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Empowering Children in Younger-Onset Dementia Families to Tell Their Stories: An Example of Narrative Research and Analysis

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By: & Published: 2017 | Product: SAGE Research Methods Cases in Health
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Abstract

In 2009, as part of our work evaluating a supportive intervention for family caregivers of persons with Alzheimer’s disease and related dementias, we encountered a family with a father diagnosed at age 46 who at the time had a daughter aged 11 and a son aged 7. The children had unique anxieties and fears—a father who was acting in confusing ways and was unable to parent, coupled with worries that they, too, would develop Alzheimer’s disease at a young age. We searched the literature for information about how best to support these children and found nothing at the time. This compelled us to design and implement a research study exploring the question: What are the experiences and needs of children in younger-onset Alzheimer’s disease or other dementias families and what impact does this diagnosis have on these children’s academic, physical, emotional, psychological, and social development? In this case study, we describe our use of narrative research and analysis to answer this question and provide examples of the rich, in-depth material provided by well-parents and children in younger-onset Alzheimer’s disease or other dementias families that help us answer the research question and move beyond that to developing programs and services to provide appropriate support.

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