The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.

KEYWORDS:

• caregivers
• carers
• dementia
• quality of life (QOL)

Acknowledgements

With thanks to the May 2016 Research Project in Health Psychology cohort for contributing to the discussions around suitable search terms: Mai Morsi, Keith Watkins, Keith Gage, Jaqueline Cameron-Mathiasson, Shama Abbas and Refilwe Tselapedi.

Disclosure statement

The authors have no financial interest or benefit that has arisen from the direct applications of this research.

The underlying research materials for this article can be accessed at 10.1080/08870446.2018.1496250.