Older Caregivers of People with Intellectual and Developmental Disabilities
Despite popular appearances that most people with intellectual and developmental disabilities (I/DD) have lived in institutions or more recently in group homes and a services system emphasis on emancipation from family, families have been and continue to be the core caregiving resource for people with I/DD. In the 1980s and early 90’s a series of studies in the U.S., UK, Ireland and Australia produced a common picture of older caregivers many of whom had mastered their caregiving challenges and were often displaying higher levels of resilience and life satisfaction than their age peers. Yet, those same caregivers were also struggling with the realization that increased longevity for their family member with I/DD, fewer other siblings, and a lack of resources to support new out-of-home placements meant uncertainty about the future given that their son or daughter with I/DD was likely to outlive them.
Several authors voiced concerns about crises in the coming decades for these families, these individuals with I/DD and for service systems and society in general. Twenty years later this presentation will draw upon data from current studies in the U.S., Northern Ireland and the Republic of Ireland to illustrate:
- the current experiences of older caregivers of people with I/DD who are continuing to care in advanced old age,
- the impact of chronic illness and chronic health conditions among caregivers and care recipients
- the arrival of new populations of caregivers, specifically grandparent caregivers and sibling caregivers,
- the greater inclusion in our understanding of caregiving of people with I/DD and caregivers with different ethnicities and different cultural influences
- growing reciprocity in caregiving
- levels of connectedness with service systems
- the meaning of future planning today.
Specifically, quantitative data from the U.S. and qualitative findings in Northern Ireland found that rather than accessing formal services and seeking to place the individual with I/DD, older caregivers were continuing to care at home; a study of 1400 sibling caregivers in the U.S. found that sibling transfers of care are more prevalent than prior studies assumed and Republic of Ireland and Northern Ireland data is for the first time documenting how caregiver chronic conditions are increasing mutuality in caregiving. Data on the changing demographic and policy contexts and emerging services approaches will also be described.
The seminal studies of the 1980’s and 1990’s advocated that stress and coping, risk and resilience, person-centered care and person in environment be the theoretical frameworks to underpin the design of service delivery. Insights will also be offered on the continuing value of these perspectives but current data will also be offered to support the inclusion of Wagner’s Chronic Care Model and consumer-directed perspectives in an overarching, integrative theoretical framework. Finally, there will be specific recommendations on how research findings on the changing experiences of older caregivers of people with I/DD may be applied in the day to day activities of social work practitioners.