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http://hdl.handle.net/11375/28295
Title: | Finding Our Say: The Lived Experiences of Young Adults caring for an Older Adult with Alzheimer’s Disease or a Related Dementia (ADRD) |
Authors: | Ward, Jonelle |
Advisor: | Griffin, Meridith |
Department: | Health and Aging |
Keywords: | young caregiver, young adult caregiver, young carer, elder, older adult, gerontology, caregiver, care work, caregiving, dementia, Alzheimer’s, informal care |
Publication Date: | 2023 |
Abstract: | In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. |
URI: | http://hdl.handle.net/11375/28295 |
Appears in Collections: | Open Access Dissertations and Theses |
Files in This Item:
File | Description | Size | Format | |
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Ward_Jonelle_E_finalsubmission2023January_PhD.pdf | 2 MB | Adobe PDF | View/Open |
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