ArticleThe Gerontologist2021
Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR).
Article in The Gerontologist, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 18 citations in OpenAlex.
- Effectiveness of physical rehabilitation for physical functioning and quality of life in long-term care residents with dementia: a systematic review and meta-analysis.JBI evidence synthesis · 2024Pooled it
- Scales to measure core outcomes for the quality of dementia care in home or residential aged care facilities: a rapid review.BMJ open · 2025Review
- Assessing quality of life-a scoping review of studies presenting quality of life instruments for informal caregivers of persons with dementia.BMC geriatrics · 2025Article
- Technology that CARES: Enhancing dementia care through everyday technologies.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Assessing the psychometric performance of the EQ-5D-5L among informal caregivers of people with dementia.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 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
- A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- UK General Population Utility Values for the SIDECAR-D Instrument Measuring the Impact of Caring for People With Dementia.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 7 institutions in 1 country.
Funding
Abstract
BACKGROUND AND
objectivesA 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends).
methodsItems were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken.
resultsFollowing factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). DISCUSSION AND IMPLICATIONS: SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
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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.