Andrea Gilmore-Bykovskyi, PhD, RN, associate vice chair of research and associate professor in the BerbeeWalsh Department of Emergency Medicine, will lead efforts at the University of Wisconsin-Madison on a five-year clinical evaluation of a telemedicine intervention for Alzheimer’s disease and related dementias (ADRD).
Specifically, Dr. Gilmore-Bykovskyi will lend expertise on neuropsychiatric symptom management, dementia caregiver support, and health information technology and care innovation.
The I-CARE 2 RCT: Telehealth to Reduce Alzheimer’s-related Symptoms for Caregivers and Patients study is led by researchers at Indiana University and has received nearly $4 million from the National Institute on Aging of the National Institutes of Health. The stage III clinical trial will assess how a caregiver-facing telehealth mobile app, called Brain CareNotes, can positively affect caregivers and people living with ADRD.
As many as 97% of patients with ADRD experience behavioral and psychological symptoms of dementia (BPSD), such as agitation, wandering, depression, and insomnia. Managing these symptoms is a major source of caregiver burden outside of hospital or hospice care settings, and the app aims to help informal caregivers manage neuropsychiatric symptoms of ADRD. As the number of people in the U.S. living with Alzheimer’s disease continues to grow, caregiver well-being is increasingly vital.
The I-CARE 2 randomized clinical trial follows I-CARE, a pilot study to establish the feasibility and potential efficacy of the Brain CareNotes app. After six months of use, Dr. Gilmore-Bykovskyi says the app was shown to ease caregiver burden and reduce behavioral symptoms in dementia patients.
Dr. Richard Holden, co-principal investigator and professor and chair of the Department of Health & Wellness Design at the Indiana University School of Public Health, stated that the I-CARE 2 trial will be significantly larger and broader than the first study. “This will be the definitive trial to tell us whether the app improves informal caregiver and patient health outcomes.”
While the study aims to scale an evidence-based collaborative care model and broaden the availability of accessible and effective ways to support caregivers in managing neuropsychiatric symptoms among people living with dementia, researchers are focused on ensuring the study is representative of populations historically facing structural obstacles to participation in clinical trials. “Populations with fewer opportunities to participate in Alzheimer’s disease research are paradoxically at greater risk for developing the disease,” Dr. Gilmore-Bykovskyi said.
The interdisciplinary team of researchers intends to continue efforts to enroll a large sample of patients and caregivers. “Everyone should benefit from our interventions,” Dr. Holden emphasized.
The Brain CareNotes telehealth app also offers an affordable alternative to higher levels of care, which individuals living with ADRD may need as their symptoms become acute or worsen. And a low-cost telehealth app could help to reduce the financial burden for healthcare payers and insurance companies.
If the I-CARE 2 study demonstrates that the telehealth app can effectively improve ADRD caregiver and patient outcomes in managing behavioral and psychological symptoms of dementia, subsequent studies will continue to broaden the pool of participants and work to relieve the critical public health burden of ADRD.
The interdisciplinary research team is a collaboration between the Indiana University School of Public Health and School of Medicine, University of Wisconsin School of Medicine and Public Health, UW School of Nursing, and UW College of Engineering.