| dc.description.abstract | People with dementia who live alone, sometimes with little or no family or informal support, are an often-overlooked group that is that is increasing in number: possibly as many as one in three of all people with dementia live alone. There is still a widespread assumption that people with dementia have a carer available, and neither NHS services nor community provision are designed to accommodate the needs of people living alone. This is unhelpful and costly for individuals and services. We report on research exploring what needs to change if we are to provide appropriate services and support for people who live alone with dementia. The report outlines findings from an exploration of primary care data to examine the prevalence of living alone, a scoping review of research and grey literature that included 200 peer-reviewed journal articles, and consultations with people with lived experience, practitioners and other stakeholders. Forty per cent of people with dementia in the community were living alone in England in 2023. People living alone, predominantly older women, experience significant inequalities across the pathway in relation to diagnosis and support from services, in capability for living well, and extending to end-of-life care. We identified four main avenues through which these inequalities can be addressed: 1. Knowing the numbers • Understanding how many people are living alone with dementia in each area as a basis for commissioning appropriate service pathways • Designing systems to facilitate recording of living situation and informal support and making sure this is routinely recorded and appropriately shared 2. Making services more responsive • Services articulating how pathways and services are designed or adapted to meet the needs of people living alone, and proactively initiating and maintaining contact • Training and equipping practitioners to implement best practice • Giving people living alone access to a link worker or care co-ordinator to help navigate health, social care and community services • Services reviewing their approach to ensure they are welcoming and inclusive, and communicating with people in a way that meets their needs 3. Strengthening community support • Services providing support for distant carers, and engaging and communicating with them irrespective of where they are based • Strengthening the capability of community agencies to include people living alone and respond to their needs. • Including reference to people living alone in initiatives to raise public awareness of dementia. 4. Making research inclusive and practically relevant • Regarding living situation as a key indicator of inclusivity in dementia research and ensuring people living alone are included in research and where appropriate considered as a distinct group. • Targeting research funding towards developing and sustainably implementing good practice in supporting people living alone with dementia, and where relevant their families, and strengthening community agencies, networks and support. The findings highlight the need for a paradigm shift in addressing the needs of people living alone with dementia. Increasing awareness is the first important step. By implementing the recommended actions, we can make this paradigm shift a reality and reduce the inequalities resulting from living alone with dementia. benefit NHS and social care services as well as transforming the experience of people who are coping with dementia alone. | en_GB |
