The Long-Term Care Data Cooperative is a federally funded national database of de-identified, person-level electronic health record data drawn from skilled nursing and assisted living facilities, and it now underpins a growing body of dementia research. It began as a pandemic-era project to answer questions about infection spread and vaccine effectiveness in nursing homes, where evidence was initially scarce, according to AHCA/NCAL. For families managing dementia care, the Cooperative itself is not something you search or log into. It is a research infrastructure that feeds studies on medication safety, infection management, and care quality for cognitively impaired residents — work that eventually shapes what happens inside the facility where your relative lives.
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
- Who runs the Cooperative and what data does it hold?
- Does the data actually represent typical nursing home residents?
- How does this connect to Medicare data, and why does that matter?
- What dementia-specific projects are using this data right now?
- What can a family caregiver actually do with this?
- Frequently Asked Questions
Who runs the Cooperative and what data does it hold?
The Long-Term Care Data Cooperative is governed by the American Health Care Association/National Center for Assisted Living (AHCA/NCAL), working in partnership with Brown University's NIA IMPACT Collaboratory, Hebrew SeniorLife, and New York University. It is funded through a National Institute on Aging supplemental grant to the IMPACT Collaboratory, according to Provider Magazine. Enrollment is free for providers, and more than 1,000 nursing home providers nationwide had joined as of AHCA's program materials.
Resident records are pulled directly from major long-term-care electronic health record systems, including PointClickCare, MatrixCare, and American HealthTech, according to an AHCA/NCAL enrollment flyer. In 2025, NCAL extended the Cooperative into assisted living, adding the EHR vendor Yardi to the existing nursing-home feeds. That expansion brought residents with dementia who live in assisted living — not only those in skilled nursing — into the data pool for the first time, according to Provider Magazine.
Does the data actually represent typical nursing home residents?
A February 2026 report from the IMPACT Collaboratory, describing a new study in the Journal of the American Geriatrics Society ("Characteristics of the Long-Term Care Data Cooperative: A New Resource for Research on Outcomes in Long-Term Care," by Kissam, Recker, Gifford, Mor, and White), found that residents in the Cooperative's 2023 skilled-nursing sample were broadly comparable to the national nursing-home population. The authors reported only modest demographic and clinical differences, according to IMPACT Collaboratory.
That comparability matters because a data set skewed toward unusually healthy or unusually sick residents would produce findings that don't generalize. The same characterization study found that participating facilities consistently documented vital signs, medication administration records, blood-glucose readings, and immunizations — a level of granular clinical detail that Medicare claims or standard MDS assessments typically lack, according to IMPACT Collaboratory. That detail is especially useful for studying residents with dementia, who are frequently excluded from claims-only research because billing codes alone can't capture medication timing, vital-sign trends, or day-to-day clinical status.
How does this connect to Medicare data, and why does that matter?
Approved researchers can link the Cooperative's EHR data to Medicare claims through the National Institute on Aging's Data LINKAGE Program. That link lets a single study combine clinical detail — medications, vital signs, cognitive status — with billing records and mortality outcomes, according to Brown University School of Public Health.
This combination supports comparative-effectiveness studies and pragmatic trials: research designs that test real-world treatment differences across large populations rather than small, controlled samples. For dementia care specifically, that means researchers can trace how a medication change or care protocol affects both clinical status and downstream outcomes like hospitalization or death, using data from facilities residents are already in.
What dementia-specific projects are using this data right now?
Two active projects illustrate what the Cooperative is actually producing for dementia care. The first, TRAIN-AD, trains nursing staff, families, and caregivers on infection-management best practices — specifically for urinary tract infections and pneumonia — for residents with dementia, spanning roughly 50 skilled nursing facilities in an integrated provider network, according to IMPACT Collaboratory.
The second, STRIDE, evaluates whether educating skilled-nursing clinicians reduces unnecessary hypoglycemic and diabetes medication use in residents with Alzheimer's disease and related dementias. This targets a documented overtreatment risk: cognitively impaired nursing-home residents are sometimes kept on diabetes regimens that are too aggressive for their reduced ability to recognize or report symptoms of low blood sugar, according to IMPACT Collaboratory. Both projects use the Cooperative's EHR feed to identify which residents are affected and to measure whether staff training changes actual clinical practice — not just intentions.
What can a family caregiver actually do with this?
The Cooperative is a research-access resource for approved academic and industry studies. It is not a public lookup tool, and it does not function as a care-coordination system, according to the AHCA/NCAL FAQ.
You cannot search it to see your relative's facility or records. Its value to families is indirect. It flows through the studies and staff-training interventions it funds, which can change practice inside facilities over time:.
- Ask your facility's administrator or director of nursing whether the facility participates in the LTC Data Cooperative or in projects like TRAIN-AD.
- If your relative is on diabetes medication and has dementia, ask the care team directly how blood-glucose targets are set and whether they've been adjusted for cognitive status — the exact overtreatment question STRIDE is studying.
- If your relative has had repeated UTIs or pneumonia, ask what infection-prevention protocols the facility follows and whether staff have had recent training on them.
- Treat Cooperative-funded findings as evidence that can inform a conversation with your care team, not as a substitute for that conversation.
Frequently Asked Questions
Can I request my relative's own records through the LTC Data Cooperative?
No. The Cooperative provides de-identified data to approved researchers only; it has no public lookup function, according to the AHCA/NCAL FAQ.
Does the Cooperative cover assisted living, or only nursing homes?
Both. Nursing home data came first, and NCAL added assisted living facilities in 2025 through the Yardi EHR system, according to Provider Magazine.
How is this different from Medicare claims data researchers already use?
Claims data shows what was billed; the Cooperative shows clinical detail like vital signs, medication administration, and glucose readings, and the two can be linked through NIA's Data LINKAGE Program for combined analysis, according to Brown University School of Public Health.
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