SynthesisPloS one2018
How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures.
Synthesis in PloS one, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04944420 (Evaluating an App-based Treatment for Distressed Caregivers of Persons With Moderate Dementia), which is not on this map. Cited by 17 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Evaluating an App-based Treatment for Distressed Caregivers of Persons With Moderate Dementia: Health enSuite Caregivers Study
Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Factors Related to the Quality of Life in Family Carers of People With Dementia: A Meta-Analysis.Journal of geriatric psychiatry and neurology · 2021Pooled it
- Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature.BMC geriatrics · 2019Pooled it
- Developing a Quality-of-Life Measure for Carers of People with Dementia for Use in Economic Evaluations: Results from the COCOON Project.PharmacoEconomics · 2026Article
- Expressed emotions and caregiving appraisals among relatives of patients with psychotic disorders: a cross-sectional study.BMC psychiatry · 2026Article
- Assessing quality of life-a scoping review of studies presenting quality of life instruments for informal caregivers of persons with dementia.BMC geriatrics · 2025Article
- Use of the adult social care outcomes toolkit (ASCOT) in research studies: an international scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Caregiver perspectives enable accurate diagnosis of neurodegenerative disease.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.Neurology. Clinical practice · 2024Article
- Impact of care-recipient relationship type on quality of life in caregivers of older adults with dementia over time.Age and ageing · 2024Article
- Living well while providing support: validation of LTCQ-Carer for assessing informal carers' quality of life.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Feasibility, validity and reliability of the ASCOT-Proxy and ASCOT-Carer among unpaid carers of people living with dementia in England.Health and quality of life outcomes · 2023Article
- Carer-reported measures for a dementia registry: A systematic scoping review and a qualitative study.Australasian journal on ageing · 2023Article
- The impact of different researchers to capture quality of life measures in a dementia randomised controlled trial.Trials · 2023Article
- Observational
- Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR).The Gerontologist · 2021Article
- Characteristics and well-being of urban informal home care providers during COVID-19 pandemic: a population-based study.BMJ open · 2020Article
- Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia.The patient · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this.
methodsA systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties.
resultsTen instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer's Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population.
conclusionThe CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties.
Indexed as
Identifiers
What OpenQuestion holds
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.