Measurement of quality of life in carers of people with dementia: a systematic review of current instruments

Problem

Dementia a public health priority. 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 (unpaid) carers, usually a family member or friend. It is estimated that the almost half of the annual cost of dementia to the UK economy (£26 billion) is covered by the work of informal carers, thus they are a vital resource to both the economy and the person they care for. The effects of caregiving have been explored in the literature through their impact on psychological and social wellbeing and quality of life. Carers of people with dementia represent a particularly vulnerable group due to the combination of circumstances they frequently deal with, such as behavioural and psychological problems in the person with dementia. Recommendations are made in both global and national health policy and clinical guidance on how carers should be supported by general practitioners and other healthcare professionals. These include recommendations that general practitioners should use instruments to identify carers who are at risk of anxiety and depression, consider factors specific to the caregiving situation which affect consequences to the carer, and prescribe psychosocial interventions with the same specificity as medication. However, there is currently a lack of consensus on how carers should be assessed, which interventions are effective at each point in the caring trajectory, and which outcomes are the most meaningful to carers, clinicians and policy-makers. This systematic review aims to identify instruments which measure quality of life in informal carers of people with dementia, and appraise their psychometric properties, in order to recommend which could be most useful to general practitioners in their consultations with carers of people with dementia.

Approach

A systematic review of databases will be undertaken, at present the search strategy is being developed. Hand searching of reference lists and citation searching of key papers will also be undertaken. Following title and abstract and full paper screening, the Consensus-based standards for the selection of health status measurement instruments (COSMIN) approach will be used to critically appraise evidence relating to the measurement properties of the instruments identified. This approach enables analysis of the reliability, validity and responsiveness of instruments. Narrative synthesis will be used to describe results of included studies, and synthesise results on properties for which quantitative data is unavailable e.g. content validity.

Findings

Preliminary findings would be presented.

Consequences

This review will enable recommendations to be made regarding which instrument(s) should be used to assess quality of life in carers of people with dementia in practice, taking account of both the measurement properties of the instruments identified, and the methodological quality of included studies.