Living alone with dementia is a neglected source of inequality: findings from a scoping review of research evidence.

BACKGROUND: With growing proportions of single-person households, increasing numbers of people with dementia are living alone, challenging the still-prevalent assumption that people have an informal carer available. We aimed to characterise the research literature on people living alone with dementia and summarise what is known about their characteristics and needs.

METHOD: This scoping review followed Joanna Briggs Institute methodology and PRISMA-ScR reporting guidelines. Seven databases (PubMed, Web of Science, CINAHL, Ageline, EMBASE, PsycInfo, Social Policy and Practice) were searched for English-language publications on 18/01/2024, without date limits. Eligible studies reported on people with dementia living alone, using any research design; reviews, editorials, and conference abstracts were excluded. Titles, abstracts, and full texts were screened independently. Data were extracted using structured forms and summarised narratively, grouping quantitative findings descriptively and qualitative findings thematically.

RESULTS: We included 200 articles (162 quantitative, 38 qualitative) from 161 studies. Living alone was the primary focus in 30.5% of articles, living situation was explored in secondary comparisons or sub-group analyses in 62.5%, and noted only in describing samples in 7%. Most research (80.1%) was from Europe or North America. The first study was published in 1962 and the next in 1984, since when the annual number of publications has gradually increased. Across studies, people living alone with dementia were commonly described as older, more often female, and as experiencing significant unmet need. Reports noted variation in the extent of informal support, with some people receiving little or no support. Compared with those living with others, people living alone were often described as having less timely diagnosis, lower access to formal services, higher home care costs, and greater likelihood of moving into residential care or dying outside the home. Studies commonly reported social isolation, loneliness, and difficulties with daily living in people living alone with dementia. Family members providing support at a distance were described as receiving little assistance. Few studies examined approaches to addressing these needs or improving support.

CONCLUSIONS: This review highlights living alone with dementia as a growing but neglected source of inequality. Practical steps are needed now to address this issue in policy, service provision, practice and research.