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People With Early Stage Alzheimer's Disease as Mentors: Developing a Truly Collaborative Research Process


doi: 10.1097/01.ALCAT.0000281874.48097.b3
Well-Being and Being Safe: Finding A Balance

Mentoring can take many shapes and forms. However, rarely in the research arena is the participant of a study ever considered as being a mentor, a person capable of providing advice and guidance, and certainly not a participant who has a diagnosis of Alzheimer's disease (AD). Because of the progressive debilitating nature of the condition and the resulting stigmatization and marginalization of the person, someone with AD is not often thought of in the role of a mentor. Yet, this article focuses on such a mentoring relationship, which developed by happenstance, in the process of doing research on and with people with early stage AD. It discusses how the relationship enhanced the research process and provides some results of a qualitative study that used this approach. It concludes with lessons learned that could be translated into guidelines for research interview protocols that embrace the philosophy that people with AD can be mentors.

Phyllis Braudy Harris, PhD, LISW, ACSW, is Professor and Chair of the Sociology Department and Director of the Aging Studies at John Carroll University, Cleveland, Ohio. Her research is on understanding the psychosocial impact of a dementing illness on family members and persons living with the disease. She has published 2 books, written numerous articles in leading gerontology journals, and has presented nationally and internationally. She is also coeditor of Dementia: The International Journal of Social Research and Practice.

Address correspondence to: Phyllis Braudy Harris, PhD, LISW, ACSW, Professor and Chair, Department of Sociology, John Carroll University, 20700 N Park Blvd, Cleveland, OH 44118. E-mail:

© 2007 Lippincott Williams & Wilkins, Inc.