Dementia, Middle aged persons, Phenomenology


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 the research was to explore the experiences of middle-aged individuals living with young-onset dementia. Van Manen‘s (1990) approach to interpretive phenomenological inquiry was used to answer the research question. Purposive sampling was used to recruit 9 people between 42 to 61 years of age who had received a formal diagnosis of mild or early-stage dementia. Participants were prescreened for the ability to reflect on their illness and the Short Portable Mental Status Questionnaire (SPMSQ) was used to verify the participant‘s eligibility. 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 grasp the essential meanings of the experience. Each participant was interviewed a minimum of two times. 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. 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. iv 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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Graduation Date





Aroian, Karen


Doctor of Philosophy (Ph.D.)


College of Nursing








Release Date

April 2016

Length of Campus-only Access

5 years

Access Status

Doctoral Dissertation (Open Access)


Dissertations, Academic -- Nursing, Nursing -- Dissertations, Academic

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