Ageing together : exploring the dynamics of older families who have an adult member with an intellectual disability

Abstract

This study explores the relationship between people living with intellectual disability (ID) and their caregivers and how it affects their daily life. It also seeks to determine whether older caregivers and their relatives living with ID are faced with any challenges or supporting factors in their social environment. The study also sheds light on the needs of older caregivers, their evolving roles, and the way this impacts their wellbeing. A qualitative research approach was adopted, using a conceptual framework based on the social model of disability and the social relational model. Wherever possible, emancipatory principles were applied throughout the research process. A total of eight semi-structured interviews were conducted. The generated data was analysed using thematic analysis. The following themes were elicited: (a) the dynamics of caregiver relationships and interpersonal interactions among adults living with ID; (b) understandings of how social constructs affect caregivers and the care recipients; and (c) perspective on one’s freedom of choice and right to independence. Other recurrent themes include (d) perspectives on the future held by older caregivers and their relatives living with an ID, (e) the pandemic’s impacts on their social life, and (f) the evolving interdependence between family members. One of the main findings was that, as participants living with ID age, their parents, and siblings—who are primarily women—continued to care for them and developed interdependent relationships with them. Moreover, the caregivers identified social barriers that made their caregiving situations more challenging; for example, lack of resources and inadequate support to make future plans. Finally, this study’s conclusions call for the implementation of more relevant services to fulfil the needs of older carers as well as their relatives who have ID and are ageing in place.