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Learning Objective 1: Identify and evaluate personal bias towards people with dementia.
Learning Objective 2: Explore strategies for developing and evaluating age-specific resources for people with young-onset dementia.
Purpose: The lived experiences of dementia in older adults have been well studied. However, the unique experiences of middle-age adults living with dementia have not been closely examined. Particularly missing is the perspective of affected individuals. This qualitative study explored the experience of living with young-onset dementia.
Methods: van Manen’s (1990) method of interpretive phenomenology guided this inquiry. Using purposive sampling, nine persons with a formal diagnosis of young-onset dementia were recruited. Participant criteria included the ability to read, write and speak English, the ability to reflect on their illness, and score less than five errors on the Short Portable Mental Status Questionnaire (Pfeiffer, 1975). Geography was not a criterion as participants could live anywhere in the United States. Data were collected through 19 in-depth conversational interviews. Ongoing reflective analysis of interview data was used to guide sampling and data collection. All transcripts were transcribed verbatim. IRB approval was obtained.
Results: All nine participants were able to make the initial contact with the PI either via telephone or e-mail. They were able to describe and reflect on the experience of living with dementia. Participants spoke of the challenges they faced when dealing with a health care community that refuses to acknowledge their personhood and value by excluding them from discussions about their illness and health care needs. Five themes were identified: feeling frustrated, fear of slipping away, loss of personhood, finding a sense of security in the familiar, and wanting one’s voice to be heard.
Conclusion: Persons living with young-onset dementia feel invisible in their dealings with health care providers. By listening to the experiences of people with dementia we empower them. They are eager to contribute to the knowledge about young-onset dementia in order to help identify the earliest symptoms and diminish the stigma associated with the illness.
See more of: Research Sessions: Oral Paper & Posters