Current Status and Future Directions in Family Caregiving and Aging People with Intellectual Disabilities

In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 1, Heft 1, S. 24-30

Abstract

Abstract Family caregiving is increasingly recognized as an important clinical and public policy issue across diverse age groups, and for care recipients with varying physical and mental impairments. While families provide extensive care for aging individuals with intellectual disabilities (ID), family issues directly related to the aging of persons with ID have been understudied. We review major findings in the broader literature on the impact of family caregiving on the caregiver, and the existing research on aging, caregiving, and ID. Aging caregivers for people with ID may be at special risk because of age‐related health and behavioral declines in the aging care recipient and caregiver, the extensive duration of the caregiving role, and concerns about the long‐term care of the care recipient. Balancing these concerns are the normative nature of parental caregiving, and expertise and sense of mastery possibly gained by long‐term caregivers, which may serve to offset the wear and tear of years of caregiving and additional strains of aging. Topics deserving greater attention in future research on caregiving, aging and ID include longitudinal studies of caregiver adaptation, racial/ethnic diversity issues, and assessment of the mental health, physical health, social, and economic impacts on caregivers compared with non‐caregiving age‐matched controls. Intervention studies are also needed to identify evidence‐based interventions to support family caregivers.