ArticleInternational journal of geriatric psychiatry2019
Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework.
Article in International journal of geriatric psychiatry, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 of them syntheses that pooled it.
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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
25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 48 citations in OpenAlex.
- A Systematic Mapping Review of 525 Randomised Controlled Trials on Pharmacological and Non-pharmacological Interventions for People Living With Dementia and Their Formal and Informal Carers in Chinese Communities.International journal of geriatric psychiatry · 2026Pooled it
- Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies.Palliative medicine · 2023Pooled it
- "I tell you what it's the hardest job": the experiences of family carers providing support for people with dementia at home in the last year of life.BMC geriatrics · 2025Article
- Professional Support Through a Tailor-Made Mobile App to Reduce Stress and Depressive Symptoms Among Family Caregivers of People With Dementia: Mixed Methods Pilot Study.JMIR formative research · 2025Article
- Assessing the impact of day programs on individuals living with dementia and their family/friend caregivers (AIDA-DemCare): protocol of a prospective cohort study combined with a qualitative evaluation.BMC public health · 2025Article
- "Diagnose & Adios": Multi-Perspective Insights on Formal Service Use in Dementia Family Caregivers.The Gerontologist · 2025Article
- "How do You Take that Much Time for One Person's Life?" Experiences of Dementia Caregivers Who are Not Immediate Family.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2025Article
- Health Programmes for Older Adults Who Are the Primary Family Caregivers for Their Partners: A Scoping Review.Healthcare (Basel, Switzerland) · 2024Article
- Impact of care-recipient relationship type on quality of life in caregivers of older adults with dementia over time.Age and ageing · 2024Article
- Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers' Positive Experiences.Qualitative health research · 2023Article
- Article
- Integrative review of singing and music interventions for family carers of people living with dementia.Health promotion international · 2022Review
- Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.Health and quality of life outcomes · 2022Article
- Article
- Covid-19 and the quality of life of people with dementia and their carers-The TFD-C19 study.PloS one · 2022Article
- Going for gold: Sports and exercise groups for people with dementia and carers contribute to their well-being.Frontiers in rehabilitation sciences · 2022Article
- Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain-Portugal cross-border.Health and quality of life outcomes · 2021Article
- Needs of Alzheimer's Charges' Caregivers in Poland in the Covid-19 Pandemic-An Observational Study.International journal of environmental research and public health · 2021Observational
- Qualitative research of informal caregivers' personal experiences caring for older adults with dementia in Lithuania.International journal of mental health systems · 2021Article
- A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum.Journal of Alzheimer's disease : JAD · 2021Article
Corrections and comments
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Authors and funding
10 authors at 7 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia.
methodsWe studied family carers of people with dementia and staff working in dementia services iteratively using in-depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study-specific advisory group of family carers.
resultsWe completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment.
conclusionsFor carers of people with dementia, the QOL construct was found to include condition-specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.
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Registered trials
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