Centring the lived experience of dementia within policy, practice, and community development
Centring the lived experience of dementia within policy, practice and community development (ENACT-DEM project) is an ESRC-funded international research project led by a team at the University of Stirling in collaboration with a team in London, Canada and Germany. ENACT-DEM brings various opportunities for greater collaboration and understanding of ageing and dementia in a Western global context.
The project aims to understand how people living with dementia, individually, within their networks and neighbourhoods, overcome exclusion and participate in their communities. The project goal is to understand the benefits, challenges, and outcomes for people living with dementia and unpaid carers’ participation in community development and the policy and practice that supports it. The team want to understand the role of communities and, in particular, ‘dementia-friendly’ communities to help tackle loneliness, isolation, and the risk of being confined at home in later years. Our ultimate aim is to collaborate with people affected by dementia at local, national, and international levels to ensure that community development is dementia-inclusive.
Across the six field sites in the three countries, we are using a mix of qualitative approaches, such as time-use diaries, to understand the use of time for people living with dementia, their cognitive changes and any time-related pressures. We are also conducting community network mapping to build a picture of the collective social and support networks of people living with dementia to understand their connections and relationships and what these mean to them. We are also conducting interviews with policy representatives from local government and civil servants, third-party organisations and community-based provider organisations to understand the gaps, barriers, and challenges of dementia policy implementation.
The teams intend to impact both the process and outcomes of dementia, enabling community development, strengthening an international network of community initiatives, and demonstrating the potential of co-ordinated community action to enable people in different countries to live well with dementia. The learning from data gathering will be used to inform policy development, especially regarding the notion of a ‘dementia friendly communities agenda’, making the lived experience of dementia more central to progress.
If you are a person living with dementia or unpaid carer supporting someone living with dementia and would like to participate in our research, please email Dr Mary Njoki at mary.njoki1@stir.ac.uk for further information. If you have any questions or know anyone who might be interested, please do not hesitate to get in touch. Thank you.
ENACT-DEM Team