ArticleInternational journal of qualitative studies on health and well-being2017
Supporting activity engagement by family carers at home: maintenance of agency and personhood in dementia.
Article in International journal of qualitative studies on health and well-being, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 51 citations in OpenAlex.
- Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence.Social psychiatry and psychiatric epidemiology · 2020Pooled it
- Family carers and the provision of person-centred dementia care for activities of daily living.Dementia (London, England) · 2026Article
- Non-exercise, home-based interventions for persons living with dementia: A commentary on a systematic review.British journal of neuroscience nursing · 2025Article
- Unveiling the metaphors of (in)formal care: understanding dementia through language.The Gerontologist · 2025Article
- Examining Help-Seeking Behavior in People Living Alone With Cognitive Impairment.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2025Article
- Article
- Exploring the Experiences of Times Without Care and Encounters in Persons With Dementia in the Swiss and German Nursing Home and Domiciliary Care Settings: Protocol for an Ethnographic Multimethods Study.JMIR research protocols · 2024Article
- "I Want to Do Something" - Exploring What Makes Activities Meaningful for Community-Dwelling People Living With Dementia: A Focused Ethnographic Study.Qualitative health research · 2024Article
- How close family members contribute to the occupational experiences of their relatives with dementia in long-term residential care: An interpretative phenomenological analysis.The British journal of occupational therapy · 2024Article
- Caring for a home-dwelling older parent with mental health problems: a narrative analysis of family caregivers' experiences.International journal of qualitative studies on health and well-being · 2023Article
- Daily sleep, well-being, and adult day services use among dementia care dyads.Aging & mental health · 2022Article
- Family Visiting Restrictions and Postoperative Clinical Outcomes: A Retrospective Analysis.Nursing reports (Pavia, Italy) · 2022Article
- Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom.Nutrients · 2022Article
- How to implement person-centred care and support for dementia in outpatient and home/community settings: Scoping review.BMC health services research · 2022Article
- Companionship and Sexual Issues in the Aging Population.Indian journal of psychological medicine · 2021Article
- Family carers' experiences of nutritional care for people living with dementia at home: An interpretative phenomenological analysis.Dementia (London, England) · 2021Article
- The Seven Selves of Dementia.Frontiers in psychiatry · 2021Review
- Framework for patient, family-centred care within an Australian Community Hospital: development and description.BMJ open quality · 2020Review
- Co-creativity, well-being and agency: A case study analysis of a co-creative arts group for people with dementia.Journal of aging studies · 2019Article
- Self-Management of Dementia by Family Carers: A Scoping Review.Gerontology & geriatric medicineArticle
Corrections and comments
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Authors and funding
3 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
An explorative paper to describe how family carers, through the caregiving journey, reaffirm and promote the agency of people with dementia. Agency is an important concept in dementia care and is crucial to the promotion of wellbeing and the delivery of person-centred care. This article is based on one of the key findings of a study that explored family carers' experiences of engaging their relatives in daily activities in domestic settings. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers of people with dementia who were recruited via local community mental health teams. Then five focus groups were conducted with 21 participants accessed through carers support groups. Interviews and focus groups were transcribed, coded and analysed using a grounded theory method. Findings showed the process in which family carers encouraged and sustained a sense of autonomy and control (agency) in their relative's daily activities. Key strategies used by carers included: being non-judgemental; facilitating a sense of worth; taking calculated risks; maintaining the continuity of their relative's identity; enhancing a sense of connection with their relative's role and identity using enjoyable activities; preventing inactivity and attending to the bodily source of the agency. Lack of support for carers could ultimately pose a risk to the maintenance of the agency of people with dementia. This study provides a deeper insight into the process used by home carers to support the agency of people with dementia. This is essential if practitioners are to identify and develop more realistic intervention strategies and to work in effective partnership with family carers. The implications for the creation of dementia-friendly communities are discussed.
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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.