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Alzheimer's Care Quarterly:
Feature Topic: Making the most of the day: Quality of life and Meaningful Activity

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

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Abstract

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.

©2004Lippincott Williams & Wilkins, Inc.

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