Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review.

Objective: The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.

Introduction: Currently 47 million people in the world have a diagnosis of dementia, and this number is predicted to climb to 75 million by 2030. The majority of care is provided by family members, particularly spouses/partners. Quantitative systematic reviews of spouse/partner caregivers demonstrate negative health effects for these caregivers. This review synthesized the qualitative evidence on the experiences of spousal/partner caregivers of people with dementia to further understanding how this care and the context of care contribute to the health and well-being of spousal/partner caregivers.

Inclusion Criteria: This review considered qualitative studies that explored the experiences of spousal/partner caregivers providing care for adults with dementia. The focus was on qualitative designs including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical research and feminist research.

Methods: The search strategy used a three-step approach and was aimed at locating both published and unpublished studies. Key databases included MEDLINE, CINAHL, Embase, PsycINFO, Sociological Abstracts, ISI Web of Science, and Dissertation Abstracts International. Gray literature was searched using keywords from the database searches. The databases were searched from inception to February 2017, and a mix of controlled vocabulary (i.e. MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences and perceptions of spousal/partner caregivers providing unpaid care for adults with dementia. During the title and abstract screening, only English and French articles were included. The recommended JBI approach to study selection, critical appraisal, data extraction and data synthesis was used. Seven of the 10 critical appraisal criteria were deemed essential, with exceptions identified for criteria 1, 6 and 7.

Results: Nineteen studies were included in the review. Study designs included phenomenology (eight), grounded theory (five), qualitative description (four), ethnography (one) and narrative inquiry (one). The total number of participants was 248 (164 women and 84 men). The overall quality of the studies was rated as moderate on the ConQual score, with dependability rated as moderate and credibility rated as high. One hundred and fifty-five findings were aggregated into four categories and two synthesized findings. The two synthesized findings were "the expectation to care in the midst of uncertainty and unpredictability" and "the caregiver as hostage".

Conclusions: This review provides a comprehensive understanding that can inform spousal/partner caregiver policies and programs. Evidence is required on the experiences and perceptions of caregivers across the gender continuum. Interventions and interventional research that mobilizes the evidence to date is essential for the future of caregivers. The limitations to this review include the possibility of missed studies, all study participants being in heterosexual relationships, and the majority of participants being Caucasian. Recommendations for practice, policy and research include the need for awareness of the extent of change in the lives of the person with dementia and the spousal/partner caregiver, the importance of support and respite, the need to tangibly recognize the value of the unpaid caregiver in a way that preserves the health and well-being of this group, and research is required that is culturally sensitive and reflects the experiences of the lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, pansexual populations.