Abstract
Objectives: Informal 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. Methods: Phase 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. Results: Phase 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. Conclusions: Carer-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.
Original language | English |
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Pages (from-to) | 34-52 |
Number of pages | 19 |
Journal | Australasian Journal on Ageing |
Volume | 42 |
Issue number | 1 |
DOIs | |
Publication status | Published - Mar 2023 |
Keywords
- dementia
- informal caregivers
- quality of health care
- quality of life
- registries