UAS-CLEAR (Caregiving Lifecourse Experiences Assessed in Realtime) is an NIH-funded 2023-2028 longitudinal study of caregiving across adult life. In 2026, its dementia priority is daily-life evidence from caregivers, paired with clear limits in routine health data.
The National Institute on Aging summit report counts more than 2,000 caregivers in UAS-CLEAR, including 476 caring for people living with dementia. For families, this focus on days matters. Mood, sleep, strain, and support shift within a day.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- What UAS-CLEAR tracks
- How daily tracking works
- Why do caregivers stay invisible in data?
- What would make research easier to use?
- What can families ask about now?
What UAS-CLEAR tracks
According to the University of Michigan Institute for Social Research's grant description, UAS-CLEAR develops new measures inside the Understanding America Study. The project runs 2023-2028, is nationally representative, and follows caregivers across the lifecourse. It covers family and non-family caregivers from young adulthood to old age.
Kapteyn and colleagues explain in their BMJ Open overview that the Understanding America Study is a probability-based Internet panel. It is housed at USC's Center for Economic and Social Research. It surveys U.S. households online repeatedly about daily social life and health.
How daily tracking works
The University of Michigan grant description says UAS-CLEAR adds daily check-ins and wearables. Ecological momentary assessment means brief phone surveys during the day. Wearables capture body signals tied to sleep, activity, and stress response.
The tools link daily caregiving moments to same-day emotional and physiological well-being. The study includes ADRD and non-ADRD caregivers. ADRD means Alzheimer's disease and related dementias, and participants include family and non-family caregivers from young adulthood to old age.
Why do caregivers stay invisible in data?
Caregivers often lack a field in medical or admin records. No flag means clinics cannot pull a list for outreach. Research teams then struggle to find, invite, and follow families.
The National Institute on Aging notes in its 2026 summit report that caregivers remain invisible in administrative, health care, and patient-centered data. That gap limits identification, recruitment, and engagement. Data siloes and access barriers persist despite new infrastructure.
What would make research easier to use?
The same summit report points to NHATS/NSOC, NIA Data LINKAGE, LTC Data Cooperative, and Gateway resources. These investments support stronger longitudinal study of caregiving, daily functioning, and health outcomes. Linked data can show change across months and years.
Useful programs are built for clinics from the start. That means design for scale, funding, and fit with daily workflow. Co-design includes system leaders, clinicians, IT staff, patients, and caregivers to embed support in workflows, EHRs, and care-team roles.
What can families ask about now?
Family Caregiver Alliance describes the CMS GUIDE Model as an eight-year alternative-payment pilot that began in July 2024. It funds planning, round-the-clock navigation, coordination, and respite. The goal is to help Medicare beneficiaries with dementia stay home with caregiver support.
Bring specific questions to a clinic visit. Short, direct asks make it easier to get navigation and respite help: Keep a one-week note on sleep, mood, and hard moments to show daily patterns. Ask the care team to record you as a caregiver in the chart.
- Ask about comprehensive dementia planning
- Ask about 24/7 navigation and care coordination
- Ask about respite options that let you rest
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- NHATS and NSOC Dementia Care Data Priorities in 2026: Study Design and Evidence Limits for Family Caregivers
- Home-Based Dementia Care Research Priorities in 2026: What the Report Means for Family Caregivers
- The 2026 NIA Workshop on Comprehensive Dementia Care Models: Questions Family Caregivers Can Ask Local Care Programs
