Impact on informal caregivers of caring for those with early onset dementia
Rinfrette, Elaine S.
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Trauma and its aftermath are the result of many experiences. Early-onset dementia (EOD) and other dementias are devastating to the affected person and to his or her family members (Alzheimer’s Association, 2006). Through the use of phenomenological research methods, this dissertation explored the lived experience of caregivers who provide care to those with EOD. Purposive sampling was used to recruit 20 participants who were interviewed by telephone, email correspondence, and face-to-face meetings. Interviews included open-ended questions and quantitative measures. Relevant statements that contributed to the development of themes were identified and three themes were revealed: diagnostic issues (e.g. fear of changes, diagnosis long in coming), psychological issues (e.g. lethality and depression, helplessness), and caregiver role issues (e.g. advocacy, end-of-life decisions). In addition, results revealed that many caregivers experienced anticipatory trauma, symptoms of post-traumatic stress disorder, and post-traumatic growth. Finally, participants identified changes professionals could make that would be helpful to them. The findings from this study can help social workers support caregivers in the unique challenges they encounter in caring for those with EOD. Key words. early-onset dementia, caregivers, trauma-informed care, lived experience.