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THE LIVED EXPERIENCE OF YOUNG ONSET DEMENTIA

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Date Issued:
2011
Abstract/Description:
Dissertation Title: The Lived Experience of Young Onset Dementia Purpose: The lived experiences of dementia in older persons have been well studied, but the unique experiences of persons between ages 35 and 65 years who are living with young-onset dementia have not been closely examined. The purpose of this research was to explore the experiences of middle-aged individuals' living with young-onset dementia. Methods: van Manen's (1990) approach to interpretive phenomenological inquiry was used to answer the research question. Purposive sampling was used to recruit nine people between 42 and 61 years of age who received a formal diagnosis of mild or early-stage dementia. Semi-structured, conversational interviews were used to gather the data. Consistent with van Manen's method of phenomenological reflection, theme analysis using the selective approach was used to gather the essential meanings of the experience. Results: Six themes were extracted from 19 conversational interviews with persons living with young-onset dementia: feeling frustrated, fear of slipping away, loss of personhood, life interrupted, finding a sense of security in the familiar, and wanting one's voice to be heard. These themes are interpretations of the human experience of living with dementia and are not intended to be generalizations or theoretical concepts. Discussion/Implications: The experiences described in this study raise awareness about young-onset dementia and help health care practitioners and society-at-large develop a better understanding of what it is like to live with the disease. The misperception that people suffering from dementia do not have insight and the underestimation of their abilities is a great source of frustration for these people. Study findings also suggest that middle-age people with dementia want to be involved in meaningful, productive activities. Their resounding plea is to have their personhood embraced instead of negated.
Title: THE LIVED EXPERIENCE OF YOUNG ONSET DEMENTIA.
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Name(s): Hunt, Debra, Author
Aroian, Karen, Committee Chair
University of Central Florida, Degree Grantor
Type of Resource: text
Date Issued: 2011
Publisher: University of Central Florida
Language(s): English
Abstract/Description: Dissertation Title: The Lived Experience of Young Onset Dementia Purpose: The lived experiences of dementia in older persons have been well studied, but the unique experiences of persons between ages 35 and 65 years who are living with young-onset dementia have not been closely examined. The purpose of this research was to explore the experiences of middle-aged individuals' living with young-onset dementia. Methods: van Manen's (1990) approach to interpretive phenomenological inquiry was used to answer the research question. Purposive sampling was used to recruit nine people between 42 and 61 years of age who received a formal diagnosis of mild or early-stage dementia. Semi-structured, conversational interviews were used to gather the data. Consistent with van Manen's method of phenomenological reflection, theme analysis using the selective approach was used to gather the essential meanings of the experience. Results: Six themes were extracted from 19 conversational interviews with persons living with young-onset dementia: feeling frustrated, fear of slipping away, loss of personhood, life interrupted, finding a sense of security in the familiar, and wanting one's voice to be heard. These themes are interpretations of the human experience of living with dementia and are not intended to be generalizations or theoretical concepts. Discussion/Implications: The experiences described in this study raise awareness about young-onset dementia and help health care practitioners and society-at-large develop a better understanding of what it is like to live with the disease. The misperception that people suffering from dementia do not have insight and the underestimation of their abilities is a great source of frustration for these people. Study findings also suggest that middle-age people with dementia want to be involved in meaningful, productive activities. Their resounding plea is to have their personhood embraced instead of negated.
Identifier: CFE0003614 (IID), ucf:48867 (fedora)
Note(s): 2011-05-01
Ph.D.
Other, School of Nursing
Masters
This record was generated from author submitted information.
Subject(s): dementia
young-onset
phenomenology
Persistent Link to This Record: http://purl.flvc.org/ucf/fd/CFE0003614
Restrictions on Access: campus 2016-04-01
Host Institution: UCF

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