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

> **NIH NIH R00** · UNIVERSITY OF MICHIGAN AT ANN ARBOR · 2024 · $249,000

## Abstract

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 analy...

## Key facts

- **NIH application ID:** 11138810
- **Project number:** 4R00AG073473-03
- **Recipient organization:** UNIVERSITY OF MICHIGAN AT ANN ARBOR
- **Principal Investigator:** Sarah Elizabeth Patterson
- **Activity code:** R00 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $249,000
- **Award type:** 4N
- **Project period:** 2022-08-15 → 2027-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11138810

## Citation

> US National Institutes of Health, RePORTER application 11138810, Caregiving, Complex Family and Kinship Ties, and Alzheimer's Disease and Related Dementias (ADRD) (4R00AG073473-03). Retrieved via AI Analytics 2026-06-03 from https://api.ai-analytics.org/grant/nih/11138810. Licensed CC0.

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