Article Synopsis

by Christine Trefethen
Harris, P.B., Keady, J. (2004) Living with early onset dementia: Exploring the experience and developing evidence-based guidelines for practice. Alzheimer’s Care Quartely, 5(2), 111-122.

The article “Living with Early Onset Dementia: Exploring the Experience and Developing Evidence-based Guidelines for Practice” by Phyllis Braudy Harris and John Keady was published in the April/June, 2004 issue of Alzheimer’s Care Quarterly. This article details one of the few studies that have been conducted to explore the experiences of people under the age of 65 who have been diagnosed with dementia. The authors pose and answer two research questions:

1. What are the unique challenges that persons with younger-onset dementia and families face from their perspectives?

2. Grounded in this experience, what are some evidence-based guidelines for practice with this population? (p. 113)

The authors conducted in-depth interviews with 23 people diagnosed with early onset dementia and 15 caretakers of people diagnosed with early onset dementia. The interviews were then transcribed and analyzed to discover prevalent themes among the narratives. The researchers identified eight themes common to persons with early onset dementia and their caretakers. The themes were:

(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) work-force and retirement/financial issues;

(6) feelings of extreme social isolation and exclusion;

(7) “off-time” dependency; and

(8) lack of meaningful occupation. (p. 114)



The article examines each of these themes individually and offers quotes from the participants to describe the personal experience and impact of living with early onset dementia. The perspectives of the participants highlight the unique difficulties and struggles faced by a young person with dementia and young caretakers of those with dementia such as “obtaining a proper diagnosis, changing family roles and relationship, workforce and retirement issues, and feelings of social isolation” (p. 120).

Based on the data gathered from the interviews, the authors developed evidence-based guidelines for health care providers working with persons with early onset dementia and their families. Addressing both assessment and intervention, these guidelines focus on the unique nature of early onset dementia, the impact of dementia on the entire family, and ways in which health care providers can support young people with dementia and their families.

The qualitative nature of this study makes the article relevant and understandable for both practitioners and families. By using the words of persons with early onset dementia and their caretakers, the authors create a vivid picture for the reader of the experiences and struggles of those diagnosed with early onset dementia.