Caregiving, Complex Family and Kinship Ties, and Alzheimer's Disease and Related Dementias (ADRD)

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Families and unpaid caregivers provide the majority of assistance to older Americans living with limitations in the U.S. Those living with Alzheimer’s Disease and Related Dementias (ADRD) experience progressive care needs and often rely on multiple family caregivers who share responsibilities. Moreover, families have become more complex in recent years – with more step ties, cohabitations, and voluntary kin versus legal or biological ties –and populations with higher rates of ADRD may be at higher risk for having more complex family and kinship ties. There are also concerns that norms about providing care may have weakened as a result. Although population-based aging surveys that are used to track the health and well-being of older adults have broadened their measures of kin to include current stepfamily ties, none provide a comprehensive assessment of family and kin ties from both current and past relationships or voluntary forms of kinship. Moreover, older adults and their family members provide different vantage points for studying implications of family and kinship ties for caregiving and these linkages may fundamentally differ for older adults living with ADRD. Available resources do not allow a full understanding of the central question: under what circumstances do complex family and kinship ties become activated and how does this process differ for individuals living with ADRD? To address this question will require two innovations: 1) a shift in language to recognize family and kinship ties including simple, complex, biological, legal, and voluntary kin (hereafter, “family and kinship ties”), and 2) assessment of norms and care behavior that recognize both caregiver and care receiver perspectives. Without a fuller understanding of these ties and dual perspectives, there remains a critical knowledge gap about the landscape of family and kinship ties available to those living with ADRD, norms for those ties and the actual care they provide, and linkages with unmet care needs in this population. The proposed training and research activities will allow me to transition to an independent researcher who can address these gaps. Starting with Aim 1, I plan to: a) Gain knowledge about dementia caregiving and ADRD assessment; b) Evaluate current measurement of complex family and kinship ties to older adults and produce national estimates by ADRD status; and c) Examine, by ADRD status of the older adult, family and kinship ties and care behaviors from caregiver and care recipient perspectives. Next, for Aim 2, I will: a) Acquire formal survey methodology knowledge and skills through coursework, b) Conduct a scoping review of the literature on family caregiving norms to older adults by ADRD status, c) Conduct focus groups with current caregivers to older adults with or without ADRD to develop measures of family and kinship ties and caregiving norms, and d) Conduct cognitive testing of survey items. Finally, for Aim 3, I will design, field, and analyze a web survey with caregivers embedded in complex families about their kin ties, care norms, and care behaviors.