Advisor(s)

Joan Fitzgerald

Contributor(s)

Debra Kaufman, Maureen Kelleher

Date of Award

2012

Date Accepted

5-2012

Degree Grantor

Northeastern University

Degree Level

Ph.D.

Degree Name

Doctor of Philosophy

Department or Academic Unit

College of Social Sciences and Humanities, School of Law and Public Policy

Keywords

public policy, sociology, Alzheimer's disease, caregivers, community, Dementia, Molly Perdue, Olmstead

Disciplines

Health Policy | Public Policy | Sociology

Abstract

Due to a lack of formalized long-term care options in the community, dementia care for people living at home is primarily the responsibility of informal family caregivers. This informal family care goes unnoticed; the provision of informal care is "invisible" because the real work of family caregiving takes place in our most intimate and private of places, our homes. This dissertation utilized ethnographic methods to examine the real-life experiences of family caregivers providing dementia care in the community, and examined the applicable laws and long-term care policies and supports.

The U.S. Supreme Court's 1999 Olmstead decision reinforced the right of people with cognitive impairments to be in as integrated a setting as possible for as long as they may safely do so with the necessary supports. Family caregivers are, in a myriad of ways, the "necessary supports" for their family members with dementia.

Because family caregivers provide a beneficial and cost-effective means of meeting the requirements set forth in the Olmstead decision, the provision of community care should be the subject of high-priority policy supports.

The findings of this research demonstrated significant caregiver burdens experienced by caregiver study participants caring for a family member with dementia in the community. Despite evidence of significant financial, social, physical, and emotional burden, my findings showed caregivers demonstrated a firm commitment to keeping their family members in the community; additionally, they expressed the desire to delay the institutional placement of their family member with dementia for as long as possible. This exploration of the culture of family caregiving in the context of the community expands our current knowledge of informal family caregiving and offers suggestions for policy to better support families in this situation.

Document Type

Dissertation

Rights Information

copyright 2012

Rights Holder

Molly Perdue


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