Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot Study

Abstract

Introduction: Although individuals with intellectual/ developmental disabilities (I/DD) are living longer than in the past, they also are exposed to age-related changes in health and well-being. They are prone to acquire dementia that often manifests earlier and more frequently than in the general population. However, there is sparse knowledge on the daily challenges that affect the quality of life of the individuals with I/DD and comorbid dementia and their family caregivers. Aim: This pilot study examined strengths and challenges of individuals with dual diagnoses of I/DD and dementia using the family quality of life (FQOL) framework. Method: Cross-sectional data was gathered from a convenience sample of family caregivers using a web-based electronic survey. Results: The variables of interest in this study were the levels of importance and satisfaction attributed to the nine FQOL domains, and overall FQOL. The mean level of importance was higher than the associated ratings of satisfaction in eight of the nine domains, with an overall importance mean of 4.15 and satisfaction mean of 3.28. Analysis of the open-ended comments indicated that the negative impact of social isolation, compound caregiving, and dynamically changing caregiving needs on overall FQOL was balanced by participants’ values and beliefs. Implications for Practice: The discrepancies in the FQOL domains pertaining to formal and informal services and social supports elucidate a need to empower families with high caregiving needs through research, practice and policy. Conclusions: Providers should be cognizant of the needs of individuals with I/DD and dementia comorbid, as well as the needs of their family caregivers.