Date of Award

1999

Degree Name

EdD Doctor of Education

Dissertation Committee

Steven A. Gelb, PhD, Director; Todd Edwards, PhD; Patricia A. Roth, RN, EdD

Keywords

adolescents, Alzheimer's Disease, caregiving, elderly, Ethnography, families & family life, Gerontology, grandparents, Grounded theory, qualitative

Abstract

Caregivers of persons with Alzheimer's disease have been studied extensively; the vast majority of caregiver research has focused on spouses and adult children, negating the impact caregiving has on younger family members. Importantly, 75% of caregivers are female; 31% of these women have children at home under the age of 12 and 23% live with a child aged 12–17. As such, adolescents will be increasingly involved in the care of Alzheimer's victims. This study sought to examine the experiences of these individuals. Specifically, what is it like for an adolescent to provide care for a grandparent afflicted with Alzheimer's disease? A qualitative, grounded theory study design was utilized. Ten adolescents aged 11–18 were interviewed and asked a series of semi-structured questions regarding caregiving. To be included, respondents must have been the grandchild of an Alzheimer's victim cared for by the adolescent's immediate family. Taking into consideration key elements of the ethnographic interview, grand tour, descriptive, structural, and contrast questions were integrated throughout the interview guide. More specific questioning and probing strategies were also designed which explored the perceptions of these adolescents with regard to their rewarding and nonrewarding caregiving experiences. Employing features of content analysis methodology, all interviews were audio-recorded and transcribed verbatim. First, open coding of the data was conducted. Second, selective coding of the data was generated. Using the core variable as a guide, examination of the data for conditions and consequences directly related to the primary category, “Challenging the Continuum of Change,” was further evaluated for similarities and differences across interviews. The subcategories identified via this content analysis process included (a) A Missing Voice, (b) The Changing Family, (c) Coping, and (d) Reaching Out. Conditions falling under these subcategories included: Recognizing the Difference; She's There, She's Not There, Reversal of Blame, Increased Family Intimacy, Loss of Sibling Trust/Sibling Inequality, Parental Conflict, Accepting the Changes, Holding Back Frustrations, Self-Induced Isolation, Confiding in Friends, Altered Leisure Activity, and On Your Best Behavior. Discussion points focus on future research and practice with regard to caregiving adolescents. In short, how can we help these young adults as they challenge the continuum of change and progress through this tenuous phase of their lives?

Document Type

Dissertation: Open Access

Department

Education

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