Image courtesy of Allyson Valentine Schrier
As program manager for the MBWC Project ECHO® Dementia program, Allyson Schrier has brought management expertise and creativity to this critical educational resource for care providers across Washington State. Her experience as family caregiver motivates her far-reaching work. She is now moving on to devote more time to her role as co-founder of Zinnia TV. Her story shines a light on the work of ECHO Dementia to help primary care physicians detect and diagnose dementia.
When Allyson Schrier sees a problem, she loves to put her managerial and creative skills into solving it. And there are few problems she can't fix. But when her beloved husband Evan began showing social and cognitive changes in 2006, Schrier faced the challenge of her life. It ended up taking six years to get him a diagnosis of frontotemporal dementia (FTD) at age 47, when their two boys were just 12 and 15. He passed away at age 54.
"That was six years of meeting with different doctors, including a neurologist and a neuropsychologist twice," she said. For a long time, an initial diagnosis of attention deficit hyperactivity disorder led to ineffective medications and confusion about what do to for Evan.
Allyson Schrier, MFA
Looking at Allyson's career path ever since, it's evident that the wave that threatened to knock her down has lifted her up and amplified her force. She couldn't solve FTD, but she could make a positive difference in the lives of other families and medical professionals.
In response to her challenging caregiving experience, she became an Independent Coach and Consultant with Teepa Snow's organization, Positive Approach to Care, in 2018. She now speaks at conferences about 'How to be Friends with People Living with Dementia'. In 2019, she began to teach the WA State DSHS’s full-day Dementia and Mental Health Specialty classes that are required for professional care partners in Washington State. She has also facilitated support groups of caregivers and trained in the Dementia Friends Washington program at the UW Memory and Brain Wellness Center (MBWC).
All the while, Schrier worked to bring a dream to reality. Knowing that people living with dementia are often seated in front of TV shows, she wanted to create a more engaging, appropriate, and beneficial viewing experiences. In 2020, she founded Zinnia TV, a company offering videos for people living with dementia that help calm anxiety and provide assistance with daily life. She received a 2020 Maude's Award for this work. “I wish that I had this tool while caring for my husband,” she said.
During the COVID-19 pandemic, Schrier learned about the new community center on First Hill called the Memory Hub: a Place for Dementia-Friendly Community, Collaboration, and Statewide Impact. She learned that the Memory Hub would host a virtual dementia education program for primary care providers, called Project ECHO® Dementia (Extension for Community Healthcare Outcomes), a MBWC program. She applied to the open program manager position.
The MBWC's Project ECHO Dementia is now a thriving virtual clinic and telementoring program that brings together care providers from across the state to discuss case studies and best practices in diagnosis, care, treatments, and research. Participants leave equipped with the tools, knowledge, and connection to experts that help them meet the needs of their patients with memory loss or dementia. The effort is co-led by Kris Rhoads, PhD, a MBWC neurologist, and Nancy Isenberg, MD, PhD, a neurologist and medical director at the Center for Healthy Aging at Swedish Neuroscience Institute– two of Schrier’s heroes in dementia care innovation.
"To me, one of the things that was so compelling about ECHO Dementia was the opportunity to help practitioners in Washington State better understand what they're seeing when people with signs of dementia come into their office. My hope is that other families don't need to wait years for a diagnosis because there will be a broader base of with care providers who understand what they're seeing."
Primary care providers are often the first people that families could seek out help for a loved one’s changes in memory or thinking. However, providers, especially in rural settings, often don't have enough training to accurately diagnose dementia or earlier cognitive changes. They lack access to specialty neurology teams and services to help with diagnosis.
According to the 2023 Alzheimer's Association Facts and Figures' special report on the patient journey, a large survey found that of the 10% of individuals in the US age 45 and older who reported noticing symptoms of cognitive impairment in themselves, 54% had not consulted a health care professional about their symptoms. This report notes that nearly all primary care physicians reported waiting for patients or family members to request an assessment for dementia. The goal of Project ECHO Dementia is to ensure that more people receive the resources and support that comes along with an early and accurate detection of memory loss.
"The most fulfilling thing for me in this role has been the fact that there are people showing up to ECHO sessions from different medical practices, who, because of this program, are now very quick to detect and diagnose dementia, and then provide support in an appropriate way," says Schrier.
In her role, Schrier has brought her personal insights and management skills to bear on shaping the program's goals and helping to develop the ECHO curriculum. She helped design the flow of day-to-day processes, such as connecting with the participants and didactic speakers. For some examples, she worked with the University of Washington so that ECHO can offer Continuing Education Credits to participating providers. She oversaw the archiving of all ECHO didactic videos and resources, for use by anyone wanting deeper education on dementia and all aspects of care and support.
“After ECHO Dementia was funded, we waited for quite a while to make sure we found the right person for the program manager position, which is a unique combination of meta-level program development and micro-level project management," says Kris Rhoads, co-leader of Project ECHO Dementia. "Allyson Schrier immediately made it clear that she was indeed that person – and so much more. There’s no way ECHO Dementia would be where it is today without her keeping the ship both afloat and headed in the right direction.”
Recently, Schrier’s company and passion project, Zinnia TV, was chosen as one of the Techstars Future of Longevity Accelerator Class of 2023, an award that provides support to start ups that focus on innovative solutions to address the unmet needs of older adults and their caregivers. This development has thrust Zinnia TV into a growth stage, requiring all her focus. The team at the UW Memory and Brain Wellness Center and the Memory Hub knows well that if anyone can bring a project to success, it’s Allyson Schrier.
“It has been amazing to be part of the MBWC and Memory Hub community," says Schrier. "I'll miss the people and getting to work with Kris Rhoads, Nancy Isenberg, and Marigrace Becker, director of the Memory Hub. I love how the Memory Hub is a safe place for people to come together in a positive way and I am thrilled to have been part of it.” • Genevieve Wanucha
