Understanding the Quality of Life Impacts of Providing Informal Care to People with Dementia: A Systematic Review of Qualitative Studies

Article type: Systematic Review

Authors: Mohamad Asfia, Siti Khadijah Binti^a | Bucholc, Jessica^a | McCaffrey, Nikki^a | Mihalopoulos, Cathrine^{a; b} | Muldowney, Anne^c | Engel, Lidia^{a; b; *}

Affiliations: [a] Deakin University, Institute for Health Transformation, Burwood, VIC, Australia | [b] Monash University, School of Public Health and Preventive Medicine, Melbourne, VIC, Australia | [c] Carers Australia, Turner, ACT, Australia

Correspondence: [*] Correspondence to: Lidia Engel, PhD, Monash University, School of Public Health and Preventive Medicine, Level 4, 553 St. Kilda Road, Melbourne, VIC 3004, Australia. E-mail: [email protected].

Abstract: Background:There is currently a lack of a comprehensive review identifying the broad scope of factors that impact quality of life (QoL) of informal carers of people with dementia in order to validate existing measures and inform the provision of support services for carers of people with dementia that impact QoL domains important to them. Objective:To explore and identify QoL impacts on informal carers from providing care to people with dementia. Methods:A systematic review was conducted across four databases: EMBASE, CINAHL, PsychINFO, and Medline. Eligible studies consisted of published, peer-reviewed, qualitative studies focusing on lived experiences of informal carers of people with dementia. Non-English studies and quantitative studies were excluded. Screening of included studies was conducted independently by three reviewers. A “best-fit” framework synthesis was used to combine the qualitative data, applying deductive and inductive analysis techniques. Quality assessment was conducted using the Critical Appraisal Skills Programme. Results:Of the 4,251 articles identified, 59 articles were included. Five main themes pertaining to QoL aspects were identified that included coping (emotion-coping and problem-coping), relationship with the person with dementia (sense of loss and change in relationship), support (formal support and informal support), interference with life (control over caring situation, and freedom and independence), and health (physical health, emotional and mental health, and social health). Conclusion:This study identified domains of QoL that are impacted by providing informal care to people living with dementia, offering a conceptual framework for instrument validation and development as well as guidance for service provision.

Keywords: Caregivers, dementia, qualitative research, quality of life, review

DOI: 10.3233/JAD-220219

Journal: Journal of Alzheimer's Disease, vol. 88, no. 4, pp. 1293-1309, 2022