Title: Living alone with dementia: managing without informal support to contact and navigate services
Funder: Department of Health and Social Care

Abstract: 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 without 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 and questions 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. To achieve this, three research questions have been posed: What community and social care support is used by people with dementia who live alone and do not have someone to act as a point of contact, and what support do they want? What social care provision exists for this group in England? What are the priority action points and what information or resources are needed to help improve social care provision for this population in England? Methods The research is separated into four distinct, but interrelated, work packages (WPs). Findings from each WP will inform subsequent work packages. WP1 is a brief bi-regional service audit completed online by lead social care dementia commissioners. Descriptive analyses of the data will provide an overview of the type of support available for this client group. WP2 comprises in person or online interviews/focus groups with people with dementia who live alone and don t have someone to navigate their care. Participants will be recruited through Innovations in Dementia and statutory and non-statutory services. Thematic analysis of the data will provide an understanding of the unique needs of this group and whether and how these are supported by social care services. WP3 comprises four qualitative case studies of different service examples and their wider local authority context. Applying Framework analysis to interviews and documents collected in each case site will help to identify processes and contexts that support service and pathway development and sustainability and enable cross-case comparisons. WP4 consists of two workshops with a range of stakeholders. Using elicitation devices to identify and prioritise areas for action and help co-design resources for different stakeholders will facilitate improved social care support for this group of people with dementia. Timelines for delivery The project is due to commence in April 2022 and will report in November 2023. Anticipated impact and dissemination Feedback loops, for example, regional Sharing and Learning Networks and bi-monthly newsletters, are embedded throughout the project to maximise opportunities for rapid action in response to findings. 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.

Lay abstract: Aims This project is about understanding the needs 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. We want to find out what help they receive and where from, how social care works for them, and how it could be improved. Background Lots of people with dementia live alone, and they are more at risk of not having their needs met, and of going into hospital or a care home. Family and friends are often helpful, but when a person with dementia does not have someone to act as a point of contact, or help them to access services, they may miss important appointments or not get the support they need. We currently do not know how this group manages their lives or what support is available for them. Design and methods There are three phases. A quick audit of services available for this group in two English regions. Focus groups and interviews with this group of people with dementia. In-depth interviews with service providers in four areas to find out exactly what support is available in that area, what works, and what does not work. Involvement We will have three people with dementia who live alone as advisers. We will send them information before each advisory group meeting. Someone from Innovations in Dementia will visit them to talk about the information and get their views (they can also attend the meeting if they wish). Practitioners and researchers will also be on the advisory group. Our advisory group will help to Design interview questions for people with dementia and service providers Recruit people with dementia Analyse information Keep in touch with wider networks throughout the project We will hold two analysis workshops, where a small group of people with dementia who live alone will be invited to help us analyse our findings. We will hold two stakeholder workshops, where we will share early findings with people with dementia and practitioners, and all will be invited to co-develop useful resources. We will develop sharing and learning networks in our two regions so researchers, practitioners, and people with dementia, can learn from each other throughout the project. Dissemination We will produce a report and a short, plain English summary, which we will send to all participants, advisory group members, and our sharing and learning networks. We will also send this to members of the All Party Parliamentary Group on dementia, dementia-related organisations, leaders of adult social care teams, and local MPs. The Dementia Engagement and Empowerment Project (DEEP) network will help to share it. We will write two academic articles and present at two conferences.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL