App-Based Support Improves Dementia Caregivers’ Wellbeing

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App-Based Support Improves Dementia Caregivers' Wellbeing

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As the prevalence of dementia increases, family members continue to be the primary caregivers for their relatives coping with the disease. Some of the most distressing aspects of dementia are behavioral symptoms - such as agitation or aggression - which are common across disease types and stages. These symptoms remain under-detected and undertreated in healthcare. Family caregivers typically lack knowledge of nonpharmacological strategies, considered first-line treatment, to manage these symptoms without medicine.

To examine a strategy for addressing this challenging situation, researchers from Drexel University's College of Nursing and Health Professions and the University of California, Davis, developed and tested a web app, that provides caregivers with information to help them problem-solve and identify nonpharmacological strategies to address the behaviors they are managing with their relatives with dementia.

Recently published in the Journal of the American Geriatrics Society, the study demonstrated that the app, called WeCareAdvisor, has the potential to improve quality of life for caregivers.

The study is the first randomized trial to evaluate an app specifically designed to provide caregivers with a systematic approach to manage dementia-related behavioral symptoms using nonpharmacological strategies tailored to the behavioral context.

The application incorporates the DICE Approach, which systematically guides caregivers through a series of questions that prompt them to describe behaviors, investigate underlying causes, create individualized "prescriptions" providing nonpharmacological strategies tailored to caregiver responses and evaluate their effectiveness. Additionally, caregivers received daily supportive tips via text message, and educational materials were also provided in the app.

The randomized controlled trial compared two groups of participants who self-identified as the primary caregiver of a family member with dementia: "immediate users" and "delayed app users." Participants were interviewed at the beginning of the trial, and again one month and three months later, to evaluate the use of the app and its impact on caregiver distress and well-being, as well as the frequency and severity of behaviors of the person with dementia.

By three months, family caregivers reported important improvements, according to the researchers. The immediate users had modestly - but significantly - lower caregiver distress with behaviors than the control group. For prespecified secondary outcomes, such as the number, frequency or severity of dementia behavioral symptoms, immediate users reported significantly fewer behavioral symptoms, less functional dependence and associated caregiver upset and improved caregiver well-being.

The research team, co-led by Laura N. Gitlin, PhD, Distinguished Professor and dean emerita of the College of Nursing and Health Professions, and Helen C. Kales, MD, Joe P. Tupin Endowed Professor, UC Davis, explained that while observed effects were small to moderate, importantly, this study demonstrated that the app has the potential to improve the caregivers' quality of life. And the researchers suggest their findings can inform further development and refinement of technology-based interventions aimed at improving dementia care for families.

"We found that caregivers used the app on average once a month," Gitlin said. "Caregivers also loved receiving the tip of the day, access to vetted resource educational materials on the app in addition to the strategies personalized to their particular care context and behavioral challenges."

The trial highlighted that caregivers can engage with an app that helps them identify strategies to treat one of the most under-addressed yet pernicious features of dementia.

"Caregivers in this sample were managing, on average per month, about six challenging behavioral symptoms such as agitation, restlessness and wandering," Gitlin said. "Using the app reduced caregiver distress with these behaviors even though they still occurred."

Kales, who has served on the Lancet Commission for Dementia Prevention, Intervention and Care with Gitlin, notes that the reduction of caregiver distress seen in the trial is important.

Prior research by Kales and her collaborators showed caregiver distress is a more important predictor of use of resources, like emergency department visits and inpatient hospitalizations, by people with dementia than symptom severity.

"How distressed the caregiver is feeling appears to drive the trajectory, and so anything that reduces distress in the caregiver may improve daily life for the caregiver and person with dementia," Kales said.

There are no effective medications to manage the range of behavioral symptoms that are common in dementia and addressed in the WeCareAdvisor app, Gitlin explained. So, the study provided a critical approach in dementia care.

In addition to Gitlin and Kales, Leslie McClure, PhD, of Saint Louis University, Melinda Webster of Drexel, and Constantine Lyketsos, MD, of Johns Hopkins University contributed to the study.

Read the full study here: https://journals.sagepub.com/doi/10.1177/1534735426147664.

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