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Living With Early Onset Dementia: Exploring the Experience and Developing Evidence-based Guidelines for Practice

Harris, Phyllis Braudy PhD, LISW, ACSW; Keady, John PhD, RMN, Cert Hed, RNT

Feature Topic: Making the most of the day: Quality of life and Meaningful Activity

In contemporary society dementia is socially, culturally, and professionally constructed as an older person's disease. And although the formal definition of dementia has changed over time, its correlation with the aging process has not. Yet, as both clinical contact and the emerging literature base reveal, people younger than 65 years are also diagnosed with this condition. Drawn from encounters with younger people with dementia in the United States (N = 23) and families of younger people with dementia in the United Kingdom (N = 15), this article combines the data sets to explore both sides of the experience and the unique struggles that this group encounters. Qualitative analysis of the data has resulted in the generation of 8 inductively generated themes, namely (1) difficulties in obtaining a diagnosis; (2) issues of self-hood and self-esteem; (3) changing relationships within the family structure; (4) awareness of changes in self; (5) workforce and retirement/financial issues; (6) feelings of extreme social isolation and exclusion; (7) “off-time” dependency; and (8) lack of meaningful occupation. Using the themes as a heuristic device, the article concludes with 2 sets of evidence-based guidelines that are grouped around the issues of assessment and treatment.

Professor of Sociology 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. (Harris)

Senior Lecturer in Nursing Research at the School of Nursing, Midwifery and Health Studies, University of Wales, Bangor, Gwynedd, United Kingdom. He is also visiting Professor at Northumbria University, Newcastle-upon-Tyne. His main research interests are the early experience of demetia and the role of nursing in dementia care. (Keady)

The US research on which part of this study is based was supported by grants from The Cleveland Foundation and John Carroll University. The author (PBH) gratefully acknowledges the support and assistance of the Cleveland Area Alzheimer's Association and the Dementia Advocacy and Support Network International (DASNI). Both researchers thank all the participants in North Wales, Cleveland, Ohio, and the DASNI members for giving their time and permission to be interviewed.

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

©2004Lippincott Williams & Wilkins, Inc.