To comprehensively and systematically identify, appraise, and synthesize qualitative research findings on factors that affect quality of life from the perspective of people with dementia.DESIGN:
Systematic review and metasynthesis of primary qualitative studies in published and gray literature that aimed to identify factors that influence quality of life from the perspective of people with dementia. Expert-developed search strategies were applied in nine electronic databases. Reference lists of included articles and literature reviews identified during the search were reviewed. Structured inclusion criteria were applied to screen 5,625 titles and abstracts to identify 11 qualitative studies published from 1975 to April 2012. Two independent reviewers appraised study quality.SETTING:
Primary study recruitment sites included long-term care and community-based settings in the United Kingdom, the United States, Canada, the Netherlands, Ireland, Australia, and Japan.PARTICIPANTS:
A combined sample of 345 people with mild, moderate, and severe dementia.MEASUREMENTS:
The primary studies used interview and focus group methods. Findings from primary studies were synthesized using techniques of taxonomic analysis, constant comparison, and importing concepts.RESULTS:
Four factors and the experience of connectedness or disconnectedness within each factor influenced quality of life according to people with dementia. These factors, and the terms that represent connectedness and disconnectedness, were relationships (together vs alone), agency in life today (purposeful vs aimless), wellness perspective (well vs ill), and sense of place (located vs unsettled). Happiness and sadness were key outcomes of good and poor quality of life, respectively.CONCLUSION:
The four factors identified potentially modifiable areas to improve quality of life for people with dementia, even in the context of worsening cognitive function.