ArticleDementia (London, England)2021
Experiences of people with memory disorders and their spouse carers on influencing formal care: "They ask my wife questions that they should ask me".
Article in Dementia (London, England), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed, 2 syntheses or guidelines pooled it, 12 citations in OpenAlex.
- Older caregivers' responsibilities and strategies for their cohabiting partners living at home-a qualitative systematic literature review.Frontiers in public health · 2025Pooled it
- Pooled it
- Challenges and needs in dementia care: people with dementia and family caregivers' experiences from diagnosis to follow-up in Swedish primary care: a qualitative study.Scandinavian journal of primary health care · 2026Article
- Understanding the Dementia Care Triad: Findings From a Longitudinal Qualitative Study With People Living With Dementia, Their Carers, and Their Healthcare Professionals.Dementia (London, England) · 2026Article
- Article
- Shared decision-making in persons living with dementia: A scoping review.Dementia (London, England) · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPeople with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers.
methodsQualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders.
findingsThree themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers' decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited.
conclusionsPeople with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.