A Personal Journey Through Caregiving for a Loved One with Early Onset Dementia
Dementia Friendly Week in Cleveland Heights is a time to learn, connect, and come together in support of those affected by dementia. Hosted annually by Heights Libraries, this weeklong event features workshops, book talks and educational programs like Dementia Friends sessions. It’s about more than information: it’s about building a community that understands and supports individuals with dementia and their caregivers.
For Nancy Levin, Director of the Cleveland Heights-University Heights Public Library, the mission of Dementia Friendly Week is deeply personal.
Nancy’s connection to Alzheimer’s is rooted in family history. “My mother died of complications from Alzheimer’s, and my aunt, who was ten years older than my mother, also had it,” Nancy shares. This prior experience shaped the family’s approach when Karen received her early-onset diagnosis nearly a decade ago.
Early on, the family proactively sought guidance. “About three or four years ago, we started talking about what to do if things got bad,” Nancy recounts. A significant step was meeting with the Alzheimer’s Foundation where Karen was able to make her wishes known.
Even though it was a difficult time as they grappled with the diagnosis, this early conversation provided a crucial framework for Karen’s care. One of Karen’s clear desires was to be cared for by loved ones whenever possible, rather than bringing a stranger into the house.
A Team Effort
While Karen’s partner, Tracy, is her primary caregiver, Nancy stresses the collaborative nature of their support system. “I am not the primary caregiver. I am a part of a team,” she states. This team includes other family members and friends who actively participate in Karen’s life.
Nancy describes a network of friends and family who regularly step in to help. “My sister has a whole community around her. People come to visit, take her on outings and go for walks with her.”
These acts of care matter deeply to Nancy. “It means a lot to me, because I don’t want her to feel like she’s been abandoned or put aside. We’re all doing what we can to make sure she still feels seen and included.”
The Weight of “Pre-Grief”
Witnessing her sister’s journey has also brought about a unique form of grief. “We talk a lot about pre-grief,” Nancy explains. “You know what’s coming. You know what you’re going to lose, and you start grieving that before it even happens.”
This kind of loss—sometimes called ambiguous loss—can feel especially heavy, because the person you love is still physically present, but gradually changing.
“It’s hard,” she says. “But I try to focus on what’s happening now. I try to enjoy each day and to make her days better. She’s still here. She still laughs, she still enjoys things. So I want to be in those moments with her.”
Heights Libraries: A Hub of Support and Awareness
Nancy’s personal experience deeply informs her work at Heights Libraries, which has become a vital resource for the community, including those affected by dementia. The library offers memory kits, designed to engage individuals with dementia through sensory experiences and familiar objects. This initiative reflects a commitment to providing practical support and fostering understanding.
One popular example is the Memory Disco—an uplifting program where participants sit in a circle with silent disco headphones and maracas in hand, moving to the beat of familiar tunes. “It’s just joyful,” Nancy says. “You can see people light up when a song comes on that they recognize.”
Building a More Supportive Society
Nancy’s experience has made her a strong advocate for systemic change in how society supports both people with dementia and their caregivers. While she’s grateful for the community around her sister, she knows many others aren’t as fortunate—and that our systems aren’t always designed to meet the real needs of families.
One area she believes urgently needs improvement is workplace support. “If we want people to be able to take care of their family members, they need paid leave,” she says. “They need flexibility. They need employers to understand the toll caregiving can take, physically, emotionally and logistically.”
She also stresses that the landscape of dementia is changing—and systems must adapt. “There’s a growing number of people with early-onset dementia, and they don’t fit the mold of a lot of existing services,” she explains. “In Karen’s case, most of the people on her floor in memory care aren’t even in her own peer group. There’s also the issue of people not recognizing that younger people can have dementia. When Karen’s out in the community, people can be even more impatient than they would be with a visibly older adult, which can be frustrating.”
Joining the Conversation During Dementia Friendly Week
As Cleveland Heights prepares for Dementia Friendly Week, Nancy’s story serves as a powerful reminder of the human element at the heart of this issue. By offering resources, education, and fostering a supportive environment, Heights Libraries is taking meaningful steps towards building a community that embraces dementia friendliness. This upcoming week offers an opportunity for everyone to learn more, connect with others and contribute to a more compassionate and understanding society for individuals like Karen and their dedicated caregivers.