ArticleBMC geriatrics2012
Why are family carers of people with dementia dissatisfied with general hospital care? A qualitative study.
Article in BMC geriatrics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 3 of them syntheses that pooled it.
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Who cites it
37 citing papers in PubMed, 3 syntheses or guidelines pooled it, 128 citations in OpenAlex.
- Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers.Dementia (London, England) · 2022Pooled it
- Informal carers' perspectives on the delivery of acute hospital care for patients with dementia: a systematic review.BMC geriatrics · 2018Pooled it
- Stakeholders perspectives on the key components of community-based interventions coordinating care in dementia: a qualitative systematic review.BMC health services research · 2017Pooled it
- Latinos' beliefs regarding the role played by nonmedical factors in the quality of Alzheimer's disease care: Findings from a NYC community-based sample.SSM. Qualitative research in health · 2026Article
- Practices and experiences of nursing staff delivering acute care for people with dementia in surgical-medical wards in Chile: qualitative study.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Quality-of-life factors at home and in health care settings for people living with dementia.The Gerontologist · 2025Article
- Identifying Patient, Care Partner, and Clinician Needs for Functional Recovery Following Hospitalization When Dementia is Present.Journal of the American Medical Directors Association · 2025Article
- Emergency department use and responsiveness to the palliative care needs of patients with dementia at the end of life: A scoping review.Palliative & supportive care · 2025Article
- Article
- Hospital Experiences of Carers in Relation to the Comprehensive Care Standard: A Mixed Method Study.Journal of clinical nursing · 2024Article
- A Patient and Public Engagement Project to Inform Dementia Care in a UK Hospital Trust.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Article
- Experiences of in-hospital care among dementia caregivers in the context of high neighborhood-level disadvantage.Journal of the American Geriatrics Society · 2023Article
- PROTOCOL: The effectiveness of sensory interventions targeted at improving occupational outcomes, quality of life, well-being and behavioural and psychological symptoms for older adults living with dementia: A systematic review and meta-analysis.Campbell systematic reviews · 2023Article
- New horizons for caring for people with dementia in hospital: the DEMENTIA CARE pointers for service change.Age and ageing · 2022Article
- What older people and their relatives say is important during acute hospitalisation: a qualitative study.BMC health services research · 2022Article
- [Relatives of patients with dementia as a link and mediator in acute care hospitals].Zeitschrift fur Gerontologie und Geriatrie · 2021Review
- Article
- Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers.Healthcare (Basel, Switzerland) · 2021Article
- Place of Death for Persons With and Without Cognitive Impairment in the United States.Journal of the American Geriatrics Society · 2021Article
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundFamilies and other carers report widespread dissatisfaction with general hospital care for confused older people.
methodsWe undertook a qualitative interviews study of 35 family carers of 34 confused older patients to ascertain their experiences of care on geriatric and general medical, and orthopaedic wards of a large English hospital. Transcripts were analysed using a grounded theory approach. Themes identified in interviews were categorised, and used to build a model explaining dissatisfaction with care.
resultsThe experience of hospital care was often negative. Key themes were events (illness leading to admission, experiences in the hospital, adverse occurrences including deterioration in health, or perceived poor care); expectations (which were sometimes unrealistic, usually unexplored by staff, and largely unmet from the carers' perspective); and relationships with staff (poor communication and conflict over care). Expectations were influenced by prior experience. A cycle of discontent is proposed. Events (or 'crises') are associated with expectations. When these are unmet, carers become uncertain or suspicious, which leads to a period of 'hyper vigilant monitoring' during which carers seek out evidence of poor care, culminating in challenge, conflict with staff, or withdrawal, itself a crisis. The cycle could be completed early during the admission pathway, and multiple cycles within a single admission were seen.
conclusionPeople with dementia who have family carers should be considered together as a unit. Family carers are often stressed and tired, and need engaging and reassuring. They need to give and receive information about the care of the person with dementia, and offered the opportunity to participate in care whilst in hospital. Understanding the perspective of the family carer, and recognising elements of the 'cycle of discontent', could help ward staff anticipate carer needs, enable relationship building, to pre-empt or avoid dissatisfaction or conflict.
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