The Long-Term Care Data Cooperative published a 2026 study describing its database of skilled nursing facilities, but the research so far validates the data source itself rather than testing a new treatment or care practice. That means the dementia-related projects built on it are still in progress, so nursing homes and families have no new protocol to apply to a resident's care today. The Cooperative is a provider-led database of electronic health record information from skilled nursing facilities, the most intensive level of nursing-home care. It was established in 2021 with funding from the National Institute on Aging and is governed by the American Health Care Association/National Center for Assisted Living, with Brown University as a research partner, according to AHCA/NCAL's overview of the Cooperative.
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Table of Contents
- What did the 2026 study actually measure?
- Does the Cooperative represent residents with dementia accurately?
- What dementia-related projects are using this data right now?
- Why hasn't any of this changed dementia care yet?
- What should families and clinicians do in the meantime?
What did the 2026 study actually measure?
The study, "Characteristics of the Long-Term Care Data Cooperative: A New Resource for Research on Outcomes in Long-Term Care" by Kissam and colleagues, was published in the Journal of the American Geriatrics Society in 2026. It describes who is in the Cooperative's database, not what any treatment does for them, according to the JAGS article. Using 2023 data, the researchers found the Cooperative covered 2,557 skilled nursing facilities, about 17% of all U.S. skilled nursing facilities.
Residents in those facilities were broadly comparable to the national nursing-home population overall, with small but statistically significant differences in demographics and clinical characteristics, per the same JAGS article. This kind of paper is sometimes called a "characterization" study. Its job is to tell other researchers what the database can and cannot answer, not to report a new finding about dementia care itself. A summary from the NIA IMPACT Collaboratory frames the paper exactly this way: as a tool for deciding which research questions the data can support, not as a set of findings that changes practice, according to the IMPACT Collaboratory's summary.
Does the Cooperative represent residents with dementia accurately?
Dementia prevalence among Cooperative residents was 45.5%, slightly lower than the 47.2% estimated for the national nursing-home population, according to the JAGS characterization study. That gap is small, but it means any dementia-focused analysis drawn from this database may somewhat under-represent residents living with the condition.
On the other side, participating facilities consistently documented vital signs, medication administration, blood glucose readings, and immunizations — data often missing from Medicare claims records or the standard nursing-home assessment dataset (MDS), per the IMPACT Collaboratory's summary of the study. For a resident with dementia, those are the exact data points that matter for catching a medication problem or a vital-sign change early, which is why researchers see this database as a meaningful addition despite its slight underrepresentation of dementia cases.
What dementia-related projects are using this data right now?
Two projects currently use Cooperative data to study residents with Alzheimer's disease and related dementias, and both are still underway. The NH-DDIs project is developing and testing an algorithm designed to flag drug-drug interaction risks in residents with these conditions, with the goal of eventually feeding into clinical decision-support software, according to AHCA/NCAL's blog post on the Cooperative. The second, called STRIDE, is evaluating whether educating skilled-nursing clinicians reduces unnecessary use of hypoglycemic medications — drugs that lower blood sugar — in residents with Alzheimer's and related dementias.
Like NH-DDIs, it is an evaluation in progress rather than a completed study with reported results, per the same AHCA/NCAL post. Separately, researchers approved to use the Cooperative's data can link it to Medicare claims through the NIA's Data LINKAGE Program. That linkage expands what a study can examine — for example, connecting day-to-day clinical data to hospitalization or cost records — but setting up the linkage is an infrastructure step, not a finished study with a conclusion, according to AHCA/NCAL.
Why hasn't any of this changed dementia care yet?
Every dementia-related output tied to the Cooperative so far falls into one of two categories: a paper describing the database's population, or a project still testing a tool or an education intervention. Neither category produces a care guideline, because neither has reached a completed trial with reported outcomes, according to a synthesis of the JAGS characterization study and AHCA/NCAL's project descriptions. That distinction matters for anyone searching for a new protocol: a drug-interaction algorithm "in development" is not the same as a tool a nursing home can deploy, and an education intervention "being evaluated" is not the same as a proven way to reduce unnecessary medication use.
Both NH-DDIs and STRIDE may eventually produce practice-changing results, but as of now neither has. There is clear demand for exactly this kind of research. A separate 2026 JAGS survey of nursing home providers found that 41% of 64 respondents named dementia care as a top research priority, according to Chen and colleagues' survey on provider research priorities. The Cooperative is positioned to meet that demand, but the projects built on its data have not yet delivered results that change how dementia is managed in a nursing facility.
What should families and clinicians do in the meantime?
Because no new protocol has emerged from this work, the practical step is to treat the Cooperative as infrastructure to watch rather than a source of new care advice today. A few things are worth tracking: Existing care decisions for a nursing-home resident with memory concerns should continue to rest on current medical guidance and the resident's own clinical team, since nothing in the 2026 Cooperative research changes that guidance yet.
- NH-DDIs' drug-interaction algorithm, which is still being developed and tested rather than deployed.
- STRIDE's evaluation of clinician education aimed at reducing unnecessary hypoglycemic medication use in residents with dementia.
- Future publications that report completed outcomes from either project, rather than descriptions of the underlying data or methods.
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