Factors that Affect Quality of Life from the Perspective of People with Dementia: A Metasynthesis

• Published in: Journal of the American Geriatrics Society (JAGS) Vol. 63; no. 1; pp. 24 - 38
• Main Authors: O'Rourke, Hannah M., Duggleby, Wendy, Fraser, Kimberly D., Jerke, Lauren
• Format: Journal Article
• Language: English
• Published: United States Blackwell Publishing Ltd 01.01.2015; Wiley Subscription Services, Inc
• Subjects: Aging - physiology; Dementia; Dementia - physiopathology; Dementia - psychology; Humans; metasynthesis; Older people; patient perspectives; Qualitative research; Quality of Life; Studies; systematic review; dementia; patient perspectives; quality of life; systematic review; metasynthesis
• ISSN: 0002-8614; 1532-5415
• DOI: 10.1111/jgs.13178

Objectives 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 s 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.