Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Social Work

Faculty/School

Lyle S. Hallman Faculty of Social Work

First Advisor

Peter Dunn

Advisor Role

Dissertation Supervisor

Abstract

This case study explores the qualitative experience of 4 consumers with a dual disability living in a home specializing in dementia support. Drawing insights from participant observation, daily living log notes, and interviews with 4 each of family/friend caregivers, direct-care staff, and administrators, the study has 3 main goals: (i) to understand how the onset of dementia in people with an intellectual disability changes their needs, what adjustments have to be made in the support practices, and what service barriers and successes are experienced; (ii) to understand how people with dual disabilities experience living in a home specializing in dementia support and how stakeholders perceive this model of support; and (iii) to identify ways policymakers can better respond to the changing needs of people with dual disabilities.

The findings of the study identify two social processes; one of marginalization and the other of supported empowerment. The process of marginalization depicts how dementia affects people with intellectual disabilities as they incur multiple losses in ability, home, and community. In spite of losses, the data illustrate how these individuals maintain their selfhood with good health support, decision-making, self-agency, and autonomy. Further, a home of choice with an individualized transition process, consistent and person-centered support, and elevated empathy facilitate their freedom of choice. Engaging the self in community, both inside and outside the home, is emphasized. The findings are contrasted with divergent perspectives on support practices and barriers in providing empowering support to consumers living in the home.

The study generates a theory of supported empowerment grounded in the data. This theory yields an empowering social model and micro-practices that harness elements of empowerment necessary to support people with dual disabilities. Seven policy considerations that prevent premature placement in nursing homes, enable aging in place, and maintain a participatory life in community are recommended from insights gained. Several research implications are raised by this study, notably, inclusive research methodologies to access the voice of people with a dual disability, caregiver support, inclusive community participation, the benefits of social versus medical models of long-term support, and personhood created in quality of lives.

Convocation Year

2008

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