Background: More than 5 million Americans are living with Alzheimer’s disease or a related dementia, which is expected to triple in the next 30 years. People living with dementia (PLWD) have higher rates of hospital stays, emergency room visits, skilled nursing facility stays, and overall health care utilization. Care partners experience increased anxiety, depression, and stress. The disconnect between health care settings and evidence-based care for PLWD has stymied the real world health care setting from adoption of promising interventions. Care settings that embrace a culture of continuous learning are ideal settings for embedded pragmatic clinical trials (ePCTs), which can accelerate evidence generation in a cycle that creates sustainable improvements in clinical practice.
Methods: The mission of the NIA IMPACT Collaboratory is to build the nation’s capacity to conduct ePCTs of nonpharmacologic interventions embedded within health systems for PLWD and their care partners. Over the past year, IMPACT developed a learning health network (LHN), a consortium of individuals representing care settings and organizations joined by the common goal of improving care quality, equity, and accessibility for PLWD and their care partners. The LHN is intended to comprise 4 communities, bringing together stakeholders and catalyzing collaboration to build capacity for ePCT research: 1) longterm care (nursing homes, assisted living facilities); 2) health care settings (ambulatory care clinics, Accountable Care Organizations, Medicare Advantage plans, integrated delivery systems); 3) hospitals/emergency departments (inpatient, hospital at home, prehospital); and 4) communitybased organizations (Meals on Wheels, hospice, senior centers, adult day centers).
Results: Thus far, 3 communities have formed within the LHN. Topics discussed have included setting-specific priorities for dementia care, common interests in dementia research, challenges within each setting to implement ePCTs with this population, and how to collaborate. Currently, there are multiple IMPACT funding opportunities to support research collaboration in this area.
Conclusion: This LHN is building a national resource devoted to the intersections between ePCTs for persons with dementia and the setting in which they receive health care. The LHN seeks to engage investigators and sites within the HCSRN and other health care settings to establish a collaborative to support and facilitate the conduct of ePCTs among PLWD and their care partners.