Caring for the caregiver: exploration of sibling connection and social support in relationships of adult siblings caring for aging parents with dementia

UNCG Author/Contributor (non-UNCG co-authors, if there are any, appear on document)
Megan M. Seaman (Creator)
The University of North Carolina at Greensboro (UNCG )
Web Site:
James Benshoff

Abstract: There is a growing population of aging parents with dementia and subsequent obligations of adult children to provide care for them. Approaches to helping adult siblings care for their parents are centered on primary caregiver network models that overly focus on instrumental support and the integration of formal care into the system of dementia caregiving. Unfortunately, models that exist do not address the unique caregiving sibling connections or social support that are perceived and experienced in the dementia care system, which may prove more beneficial than instrumental assistance in helping family caregivers. To address the gaps in dementia care literature and practice, this dissertation study explored the perceptions and experiences of sibling connections and social support between adult siblings caring for their aging parents with dementia. The current study involved interviews with five sibling dyads of families living in the Midwest who were in the process of caring for a parent with dementia. Ten siblings (two from each family) completed demographic questionnaires and independently participated in semi-structured interviews about their experiences and perceptions of dementia care, including their perceived social support and sibling connection. In cross-family analysis, four superordinate clusters and 18 superordinate themes were found in participants' narratives. Results of this study confirm the importance of examining dementia concerns and providing assistance and resources from a systemic and contextual paradigm to adult siblings who are caregiving for a parent with dementia, rather than working from a primary caregiver network model. Additionally, instead of medical and instrumental tasks taking the forefront of support in dementia caregiving, providing different levels of mental and emotional social support seemed to be most important in balancing the dementia caregiving system. Moreover, cultural guides related to ethnicity, religion, and generational differences proved to be important in helping caregivers deal with and understand their parents' cognitive decline. Findings from this study support an expanded way of helping and understanding adult sibling dementia caregivers' experiences and perceptions of sibling connections and social support from a family systems/ecological model. Keywords: adult siblings, aging parents, dementia caregivers, caregiving, cognitive decline, dementia, ecological systems, eldercare, familial care, family systems, filial care, formal care, interpretive phenomenological analysis, phenomenology, qualitative research, sibling connection, sibling relationships, siblings, social support.

Additional Information

Language: English
Date: 2015
Adult siblings, Dementia, Family caregivers, Interpretive phenomenological analysis, Sibling relationships, Social support
Adult children of aging parents $x Family relationships
Dementia $x Patients $x Care
Caregivers $x Family relationships
Brothers and sisters $x Family relationships
Caregivers $x Social networks

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