ArticleBMC palliative care2023
Views of people living with dementia and their carers on their present and future: a qualitative study.
Article in BMC palliative care, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis 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.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient perceptions of advance care planning within primary care: a systematic review of facilitators and barriers.BMC primary care · 2025Pooled it
- "I need to talk, to talk to people": a qualitative study of service user and carer views and priorities for social functioning in schizophrenia-spectrum disorders.Community mental health journal · 2026Article
- Navigating resistive behavior that adversely affects the intake of food and fluids in people living with dementia: A multiple case study.Journal of Alzheimer's disease : JAD · 2026Article
- Article
- Theme recognition and evolutionary analysis of older adults cognitive disorder prevention and control policies based on the BERTopic model.Frontiers in public health · 2026Article
- Transitions to Long-Term Care for People Living with Dementia: Social Death and Social (Dis) Connections.Nursing reports (Pavia, Italy) · 2025Article
- Suffering and loss in Lewy body dementia: Applying a palliative care lens to a longitudinal narrative study.Palliative & supportive care · 2025Article
- Fears and uncertainties of people with Parkinson's disease.Journal of Parkinson's disease · 2025Article
- Supporting a Family Member with Dementia to Live at Home: The Experiences of Caregivers.Healthcare (Basel, Switzerland) · 2025Article
- "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
- Exploration of family caregivers' experiences on coping in dementia care in Ghana: a phenomenological study.BMC psychology · 2024Article
- Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- In Their Own Words: Fears Expressed by People with Parkinson's Disease in an Online Symptom Database.Journal of Parkinson's disease · 2024Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundDementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future.
methodsSemi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis.
resultsFindings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks.
conclusionFocusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions.
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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.