Aging Together: Caring Relations in Families of Adults With Intellectual Disabilities

Abstract

Purpose of the study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of aging families of community-dwelling adults with ID.

Design and methods: An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were recruited through purposive sampling. In-depth, semistructured interviews were conducted to explore the experience of aging concurrently with a community-dwelling relative with ID. Data were analyzed using a thematic approach.

Results: Three main themes emerged: (a) Recognizing the Changes of Aging, (b) Strengthening Connections, and (c) Planning for the Future.

Implications: Aging concurrently with a community-dwelling relative with ID is a unique experience for older adults and challenges traditional views of familial caring relations. These relationships are characterized by evolving patterns of care and exchange. There is also a sense of urgency to securing future care arrangements for the adult relative with ID. Advanced care-planning is complicated by the adult with ID' understanding of death and dying. Family caregiving policies and practices that take into account the complexities of these relationships are needed.

Keywords: Informal caregiving; Intellectual Disabilities; Life-course perspective; Qualitative research.