Aging with intellectual and developmental disabilities: the effect of frailty and health instability in home care users on admission to long-term care

Abstract

BACKGROUND: An increasingly large proportion of adults with intellectual and developmental disabilities are frail. Measuring frailty is challenging, and generic measures of frailty inaccurately identify frailty in this population. In the general population, frailty reflects an increased risk of outcomes, including admission to long-term care. Institutionalization of adults with intellectual and developmental disabilities may be a reflection of high levels of frailty. OBJECTIVES: 1) To develop a frailty index for home care users with intellectual and developmental disabilities using Ontario standardized clinical assessment data, 2) to describe the prevalence of frailty among these adults, and 3) to determine the association between frailty and admission to long-term care. METHODS: A frailty index was developed using published criteria to select items from the Resident Assessment Instrument-Home Care. Assessments of 7,863 individuals with intellectual and developmental disabilities in Ontario (aged 18-99 years) provided the data. A comparison measure of health instability, the Changes in Health, End-stage disease, Signs and Symptoms scale, identified individuals as stable or unstable. Using a subset of this sample (n=3,034) retrospectively followed over four years, survival analyses determined differences in rates of admission to long-term care according to frailty and instability. RESULTS: The frailty index combined 42 deficits from five domains of health (physiological, psychological, cognitive, social and service use). Almost half of the cohort was pre-frail (21%) or frail (27%). In the 4-year follow-up, 22% of the sample was admitted to long-term care. Adjusting for age, sex, rural status, caregiver status, living situation, and cognition level, at any given time, frail individuals were twice as likely to be admitted to long-term care compared to non-frail individuals. CONCLUSIONS: The frailty index is developed from items currently incorporated into home care assessments, and can predict institutionalization in adults with intellectual and developmental disabilities. Further research should evaluate the feasibility of implementing this measure.