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

Abstract

People living with intellectual/ developmental disabilities (I/DD) have functional limitations in at least three of the following major life domains of self-care, language, learning, mobility, self-direction, independent living capacity, and economic self-sufficiency, with early onset before the age of 22 years (U.S. Code at 42 USC 15002). As people with I/DD live longer their life expectancy is expected to mirror that of the general population (Coppus, 2013). For example, the life expectancy of individuals with Down syndrome has increased drastically from about 10 years in the 1950s, to 25 years in the 1980s, 35 years in the 1990s, and a current median age of almost 60 years (Bayen et al., 2018; Englund et al., 2013; Hithersay et al., 2019; Yang et al., 2002). However, the increasing life expectancy of people with I/DD poses additional age-related health declines such as dementia (Heller, 2019).