Living alone with dementia - managing without informal support to contact and navigate services: A mixed methods protocol

Background: Much of the evidence about good practice and commissioning in dementia services focuses on the person with dementia-carer dyad. We know that people with dementia who live alone and do not have informal support experience worse outcomes, but we know little about the additional support needs experienced by this group, nor do we know about service responses to accommodate any additional or different needs.

Aim: This research aims to understand the needs and experiences of people with dementia who live on their own and do not have someone to help them access services or act as a point of contact. It will also explore whether and how services respond to the unique needs of this group of people with dementia to help them to live at home for as long as possible.

Methods: The project commenced in April 2022 and will report in November 2023. There are four consecutive elements: an on-line audit of social care dementia commissioners in local authorities in two regions of England about services for this client group; in person/on-line interviews/focus groups with people with dementia who live alone and don’t have someone to navigate their care; and qualitative case studies of four different service examples. Two stakeholder consultation workshops will be held at the end of the project to identify areas for action and co-design resources for different stakeholders. The findings from each element will inform subsequent ones.

Impact: Feedback loops will be embedded throughout this research to maximise opportunities for rapid action in response to findings. These include regional Sharing and Learning Networks and bi-monthly newsletters. A series of outputs targeted at different audiences, including academic and practice publications and events, and co-produced resources for people with dementia and social care commissioners and providers, will be produced. Dementia-focused networks will facilitate dissemination.