What are the support needs of family carers making health care decisions for people with dementia?: a systematic qualitative review and framework synthesis
The problem
Approximately 700,000 people in the UK provide informal care for someone with dementia.1 Dementia is known to be one of the most stressful and difficult conditions to care for.2
As an individual with dementia’s ability to make complex decisions declines, carers are often required to be involved in proxy decision making about health care.
Approach
We conducted a systematic review of qualitative studies which addressed the research question. The review protocol is registered on PROSPERO. Qualitative synthesis followed the structure established by Noblit and Hare.3 ,
The Learning
Support needs of carers fall into 3 established categories which provided a framework for our synthesis4 ; emotional, practical and informational.
Emotional needs include recognition of decision fatigue, the burden of taking responsibility for a loved one’s health and wellbeing, loss of normal support networks and the need for opportunities to share their experiences.
Practical needs include a desire for continuity of care, a preference for empathic guidance from health care professionals and the importance of being encouraged to make advanced decisions whilst the person with dementia has capacity. Health care systems are complex and help to navigate them is important.
Information needs include receiving information that is clear, appropriately paced and timely.
Information about disease trajectory was commonly lacking. Carers also described a lack of awareness of dementia among health care staff
Why it matters
GPs will frequently be in a position to offer support to carers who are involved in making health care decisions for people with dementia. Understanding what the support needs are and how best to meet them could improve outcomes for the carers and the people with dementia.
Presenting author:
Victoria Hodges, Academic Training Fellow, Academic Unit of Primary Care, University of Sheffield
Co-authors:
Samuel Lassa, ACF, Academic Unit of Primary Care, University of Sheffield , S.lassa@sheffield.ac.uk
Catherine Hynes, ACF, Academic Unit of Primary Care, University of Sheffield c.hynes@sheffield.ac.uk
Caroline Mitchell, Senior Clinical Lecturer, Academic Unit of Primary Care, University of Sheffield c.mitchell@sheffield.ac.uk
References
1. https://www.dementiastatistics.org/statistics-about-dementia/prevalence/
2. Prevalence and Impact of caregiving: A detailed comparison between dementia and non-dementia caregivers, Marcia G Ory et al, The Gerentologist Vol 39, No 2, 177-185
3. Noblit G, Hare R. Meta-ethnography: synthesising qualitative studies. Newbury Park, CA: Sage Publications; 1988 'the seven stages' of a meta-synthesis.
4. House J.S. (1981) Work stress and social support. Addison-Wesley, Reading, MA