Living Alone with Dementia in England – Managing without Informal Support to Contact and Navigate Services: A Mixed-Methods Protocol
Open accessAbstract
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.
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Living alone with dementia without carer involvement has been associated with worse health outcomes, such as lower life satisfaction and delayed access to services.
“Living alone with dementia without carer involvement has been associated with worse health outcomes, such as lower life satisfaction and delayed access to services [113]; as those without carers are often excluded from research this highlights a gap in our understanding of how to assist those returning home without a network to support their needs [113].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [113]
The Introduction reports delayed access to support for people with dementia living alone without support, and says people without a carer are often excluded from research. It also reports lower life satisfaction among people living alone, including those with low support, but does not establish that finding specifically for those without a carer. (LLM, conf=0.84)
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Cites
Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013) · BMC Medical Research Methodology · doi:10.1186/1471-2288-13-117 · Cited by 10,865 · see citing works
Validity and generalization in future case study evaluations
Yin, R. K. (2013) · Evaluation · doi:10.1177/1356389013497081 · Cited by 1,435 · see citing works
Living Well with Dementia: A National Dementia Strategy
(2009) · PsycEXTRA Dataset · doi:10.1037/e608082011-001 · Cited by 1,118 · see citing works
Using Documents in Social Research
Prior, L. (2003) · SAGE Publications Ltd eBooks · doi:10.4135/9780857020222 · Cited by 1,007 · see citing works
Dementia: assessment, management and support for people living with dementia and their carers
Duff, C. (2018) · Lincoln Repository (University of Lincoln) · Cited by 561 · see citing works
A systematic review of ethnicity and pathways to care in dementia
Mukadam, N., Cooper, C., & Livingston, G. (2011) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.2484 · Cited by 323 · see citing works
Early identification and treatment of Alzheimer's disease: Social and fiscal outcomes
Weimer, D. L., & Sager, M. A. (2009) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2009.01.028 · Cited by 254 · see citing works
People with dementia living alone: what are their needs and what kind of support are they receiving?
Miranda‐Castillo, C., Woods, B. T., & Orrell, M. W. (2010) · International Psychogeriatrics · doi:10.1017/s104161021000013x · Cited by 182 · see citing works
Murphy, K., Jordan, F., Hunter, A., Cooney, A., & Casey, D. (2014) · Dementia · doi:10.1177/1471301213512489 · Cited by 174 · see citing works
Documentary Research in the Social Sciences
(2019) · doi:10.4135/9781529716559 · Cited by 173 · see citing works
Fredriksen-Goldsen, K. I., Jen, S., Bryan, A. E. B., & Goldsen, J. (2018) · Journal of Applied Gerontology · doi:10.1177/0733464816672047 · Cited by 148 · see citing works
Unmet needs, quality of life and support networks of people with dementia living at home
Miranda‐Castillo, C., Woods, B. T., Galboda, K., Oomman, S., Olojugba, C., & Orrell, M. W. (2010) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-8-132 · Cited by 139 · see citing works
Samsi, K., & Manthorpe, J. (2013) · International Psychogeriatrics · doi:10.1017/s1041610213000306 · Cited by 137 · see citing works
Eichler, T. S., Hoffmann, W. U., Hertel, J., Richter, S., Wucherer, D., Michalowsky, B., Dreier, A., & Thyrian, J. R. (2016) · Journal of Alzheimer s Disease · doi:10.3233/jad-151058 · Cited by 70 · see citing works
Ebly, E. M., Hogan, D. B., & Rockwood, K. J. (1999) · Dementia and Geriatric Cognitive Disorders · doi:10.1159/000017202 · Cited by 69 · see citing works
Living Alone with Mild-To-Moderate Dementia: Findings from the IDEAL Cohort
Clare, L., Martyr, A., Henderson, C., Gamble, L. D., Matthews, F. E., Quinn, C., Nelis, S. M., Rusted, J. M., Thom, J. M., Knapp, M. R. J., et al. (2020) · Journal of Alzheimer s Disease · doi:10.3233/jad-200638 · Cited by 58 · see citing works
Black and minority ethnic people with dementia and their access to support and services
Moriarty, J., Sharif, N., & Robinson, J. (2014) · Cited by 46 · see citing works
Duane, F., Brasher, K., & Koch, S. H. (2011) · Dementia · doi:10.1177/1471301211420331 · Cited by 45 · see citing works
Where does risk feature in community care practice with older people with dementia who live alone?
