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Cited by 21Dementia and Cognitive Impairment ResearchNursing care and researchGeriatric Care and Nursing Homes

Supporting self-care of long-term conditions in people with dementia: A systematic review

Open access
Rees, Jessica, Tuijt, Remco, Burton, Alexandra, Walters, Kate, Cooper, Claudia·2021·International Journal of Nursing Studies
DOI 10.1016/j.ijnurstu.2019.103432
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Abstract

Background Long-term conditions are common in people living with dementia; their self-management is an important determinant of wellbeing. Family carers often support or substitute self-care activities, and act as proxies for self-management, as dementia progresses.Objectives To conduct the first systematic review of how management of long-term conditions in people with dementia is best enabled and supported, including factors that facilitate or inhibit self-management and management by a proxy.Design Systematic review.Data sources We systematically searched MEDLINE, PsychINFO, Embase and Allied and Complementary Medicine databases up to November 2018.Review methods We identified the long-term conditions most prevalent in people with dementia that require an element of self-management. We then developed our inclusion criteria to identify qualitative and quantitative studies describing the self-management (or self-management assisted by family carers) of long-term conditions in people with dementia. Two authors independently rated study validity using a standardised checklist. We synthesised qualitative and quantitative findings using a data driven convergent synthesis approach.Results We included 12 articles meeting predetermined inclusion criteria: seven qualitative, two case studies, two quantitative and one mixed methods study. We identified four main themes across these studies: (1) dementia symptoms impeding treatment regimens (forgetfulness, decreased understanding, ability to communicate symptoms and behavioural and psychological symptoms); (2) adapting routines to be simpler, (using memory aids and accommodating physical limitations); (3) negotiating self-management support (carer availability and knowledge; balancing needs for safety and empowerment); and (4) interface with professionals, (Routine simplification, condition specific education, and acknowledging carer role).Conclusions People living with dementia can be supported to manage their own health for as long as possible, through simplifying routines and reminding, but where this can no longer be negotiated, carers take over responsibility for self-management, often due to safety concerns. Empowerment of people with dementia to remain involved in their care reduces the loss experienced by this transition. Communication and partnership between clinicians and carers is critical when supporting people living with a long-term condition and dementia. Care planning for people living with dementia and a long-term condition should include explicit discussion of how these partnerships will work and guidance on strategies carers can use to support people to self-manage long-term conditions.

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  • Patients without carers experienced challenges during transitions, as arranging transport or follow-up care was often not considered healthcare professionals' responsibility, creating a service gap.

    “Patients without carers experienced challenges during transitions, as arranging transport or follow-up care was often not considered HCPs’ responsibility, creating a service gap (CMOC22) [27, 45, 46, 53].”

    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 [27]

    The Discussion (page unavailable) says that people with dementia without an available carer are vulnerable to disjointed healthcare, and §3 describes missed appointments and a lack of joined-up care when someone lives alone. The paper does not say that arranging transport or follow-up care was considered outside healthcare professionals’ responsibility; its discussion of a transition concerns responsibility for self-management, not transitions between services. (LLM, conf=0.87)

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  • Adherence to self-management in the community was improved when patients managed other conditions before dementia onset, as cognitive decline impacted condition knowledge less (CMOC2).

    “Conversely, evidence suggested that adherence to self-management in the community was improved when patients managed other conditions before dementia onset, as cognitive decline impacted condition knowledge less (CMOC2) [27, 53].”

    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 [27]

  • When patients were unable to communicate their needs, fear of missing symptoms and uncertainty had potential to inhibit care management at home, and contributed to carer burden.

    “This was further complicated when patients were unable to communicate their needs, as fear of missing symptoms and uncertainty had potential to inhibit care management at home, and contributed to carer burden (CMOC29) [27].”

    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 [27]

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Authors
Rees, J., Tuijt, R., Burton, A., Walters, K., & Cooper, C.
Affiliations
University College London (GB)
Corresponding author
Rees, Jessica
ORCID
Venue
International Journal of Nursing Studies
Publisher
Elsevier BV
Published
2021-04
Volume
116
Pages
103432
ISSN
0020-7489 (ISSN-L)
DOI
10.1016/j.ijnurstu.2019.103432
OpenAlex
W2976796842
Cited by
21
References
50
Citations by year
2026: 2 · 2025: 10 · 2024: 2 · 2023: 2 · 2022: 1 · 2021: 2 · 2020: 2
FWCI
0.21
Type
journal article
Language
en
Open access
Licence
Locations
  • International Journal of Nursing Studies (publishedVersion)
  • PubMed (publishedVersion)
  • UCL Discovery (University College London) (submittedVersion)
Funders
  • Collaboration for Leadership in Applied Health Research and Care - Greater Manchester
  • Economic and Social Research Council (ES/P000592/1)
  • National Institute for Health Research
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
Keywords
dementia, chronic disease, self-management, self-care, family caregivers, behavioral and psychological symptoms of dementia, memory aids, care planning, empowerment, clinician education
MeSH terms
Communication, Dementia, Humans, Self Care, Caregivers, Qualitative Research

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