Katherine McKenzie

Frailty as a Predictor of Institutionalization Among Adults With Intellectual and Developmental Disabilities

Adults with intellectual and developmental disabilities (IDD) frequently become frail earlier than the general population, resulting in higher care needs. This population is at risk for institutionalization, or re-institutionalization, into long-term care (LTC). Using a retrospective cohort design to follow 3,034 individuals (18-99 years) living in Ontario, Canada, and assessed with the Resident Assessment Instrument-Home Care, individuals were characterized with a frailty index (FI) for persons with IDD. Survival analyses determined differences in rates of admission to LTC and survival in the community. Frail individuals had greater rates of admission than non-frail individuals, adjusted HR = 2.19, 95% CI [1.81, 2.64]. The FI predicts institutionalization.

Frailty and Intellectual and Developmental Disabilities: a Scoping Review

Background Individuals with intellectual and developmental disabilities (IDD) are both living longer than in previous generations and experiencing premature aging. Improved understanding of frailty in this aging population may inform community supports and avoid negative outcomes. Methods The objective of this study was to review the literature on frailty and IDD and determine areas for future research and application. The methodological framework for a scoping review as developed by H. Arksey and L. O’Malley was applied to identify and select original studies published since 2000. Results Seventeen studies were identified; these were based on the work of researchers from four research programs. The studies utilized six measures of frailty, including two frailty indices, the VFQ-ID(-R), the frailty phenotype, and the frailty marker. Frailty was equally studied as an outcome and as predictor for other outcomes (e.g., mobility, falls, care intensity, institutionalization, and survival). Conclusions There is evidence of a growing interest in the measurement of frailty in aging adults with IDD. As in the general population, frailty in this group is associated with many negative outcomes. While a few measures have emerged, more work is required to replicate results, validate tools, and test the feasibility of applying frailty measures in practice and to inform policy.