Title

A study of caregiving and persons with developmental disabilities

Date of Award

1998

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Teaching and Leadership

Advisor(s)

Robert Bogdan

Keywords

Elderly, Caregiving, Developmental disabilities

Subject Categories

Family, Life Course, and Society | Geriatrics | Women's Studies

Abstract

Little is known about the desires of older persons with developmental disabilities who are living with their families. Even less is known about the goals and wishes of their older caregivers. A qualitative study of Caregiver Resource Centers, which were designed to provide linkages and supports for older caregivers through offices for the aging or private not-for-profit agencies, was conducted in New York State. Findings indicated that the female caregivers of people with developmental disabilities expected to remain in that role for their lifetime and expected that other female family members would assume the caregiving responsibilities after their death. Additional findings included that the older caregivers had planned for the futures of the persons with developmental disabilities and that their planning did not include the formal service delivery system. In addition, the persons with disabilities in the study contributed to their families and communities. In fact, three of them were actually caregivers for an older family member or friend. Recommendations include the need for further study of the effect of gender expectations on service provision, including caregivers in the planning process for services, and direct flexible funding to families.

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