Communicating dementia caregiving support needs : how stigma and support seeking by dementia family caregivers relate to network support and caregiver health




Schlag, Karen Elizabeth

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Caregiving for family members with Alzheimer’s disease and other forms of dementia (ADRD) has been linked to poor caregiver health. While social support can mitigate negative caregiving outcomes, research indicates that many ADRD family caregivers fail to receive or seek adequate support, especially during later disease stages. The stigmatization of people living with dementia can also impact caregiver experiences of aiding a relative with ADRD. To investigate both beneficial and adverse influences on ADRD family caregiver support, including perceptions of stigma, this dissertation draws from sensitive interaction systems theory (SIST) (Barbee & Cunningham, 1995) to conceptualize social support as an interactive process impacted by relational and situational contextual factors and appraisals. In doing so, this study tested hypotheses predicting relationships between caregivers’ perceived stigma, support seeking, social network support provision, and health. U.S. family caregivers who provided primary at-home care for a relative with some form of dementia were recruited to complete an online survey. Path analysis (N = 411) conducted using Amos software revealed differences in how caregivers’ perceptions of affiliate stigma compared to layperson stigma related to their support-seeking behaviors, support provision, and health. This included divergent mediation relationships linking each form of stigma to caregiver burden. This dissertation also substantiated predicted relationships between caregivers’ indirect support seeking and unsupportive support provision, direct support elicitation and supportive provision, as well as unsupportive support provision and caregiver burden. Direct support seeking was also found to be associated with caregiver well-being. Contradictory to expectations, unsupportive support provision predicted caregiver well-being, while supportive provision was linked to burden. Findings overall implicate a complexity in support exchanges occurring between ADRD family caregivers and those they are close to. This dissertation makes theoretical contributions in applying SIST to a ADRD family caregiving context as well as offers practical implications for health practitioners and ADRD caregiving support interventions.


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