The project ‘Widening choices for people with dementia’ marks a new interdisciplinary collaboration between research centres at University of Edinburgh and Heriot-Watt University. It addresses an emerging situation affecting people with dementia who, mainly due to policy developments such as Scotland’s National Dementia Strategy, have received an early diagnosis of dementia and have now been living with dementia for 5 plus years. Some of these people have coined the phrase ‘the new dementia’ because their experience defies dominant medical understandings of the middle stage of dementia. People in this group continue to lead active lives, and, while they do need support and may not be able to stay at home much longer, are not ready to move to institutional-like care homes.
The Alumni, a group of experienced dementia activists who have all been living with dementia for 5 plus years, are all grappling with this new situation. On a recent study trip to Australia, Agnes Houston, a member of the Alumni Group, was inspired by new possibilities she saw at a dementia village called Hammondville, run by HammondCare. On a study trip to Japan, several of the project team also saw group homes where people with dementia are treated not so much as care recipients, but as citizens. Both visits have stimulated discussion about what might be possible in Scotland.
The project aims to support people with dementia, policy makers and other stakeholders in Scotland to learn from other places about alternative housing-with-care models, through a series of co-produced films, face to face workshops and targeted briefing papers. Adopting a coproduction model of working, and drawing on theories of citizenship (Bartlett & O’Connor, 2010), our proposed work will challenge a traditional academic research approach by ensuring that the views and experiences of people with dementia are central in the sharing and development of knowledge. Participants will be engaged in considering examples from other countries, sharing these approaches among key stakeholders, and together, developing a brief which identifies ways Scotland can advance and take on the positive, applicable aspects of these models.