Family Quality of Life Survey Adapted for Caregivers of People With Dementia Open Access

RATIONALE: People with dementia and their caregivers experience adverse effects on their quality of life, yet we know little about the impact on the rest of the family and their collective family quality of life (FQOL). Because the family is the primary environment of the person with dementia, it is essential to focus on the family unit in evaluation and treatment. FQOL is a multidimensional construct that ascertains a family’s strengths, challenges, and desires of families. A measurement of FQOL is essential to provide holistic care to a person with dementia.

The 2006 version of the international FQOL survey originally developed for main caregivers of people with developmental disabilities was adapted and modified in 2011 to be used with people with dementia. Therefore our research questions were what is the feasibility of the Family Quality of Life survey (FQOL–2011) in evaluating FQOL of people with dementia, and what are the factors that are strongly associated with their global FQOL?

METHOD: This cross-sectional study gathered prospective data from a convenience sample of 28 primary caregivers of people with dementia. The FQOLS–2011 was used to collect data through a 1- to 3-hr in-person or telephone interview across 10 domains (Health, Finances, Family, Supports [Practical, Emotional, and Services], Values, Careers, Leisure, and Community), using six dimensions (Importance, Opportunity, Initiative, Stability [explanatory dimensions], Attainment, and Satisfaction [outcome dimensions]). Each of these dimensions was measured on a 5-point Likert-type scale.

Domain-level outcomes were computed from the mean scores of the outcome dimensions in each domain, and global FQOL was computed from the mean score of two separate items relating to an overall rating of FQOL and satisfaction.

ANALYSIS: Data were examined at the univariate (descriptive statistics to examine the exploratory and outcome dimensions by domain) and bivariate (correlational analysis to examine associations between domain level outcomes and global FQOL) levels using SPSS Version 22.

RESULTS: The domain-level outcomes of Health, Family Relationships, Values, and Leisure were significantly correlated (rs = .62–56, p < .01) to global FQOL. The domains of Finances, Service Support, and Community Participation were also found to have weaker but significant correlations (rs = .45–.40, p < .05) with global FQOL. However, the domains of Careers and Practical and Emotional supports were not significantly associated with global FQOL. On a dimensional level, the level of initiative varied by the level of importance, in 7 of the 10 domains and by the perception of available opportunities in 5 of 10 domains. Overall, although the FQOLS–2011 appears to be useful to gather data on FQOL from the caregivers of people with dementia, it is necessary to refine this long survey into a more clinically useful tool.

IMPLICATIONS: There is a need to educate families on how to avail existing opportunities for familial leisure and community participation and to better access health and formal services for each member in the family, because these domains were significantly associated with their global FQOL. Our findings highlight the need for occupational therapists to identify ways to provide holistic family-centered care using community-based models of care for people with dementia.