Date of Award

8-2024

Document Type

Campus Access Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Gerontology

First Advisor

Jan Mutchler

Second Advisor

Kathrin Boerner

Third Advisor

Nina M. Silverstein, Susan Bluck

Abstract

Population aging has given rise to a relatively new phenomenon: many retirement-aged adult children are finding themselves providing care and support to their very old parents. The onset of cognitive impairment is common among the very old, which only stands to further complicate this relationship. Very little is known about the experiences of older adult children caring for their very old parents with dementia. Given current treatment options and population aging, it is important to investigate the experiences of those in this burgeoning group, as this situation is likely to become a lot more common in the future. This three-paper dissertation explored challenging aspects of caring for parents with dementia from the unique perspective of children aged 65 and older caring for their parents aged 90 and older with dementia. All three papers utilized data from the Boston Aging Together Study (Boerner, PI). In the first paper, I explored the strategies used by dementia caregivers in response to care recipient behavioral and psychological symptoms of dementia (BPSD). Applied thematic analysis revealed seven strategies used by child caregivers in managing BPSD—including ‘setting the record straight,’ ‘going along with it,’ distracting and redirecting, ignoring, telling ‘fiblets’ or lies, medicating their parent, and altering their physical environment. Overall, there were relatively low rates of co-occurrence; however, the most frequently co-occurring strategies employed by caregivers included ‘setting the record straight’ and ‘going along with it’. In the second paper, I investigated the challenge of relationship conflict between the caregiver and care recipient. More specifically, I was interested in exploring the role of relationship factors in contributing to potentially harmful behaviors by a caregiver, as well as gaining a deeper understanding of the sources of conflict within these relationships. Regression models revealed that poorer caregiver relationship quality was associated with higher levels of PHCB, accounting for caregiver, care recipient, and care environment characteristics. Relationship conflict emerged as the strongest predictor of PHCB. Qualitative analysis revealed that the main sources of conflict included power struggles related to parents’ resistance to assistance and navigating parents’ dementia-related delusions and mistrust. In the final paper, I explored how adult children navigated providing care for their parents with dementia during COVID-19. Applied thematic analysis was used to identify key challenges and positive experiences faced by caregivers and their parents during the pandemic. Challenges included worries related to joint vulnerability to COVID-19, communication, providing care, accessing paid and unpaid support, parent not understanding or practicing regulations around COVID-19, and social isolation. Despite these challenges, the study also identified some positive experiences, including long term care (LTC) facilities handling COVID-19 well, COVID-19 creating more space in life, and experiencing positive emotions related to the pandemic. Overall, this dissertation explored the complexities of three especially burdensome aspects of dementia caregiving: managing BPSD, relationship conflict, and caregiving amidst the COVID-19 pandemic. I outlined how the specific characteristics of older children caring for very old parents with dementia place them at increased risk for experiencing negative outcomes related to each challenge. Findings provide invaluable insight into the context surrounding each of these challenges, in caregivers own words, to advance our understanding of their needs.

Comments

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