Aside from memory loss and cognitive impairments, often the most difficult aspect of caring for people with dementia is treating their disruptive changes in behavior.

With no reliable medications to treat them and limited information for caregivers regarding alternative therapies, these behavior changes are frequently the source of increased upset, stress and burden to families and often result in nursing home placement.

Now, with the help of a $1.7 million grant from the National Institutes of Health (National Institute of Nursing Research), researchers from the University of Michigan and Johns Hopkins University will work to address these difficulties by designing an easy-to-use, web-based tool that helps caregivers track, understand and treat the behavioral symptoms of dementia.

Laura N. Gitlin, PhD, director of the Center for Innovative Care in Aging at the Johns Hopkins University School of Nursing (JHUSON), and her collaborator Helen C. Kales, MD, associate professor of psychiatry at the University of Michigan Medical School and researcher at the VA Ann Arbor Healthcare System, will develop WeCare during the next three and half years, as part of a study called “An Innovative Caregiver Tool to Assess and Manage Behavioral Symptoms of Dementia.”

“The goal is to make WeCare an easy-to-use resource for family caregivers that helps them better understand dementia and its contributing factors, and provides tailored strategies for in-home, non-pharmacologic behavior management,” Kales says.

“WeCare has potential to improve caregiver skills and the care of individuals with dementia who currently do not receive optimal behavioral management,” Gitlin adds.

Constantine Lyketsos, MD, chair of psychiatry and a geropsychiatrist at Johns Hopkins Bayview Medical Center, calls WeCare “an innovative tool to help families managing behavioral symptoms, one of the challenging aspects of care that is often not addressed in a physician’s office. The WeCare tool may help reduce caregiver stress and enhance quality of life of the person with dementia. More confident caregivers and more comfortable patients with dementia should mean improved care.” Quincy Miles Samus, PhD, of Hopkins’ Department of Psychiatry and Behavioral Sciences, also collaborated on the project.

Kales says the project is innovative in its involvement of key dementia stakeholders in the tool development process, use of state-of-the science technology, and a tailored, algorithmic approach to detecting and monitoring behaviors and selecting non-pharmacologic solutions.

Co-investigators from the University of Michigan: Lawrence An, Laura Struble, Daphne Watkins, Myra Kima.

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