Redefining What It Means to Live With Memory Loss

There is an unhelpful narrative that surrounds Alzheimer’s disease and other kinds of dementia, says Thomas Grabowski MD, director of the Memory Brain Wellness Center and professor of radiology and neurology. It goes something like this: As the population continues to grow and age, dementia cases will skyrocket and there’s little that can be done to slow or prevent it, or to make the most of life beyond diagnosis.

Grabowski calls it the “narrative of loss,” and while it’s frequently used to elicit urgent action, it’s damaging for those living with memory loss or dementia because there’s a lot one can do to live a full, enjoyable life with memory loss — especially when diagnosed early.

“I think Marigrace Becker is going to bring together a cohort of talented people from different organizations to make this a national model, maybe a global model to help the dementia population.”
– Richard M. Ferry, Memory Hub founding donor

By the time someone has symptoms, says Grabowski, they’ve actually had a pre-symptomatic form of the disease for many years. “There’s a huge opportunity for prevention by intervention during the early stage. And the worst-case scenarios that people fear don’t always — not even most of the time — come to pass,” he says.

The UW Memory Hub, scheduled for a soft launch this fall, aims to make the memory loss journey less daunting and to improve quality of life for people with memory loss and their families by providing resources, activities and community.

“We see the Memory Hub as the third pillar of the UW Memory Brain Wellness Center,” says Marigrace Becker, program manager for community education and impact, and the director of the Memory Hub. “We have a clinic at Harborview as well as research activities with the UW Alzheimer’s Disease Research Center, but we didn’t have a place for our community outreach programs that focus on building dementia-friendly communities alongside our partners.”

Becker has been running engagement programs for people with dementia for many years from Harborview Medical Center, but always dreamed of moving these nonclinical programs out of the hospital and into the community. With the launch of the new Memory Hub, there will be a welcoming gathering space with room for existing programming, new programming and even new partnerships.

“We wanted a space where people can leave behind the identity of patient or research participant and simply be a person thriving in community,” says Becker. “And when we found the space, we realized that it was perfectly suited to hold not just our programs, but also our partners and their programs —bringing a wide variety of memory loss resources under one roof.”

One key partner is the Frye Art Museum, on whose campus the Memory Hub building is located. Grabowski notes that the museum is a natural fit philosophically and geographically. Not only is the Memory Hub located across the street, but unlike most museums, the Frye has a decade-long history of providing robust Creative Aging Programs.

“[My husband] benefits from the Garden Discovery Walks by being out in the fresh air and getting some exercise early in the day. . . He also benefits from being in a supportive and small group of people. I love the walks as a way of visiting some parks and gardens that are delightful and new to me. I feel support from being with other caregivers and the staff.”
– Susan S., care partner

“Having a community that is not afraid of Alzheimer’s disease is priceless. They acknowledge that this new life will be entirely different from the life we previously had with our loved one. Within this community, we have learned how to live with Alzheimer’s and we have made lifelong friends. We sustain each other. I cannot imagine traveling this road without them.”
– Carla and Kirk Griswold, MBWC community advisory group members

“This is a unique partnership between a memory disorder clinic, our partners and a free art museum. Can you imagine a less stigmatizing environment to build dementia-friendly community?” asks Grabowski.

And there may be no better time than right now when everyone has a deeper understanding and appreciation for community, given the social isolation that has spiked due to the COVID-19 pandemic. For many people with dementia, Becker points out, feeling isolated is nothing new. That’s why connecting people who have memory loss with others who understand their experience and journey is critical.

“Community can be the difference between feelings of despair and feelings of hope — the feeling that you can get through this,” says Becker. “By creating the Memory Hub, we are ensuring that people with dementia are woven into the fabric of community life, rather than sidelined and forgotten.”

The Memory Hub is also reframing the “narrative of loss” more positively by focusing on the strengths that are retained, or even strengthened, in people with memory loss. Creativity is often retained, which is why the Memory Hub will offer outstanding arts programming.

The space will feature a rotating art gallery displaying work created by people with memory loss and their families. And the Garden Discovery Walks, a partnership with Seattle Parks and Recreation in which horticultural therapy helps people explore different sensory aspects of the natural world, will continue in the specially designed memory garden that surrounds the Memory Hub.

“I live [in assisted living] with 175 people, maybe 40 of them have Alzheimer’s, but nobody ever talks about it. I needed a place to talk about having Alzheimer’s.”
– Philip C., past participant and MBWC peer mentor

The kind of imaginative, innovative thinking that went into creating the Memory Hub inspired the Richard and Maude Ferry Foundation to make a generous founding gift, with a $1 million match. The Foundation has already enabled education and wellness programming for over 1,000 people with memory loss and their families each year.

“This gift enabled us to dream big,” says Becker. “When we began imagining what would truly impact the lives of people with memory loss and their families, the idea of a transformative community outreach space was born. And Richard and Maude Ferry’s gift made it possible.”

The Memory Hub is meant to model what a community of support looks like for people with dementia and memory loss, but it will also depend on the community for support — especially over the next five years. Its success depends on other visionary donors who understand the importance of supporting people with memory loss and their families at every step of the memory-loss journey.

Support from donors will not only keep the building operational, it will enable the growth of the memory garden, expand programming and improve the lives of those with memory loss and their families by providing opportunities to connect, learn, share and grow. “Future donations are essential to the daily operations of the Memory Hub,” says Becker. “We cannot create this unique space or bring together this vibrant mix of partners and programs without gifts.”

Grabowski is confident people will see the Memory Hub is worth investing in. “As our programming matures and we find new synergism within this space, it’s going to be a very compelling experience,” he says. “The Memory Hub is unlike anything out there. It’s going to inspire people.”

Written by Eleanor Licata