The Perspective of Younger People with Dementia

Abstract

ABSTRACT Dementia is socially defined as an old person's disease. And although the definition of dementia has changed over time, its correlation with the aging process has not. Yet, there are younger people diagnosed with dementia, early on-set dementia, people diagnosed below the age of 65. This study focuses on two specific research questions concerning this population: (1) Is being diagnosed with a dementing illness at a younger age a unique experience? and (2) Is it necessary to have specifically designed guidelines and services to meet the needs of these younger individuals? Rarely are younger people with dementia directly asked questions, conclusions are based mainly on the perspectives of health care professionals and family members. Twenty-three in-depth interviews focusing on the subjective experience of younger people with dementia were conducted. The data were gathered through face-to-face or on-line interviews, and focus group. From this research, eight common themes were identified, such as: trouble obtaining a proper diagnosis, marginalization, changing relationships within the entire family structure, work/force/retirement issues, off time dependency, lack of meaningful occupation, issues of self-esteem, and awareness of changes in self. Preliminary evidence-based guidelines for practice with this population were identified, as well as guidelines to consider regardless of age of on-set.