficulty accessing respite, and barriers to therapeutic day services.
• In the Advanced Stage, concerns focused on poor hospital discharge, delayed discharge, and difficulty accessing skilled, reliable care at home and specialist services.
The voices shared present a clear and consistent picture across Scotland. When care is timely, coordinated and person centred, people feel supported. When it is not, families are left struggling. Delivering the Dementia Care Pathway Guarantees consistently would reduce inequality and improve quality of life for everyone affected by dementia.
Read the Full Report here: https://www.alzscot.org/wp-content/uploads/2026/04/AV-Have-your-say-2026-Full-Report.pdf
