ArticleAustralasian journal on ageing2023
Carer-reported measures for a dementia registry: A systematic scoping review and a qualitative study.
Article in Australasian journal on ageing, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- 'I just feel so unloved': using grounded theory to explore adult children's experiences of unresponsiveness from their parents living with dementia.Aging & mental health · 2025Article
- An Overview of Reviews on Telemedicine and Telehealth in Dementia Care: Mixed Methods Synthesis.JMIR mental health · 2025Review
- Carer-reported measures for a dementia registry: A systematic scoping review and a qualitative study.Australasian journal on ageing · 2023Article
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Authors and funding
14 authors.
Funding
Abstract
objectivesInformal carers play a critical role in supporting people with dementia. We conducted a scoping review and a qualitative study to inform the identification and development of carer-reported measures for a dementia clinical quality registry.
methodsPhase 1-Scoping review: Searches to identify carer-reported health and well-being measures were conducted in three databases (MEDLINE, PsycINFO and Embase). Data were extracted to record how the measures were administered, the domains of quality-of-life addressed and whether they had been used in a registry context. Phase 2-Qualitative study: Four focus groups were conducted with carers to examine the acceptability of selected measures and to identify outcomes that were important but missing from these measures.
resultsPhase 1: Ninety-nine carer measures were identified with the top four being the Zarit Burden Interview (n = 39), the Short-Form12/36 (n = 14), the Brief Coping Orientation to Problems Experienced scale and the Sense of Coherence scale (both n = 9). Modes of administration included face-to-face (n = 50), postal (n = 11), telephone (n = 8) and online (n = 5). No measure had been used in a registry context. Phase 2: Carers preferred brief measures that included both outcome and experience questions, reflected changes in carers' circumstances and included open-ended questions.
conclusionsCarer-reported measures for a dementia clinical quality registry need to include both outcome and experience questions to capture carers' perceptions of the process and outcomes of care and services. Existing carer-reported measures have not been used in a dementia registry context and adaption and further research are required.
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