ArticleBMC geriatrics2020
Family carers' involvement strategies in response to sub-optimal health services to older adults living with dementia - a qualitative study.
Article in BMC geriatrics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Older caregivers' responsibilities and strategies for their cohabiting partners living at home-a qualitative systematic literature review.Frontiers in public health · 2025Pooled it
- Pain Assessment and Management in Dementia Care: Qualitative Perspectives of People With Dementia, Their Families, and Healthcare Professionals.Journal of clinical nursing · 2025Article
- Unveiling the qualities of a 'good doctor': family carers' and healthcare professionals' perspective on dementia healthcare in India.International journal for equity in health · 2025Article
- Using a Trauma-Informed Care Approach to Understand Family Caregivers' Experiences of Accessing Formal Supports in Dementia Care.Journal of family nursing · 2025Article
- Situating support for people living with rarer forms of dementia.BMC geriatrics · 2023Article
- Barriers to providing internet-based home care services for urban older adults in China: a qualitative study of the service providers.BMC geriatrics · 2023Article
- Healthcare professionals' perception of using a web-based reminiscence therapy to support person with dementia during the COVID-19 pandemic.Aging clinical and experimental research · 2023Article
- The memory clinic and psychosocial intervention: Translating past promise into current practices.Frontiers in rehabilitation sciences · 2023Article
- Health literacy of informal caregivers of older adults with dementia: results from a cross-sectional study conducted in Florence (Italy).Aging clinical and experimental research · 2023Article
- Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers.Dementia (London, England) · 2022Article
- Impact of a dementia-friendly program on detection and management of patients with cognitive impairment and delirium in acute-care hospital units: a controlled clinical trial design.BMC geriatrics · 2022Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
backgroundWhile dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities.
methodsQualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology.
resultsTwo main involvement strategies were identified: 1) being "the hub in the wheel" and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers' weighing conflicting concerns and perceived costs and benefits.
conclusionsAwareness and acknowledgment of family carers' strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers' own perspectives on carer involvement is a necessary precursor to developing good care partnerships.
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