Adapting Online Support Interventions for Lewy Body Dementia Caregivers

May 11, 2021

Research, Parkinson’s Disease/ Lewy Body Dementia, Caregiving, Dimensions Spring 2021, ADRC News

In a new project funded by the UW Medicine Garvey Institute for Brain Health Solutions, a multi-disciplinary UW Medicine team will create an online platform for caregivers of loved ones with Lewy body dementia. VOCALE-LBD will enable participants to share their experiences in a supportive space and build problem solving skills to help them in their caregiving and their efforts to stay healthy.

Published in Dimensions Magazine  - Spring 2021 

Oleg Zaslavsky, PhD, an associate professor in the UW School of Nursing, focuses on developing technological interventions to promote the health and resilience of older adults. Virtual resources, such as mobile apps and online discussion platforms, can keep families informed and connected—and never more so than during the stay-at-home order. When the pandemic hit, Zaslavsky and his team found themselves in a unique position to explore the value of their online support program for different vulnerable populations.

Oleg Zaslavsky, PhD, Associate Professor, UW School of Nursing

Since 2015, Zaslavsky and his team have created and evaluated Virtual Online Communities for Aging Life Experience (VOCALE), an online platform for older adults living with frailty to discover new management strategies and discuss their symptoms, such as pain, weakness, tiredness, low mobility, and sleep difficulties. In several pilot studies that ranged from 8-10 weeks, participants reported positive changes in their lives and health. They came away better able to leverage their own knowledge to improve their strategies to deal with daily medical challenges.

After receiving needed training and instruction, VOCALE participants log in at regular intervals, engage in educational didactics, and interact with each other through written messages. They share about their own experience, but they also share their strategies. For example, one person talked about taking boxing lessons to improve her balance. Another person talked about a creative solution to improve her sleep.

Annie Chen, PhD, Assistant Professor, UW Department of Biomedical Informatics and Medical Education

Fundamentally, VOCALE aims to promote 'resilience', a term in psychology for the capacity to bounce back after stress and adapt to challenges. Zaslavsky's approach focuses on a major pillar of resilience called 'self-efficacy,' or the extent to which people believe that they can help themselves. The VOCALE team aims to tap into a person's inner resources and encourage a sense of control over their situation.

"We learned that the core elements are enhancing person-to-person connection and helping them to think about their problem-solving skills," says Zaslavsky. Through exchanging ideas and learning from each other, participants gained the confidence and empowerment that comes with improved self-efficacy.

Now, in a new collaboration with UW Medicine and UW Memory and Brain Wellness Center, a multi-disciplinary team will customize this online platform for people who have unique life experiences and urgent unmet needs: caregivers of loved ones with Lewy body dementia. VOCALE-LBD will enable participants to share their experiences in a supportive space and build problem solving skills to help them in their caregiving and their efforts to stay healthy. 

Kimiko Domoto-Reilly, MD, Assistant Professor, UW Department of Neurology

The effort is one of eleven big ideas selected for an Innovation Grant award by the UW Medicine Garvey Institute for Brain Health Solutions. Along with Zaslavsky, the leaders of this project include Annie Chen, PhD, an assistant professor in the UW Department of Biomedical Informatics and Medical Education and Kimiko Domoto-Reilly, MD, a neurologist at the UW Memory and Brain Wellness Center and PI of the UW Lewy Body Dementia Research Association Center of Excellence. She will bring clinical expertise in the experience of this type of dementia to this team. 

The Lewy body dementias (LBD), a term referring to both dementia with Lewy bodies and Parkinson’s disease dementia, are the second most common type of dementia in older adults. These are complex disorders because patients may develop disruptive behaviors and sleep problems that make caregiving challenging. Compared to other types of dementias, caregivers of people with LBD report higher stress and more severe depressive symptoms. 

“Providing effective support infrastructure for caregivers of people with Lewy body dementia remains challenging, especially in the setting of the pandemic,” says Domoto-Reilly. “Moreover, support groups for caregivers of people with other dementia-related conditions might not address critical issues specific to LBD. We hope an intervention like VOCALE-LBD can begin to open doors to better support and care.”

First, the team wants to learn from caregivers themselves. The team is now conducting virtual individual interviews and focus groups to help them understand caregivers’ experiences, needs, and priorities. Then they will develop and test the re-designed intervention in a pilot study focused on usability and effectiveness in improving health outcomes.  

By engaging in human-centered, community-driven design of this online support system, this Garvey Innovation project will begin to lay the groundwork for promoting resilience within families affected by the behavioral challenges of dementia in our increasingly virtual world. •

-Genevieve Wanucha

To learn more about this study, please contact the study team at vocale@uw.edu or 206-880-0410.