Waugh, F. (2009) · Dementia · doi:10.1177/1471301209103255 · Cited by 28 · see citing works
Soto, M. E., Andrieu, S., Garès, V., Cesari, M., Guyonnet, S., Cantet, C., Vellas, B. J., & Nourhashémi, F. (2015) · Journal of the American Geriatrics Society · doi:10.1111/jgs.13347 · Cited by 28 · see citing works
Evans, D. J., Price, K., & Meyer, J. E. (2016) · SAGE Open · doi:10.1177/2158244016664954 · Cited by 24 · see citing works
Removing the 'gag' : Involving people with dementia in research as advisers and participants
Brooks, J., Gridley, K., & Savitch, N. (2017) · SHURA (Sheffield Hallam University Research Archive) (Sheffield Hallam University) · Cited by 21 · see citing works
Self-citationAspinal, F., Bernard, S., Spiers, G., et al. (2014) · Health Services and Delivery Research · doi:10.3310/hsdr02090 · Cited by 11 · see citing works
Self-citationAspinal, F., Ledger, J., Jasim, S., Mehta, R., Raine, R., Fulop, N., & Barratt, H. (2023) · BMJ Open · doi:10.1136/bmjopen-2022-066303 · Cited by 6 · see citing works
Self-citationGridley, K., Aspinal, F., Bernard, S., & Parker, G. M. (2011) · Social Care and Neurodisability · doi:10.1108/20420911111172738 · Cited by 4 · see citing works
Self-citation
Flagged first, then by citations
Research works printed but not linked: 5
- Bowling, A. 2002. Research Methods in Health. Maidenhead: Open University Press.
- MacKenzie, J. 2009. 'The same but different: Working with lesbian and gay people with dementia'. Journal of Dementia Care, 17(6): 17-19.
- Mukadam, N, Cooper, C and Livingston, G. 2011. 'A systematic review of ethnicity and pathways to care in Dementia'. International Journal of Geriatric Psychiatry, 26(1): 12-20.
- Ritchie, J and Lewis, J. (eds.) 2003. Qualitative research practice: a guide for social science students and researchers. London: Sage.
- Ritchie, J, Lewis, J, McNaughton Nicholls, C and Ormston, R. (eds.) 2014. Qualitative Research Practice: A guide for social science students and researchers. 2nd edn. London: Sage.
Cited by
Sorted by citations
Lawson, L., Cooper, M., Tolley, C., Hand, A., & Nazar, H. (2025) · BMC Geriatrics · doi:10.1186/s12877-025-06123-0 · Cited by 10 · see citing works
Non‐Pharmacological Interventions for People With Dementia Who Live Alone: A Systematic Review
Polack, S., Bell, G., Šilarova, B., Hebditch, M., Tingle, A., Sommerlad, A., Portacolone, E., Sykes, K., & Tabet, N. (2025) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.70059 · Cited by 7 · see citing works
The Psychosocial Needs of People With Dementia Living Alone: A Narrative Synthesis Systematic Review
Cheung-Cook, T., Joddrell, P., Dening, K. H., Sobers, T., Walpert, M., & Wolverson, E. (2025) · Dementia · doi:10.1177/14713012251363090 · Cited by 2 · see citing works
Williamson, L. E., Horne, S. D., Mikelyte, R., Grey, E., Collins, P., Poyner, C., Farnood, A., & Oh, T. M. (2026) · Frontiers in Dementia · doi:10.3389/frdem.2026.1791608 · Cited by 1 · see citing works
Lorito, C. D., & Aspinal, F. (2026) · Dementia · doi:10.1177/14713012261446004 · Cited by 1 · see citing works
Self-citationLorito, C. D., & Aspinal, F. (2026) · Health & Social Care in the Community · doi:10.1155/hsc/8351470
Self-citation
- Authors
- Aspinal, F., Willcox, A., Murphy, D., Sanders, T., & Brooks, J.
- Affiliations
- University College London (GB)
- Sheffield Hallam University (GB)
- Innovations in Dementia Community Interest Company (GB)
- Leeds City Council (GB)
- Corresponding author
- Aspinal, Fiona
- Willcox, Amanda
- Murphy, Damian
- Sanders, Tim
- Brooks, Jenni
- Venue
- Journal of Long Term Care
- Publisher
- LSE Press
- Published
- 2023
- Pages
- 135-141
- ISSN
- 2516-9122 (ISSN-L)
- OpenAlex
- W4384914431
- Cited by
- 6
- References
- 21
- Citations by year
- 2026: 3 · 2025: 3
- FWCI
- 1.22
- Type
- journal article
- Language
- en
- Open access
- diamond
- doi.org
- Licence
- cc-by-nc-nd
- Locations
- Journal of Long-Term Care (publishedVersion, cc-by-nc-nd)
- London School of Economics and Political Science Research Online (London School of Economics and Political Science) (acceptedVersion)
- UCL Discovery (University College London) (submittedVersion, cc-by-nc-nd)
- SHURA (Sheffield Hallam University Research Archive) (Sheffield Hallam University) (submittedVersion, cc-by-nc-nd)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- NIHR RfPB Research for Social Care (NIHR202965)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Aging, Elder Care, and Social Issues
- Social Sciences › Education › Healthcare innovation and challenges
- Keywords
- dementia, living alone, informal support, social care services, access to services, care navigation, person-centred care, local government, home care, co-design
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