UAS-CLEAR, Understanding America Study-Caregiving Lifecourse Experiences Assessed in Real-time, makes daily caregiver experience and linked health data the 2026 priority. Family caregivers can ask how a study records daily life, links surveys to health records, and reflects dementia care.
The Alzheimer's Association reports more than 12 million unpaid caregivers gave about 19.6 billion hours in 2025. It values that time at $446.3 billion in its 2025 Alzheimer's Disease Facts and Figures. Families absorb most care, so usable data matters.
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 across caregiving life
- Why 2026 priorities link surveys and health records
- How research reaches clinics and homes
- What to ask before you join a study
- What data still misses
What UAS-CLEAR tracks across caregiving life
The University of Michigan Institute for Social Research describes UAS-CLEAR in its grant page as a nationally representative longitudinal study. It adds caregiver surveys plus daily assessments and wearables. It follows ADRD and non-ADRD caregivers across adulthood, where ADRD means Alzheimer's disease and related dementias.
The National Institute on Aging reports in its 2026 summit report that the study follows more than 2,000 caregivers, including 476 dementia caregivers. They report higher burden, fewer rewards, and more life changes, yet similar daily stressful and positive events. More positive daily moments may support better mood.
Why 2026 priorities link surveys and health records
The 2026 National Institute on Aging summit made accessible data infrastructure a priority. It called for linking answers from people with dementia and care partners to Medicare and clinic records. EHR means electronic health record, the clinic file of visits, diagnoses, and orders.
McKnight's Senior Living summarizes the summit examples as NHATS/NSOC, NIA LINKAGE, the LTC Data Cooperative, and Gateway to Global Aging. No single survey shows the full course of care. Ask whether a study you consider uses such linkages.
How research reaches clinics and homes
The Centers for Medicare and Medicaid Services launched its 8-year GUIDE model on July 1, 2024 with 390 organizations, described in its GUIDE announcement. GUIDE means Guiding an Improved Dementia Experience. Those organizations build Dementia Care Programs for hundreds of thousands of Medicare beneficiaries.
The programs pay for coordination, caregiver education, and some respite. The National Institutes of Health says its IMPACT Collaboratory funds embedded pragmatic trials. Embedded means the study runs during usual care, testing non-drug supports inside real hospitals and clinics. They enroll representative patients, not only tightly screened volunteers.
What to ask before you join a study
The National Institute on Aging and Alzheimers.gov advise families to start with the Clinical Trials Finder or NIA trial listings. USC's Alzheimer's Trial Recruitment Institute adds practical checks on insurance and telehealth.
Contact study staff with your questions written down. Compare answers across two or three studies before you decide.
- purpose and who can join
- visits, time, risks, benefits, and costs
- insurance coverage and telehealth options
- who to contact, including ADEAR help at 800-438-4380
What data still misses
The NIA summit and its Real-World Data workshop note that data silos and access barriers persist. Medicare claims alone poorly capture memory and thinking changes. Surveys, clinic records, and claims each show only part of care.
Ask how a study links surveys, clinic records, and claims. Ask who is excluded and whether GUIDE needs Original Medicare Parts A and B. If a study cannot explain its linkages or exclusions, keep looking.
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- NHATS and NSOC Dementia Care Data Priorities in 2026: Questions Family Caregivers Can Ask About the Research
- Home-Based Dementia Care Research Priorities in 2026: Questions Family Caregivers Can Ask Local Care Programs
- The 2026 NIA Workshop on Comprehensive Dementia Care Models: Care-Planning Implications for Family Caregivers
