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 in dementia caregiving and ADRD assessment in order to develop and test hypotheses about how family and kinship ties and norms vary by ADRD status; b) Evaluate current measurement of complex family and kinship ties to older adults, from caregiver and care receiver perspectives; and c) Examine, by ADRD status of the older adult, family and kinship ties and care behaviors. Next, for Aim 2, I will: a) Acquire formal survey methodology knowledge and skills through coursework, b) Conduct focus groups for measuring family and kinship ties, norms, and care behavior among current caregivers to an older adult with or without ADRD, and c) Conduct cognitive testing on survey items. Finally, for Aim 3, I will design, field, and analyze a web survey with caregivers embedded in complex families on their kin ties, care norms and expression.
Health and Human Services, Department of-National Institutes of Health
08/01/2022 to 07/31/2024