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Dow J, Robinson J, Robalino S, et al. How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures. PLoS One. 2018;13(3):e0193398doi: 10.1371/journal.pone.0193398.
Dow, J., Robinson, J., Robalino, S., Finch, T., McColl, E., & Robinson, L. (2018). How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures. PloS one, 13(3), e0193398. https://doi.org/10.1371/journal.pone.0193398
Dow, Johanne, et al. "How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures." PloS one vol. 13,3 (2018): e0193398. doi: https://doi.org/10.1371/journal.pone.0193398
Dow J, Robinson J, Robalino S, Finch T, McColl E, Robinson L. How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures. PLoS One. 2018 Mar 14;13(3):e0193398. doi: 10.1371/journal.pone.0193398. eCollection 2018. PMID: 29538433; PMCID: PMC5851581.
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PLoS One. 2018 Mar 14;13(3):e0193398. doi: 10.1371/journal.pone.0193398. eCollection 2018.

How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures.

PloS one

Johanne Dow, Jonah Robinson, Shannon Robalino, Tracy Finch, Elaine McColl, Louise Robinson

Affiliations

  1. Institute of Health & Society, Newcastle University, Newcastle, United Kingdom.
  2. Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom.

PMID: 29538433 PMCID: PMC5851581 DOI: 10.1371/journal.pone.0193398

Abstract

BACKGROUND: In 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.

METHODS: A 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.

RESULTS: Ten 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.

CONCLUSION: The 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.

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