Support needs of carers making proxy healthcare decisions for people with dementia : a systematic review based on the Noblit and Hare meta-ethnographic synthesis of qualitative studies

Background: There are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.

Understanding the support needs of carers acting as proxy healthcare decision makers will be vital in improving the decision making process for people with dementia and addressing the holistic needs of carers.

Objective: The objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision makers for people with dementia.

Design: A qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme (CASP) checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third order constructs.

Data Sources: A search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO).

Eligibility criteria: Fifteen studies met the inclusion criteria: Primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions.

Data extraction and synthesis: Two independent researchers conducted validity assessments for each paper selected for inclusion and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team.

Results: From the 15 papers included in the study three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person centred care and the use of legal frameworks.

Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner.

Conclusions: This meta-ethnography highlights opportunities for health care professionals and policy makers to improve experiences of carers making proxy healthcare decisions for people with dementia.

Strengths and Limitations of this study:

To our knowledge this is the first systematic review to focus on the experience of proxy healthcare decision making for carers of people with dementia.

By translating results of multiple studies, we make the results more readily available to practitioners, policy makers and researchers.

Although there was a comprehensive search strategy with inclusion of international papers, the study did not include non-English language publications.

Studies may also have been missed due to the variety of terminology used in this field.

Funding Statement: This work was supported by The RCGP Scientific Foundation Board, grant number SFB2018-07