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THE LIVED EXPERIENCE OF YOUNG ONSET DEMENTIA
Title
THE LIVED EXPERIENCE OF YOUNG ONSET DEMENTIA.
Creator
Hunt, Debra, Aroian, Karen, University of Central Florida
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...
Show moreDissertation 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.
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Date Issued
2011
Identifier
CFE0003614, ucf:48867
Format
Document (PDF)
PURL
http://purl.flvc.org/ucf/fd/CFE0003614
YOUNG ONSET DEMENTIA: THE CHILD'S EXPERIENCE WITH COPING
Title
YOUNG ONSET DEMENTIA: THE CHILD'S EXPERIENCE WITH COPING.
Creator
Zeher, Jamie, Loerzel, Victoria, University of Central Florida
Abstract / Description
Young onset dementia (YOD) affects not only the person diagnosed, but the family unit as a whole. It is estimated that as many as 500,000 people in the United States have YOD and around 250,000 children are involved in caring for these people. A child of a parent with YOD can begin to experience negative effects when the child begins to take part in caregiving for the person with young onset dementia (PWYOD). Feelings of stress, anger, fear of the future, depression, social isolation, and...
Show moreYoung onset dementia (YOD) affects not only the person diagnosed, but the family unit as a whole. It is estimated that as many as 500,000 people in the United States have YOD and around 250,000 children are involved in caring for these people. A child of a parent with YOD can begin to experience negative effects when the child begins to take part in caregiving for the person with young onset dementia (PWYOD). Feelings of stress, anger, fear of the future, depression, social isolation, and increasing responsibility of caring for the PWYOD can be felt by children as caregivers. Research shows that children of people with YOD have reported an extreme lack of support and decreased communication within the family. The purpose of this thesis was to examine current interventions designed to improve coping for children of parents with YOD. A review of literature using CINAHL, Medline, and PsychINFO was conducted to gather peer-reviewed articles and journals relating to interventions to help children of parents with YOD cope. However, no studies have discussed interventions specifically for the child. Therefore, information was pulled from 5 studies regarding what children of people with YOD feel has helped them, in their respective experiences, to deal with the stresses of a parent with YOD. Research suggests that individualized care should be provided for these children based on: age, developmental stage, and experience. Children have reported that they cope by spending time away from the home, participating in extracurricular activities, and spending time with friends. Clear communication by all members of the family is also reported to be vital in easing the stresses of caring for a parent with YOD. While children have developed these coping mechanisms, interventions need to be formally designed and their effect on improving coping examined. Analyzing the experiences of the children with parents with YOD is necessary for clinicians to gain insight into what interventions worked for this population, and what interventions need to be created for further and more individualized support.
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Date Issued
2013
Identifier
CFH0004405, ucf:45147
Format
Document (PDF)
PURL
http://purl.flvc.org/ucf/fd/CFH0004405