By Christine Vanlandingham
When someone is diagnosed with dementia, something unexpected often happens: their world gets smaller. Friends stop calling, invitations dry up, and well-meaning people aren’t sure what to say or do. One local individual told me, quietly and painfully, “All of our friends disappeared after my husband’s diagnosis.”
That response—withdrawal, discomfort, silence—is common. But it’s also a choice. And increasingly, communities are choosing something better.
At Area Agency on Aging, we hear from families every day who are navigating dementia. What we’ve learned is simple but powerful: a dementia diagnosis does not end a person’s life or their place in the community. People living with dementia are still neighbors, volunteers, artists, parents, teachers, and friends. When communities stay engaged, people don’t just cope – they continue to live with meaning.
The hardest part of dementia is often not the memory loss itself, but the isolation that follows. Family caregivers – usually spouses or adult children – are suddenly responsible for everything, often with little guidance beyond medical appointments. Many tell us they are exhausted and overwhelmed, unsure where to turn.
But isolation is not inevitable.
Across Southwest Michigan, communities are learning how small shifts can make a big difference. One example is Memory Cafés – informal gatherings held in familiar places like libraries – where people living with dementia and their care partners can relax, socialize, and feel normal again. There’s coffee, conversation, music, laughter, and no pressure to “keep up.” If someone repeats a story, that’s okay. If a caregiver needs to vent, that’s okay too.
One gentleman diagnosed in his 50s was reluctant to attend at first. After a few visits, he told us, “I came in miserable… now it feels like family.” That sense of belonging gave him something many people fear they’ll lose after diagnosis: purpose.
Caregivers benefit just as much. Larry had been caring for his wife Cheryl around the clock for years and couldn’t leave her alone. Through a volunteer match, someone now visits twice a week so he can run errands and catch his breath. “She put daylight at the end of a dark tunnel,” Larry said. That kind of support isn’t complicated – it’s human.
We’re also seeing how better coordination can ease the journey. Through a new Medicare approach called GUIDE—Guiding an Improved Dementia Experience, families receive support from a dedicated dementia care navigator. This person helps families plan ahead, connect services, and respond to challenges before they become crises. GUIDE is only available in select areas of the country, and Southwest Michigan is fortunate to be one of them. Early on, caregivers tell us the relief is real. As one spouse shared, “We’re not just reacting anymore. We’re planning—and enjoying life again.”
What ties all of this together is a mindset shift: treating people living with dementia not as problems to manage, but as people who still belong.
And here’s the good news—this isn’t just work for professionals. Every one of us has a role to play. It might be continuing to invite a neighbor after a diagnosis. Being patient at the grocery store. Learning what dementia actually looks like. Volunteering a few hours a month. Or simply staying present when others pull away.
Dementia will touch nearly every family at some point. The question is not whether it will affect us, but rather what kind of community we choose to be when it does.
People living with dementia are still here. When we choose inclusion, we don’t just support them – we strengthen the entire community. That’s a future worth building, together.
If dementia has touched your life—or the life of someone you love—you don’t have to figure things out alone. Area Agency on Aging can help connect individuals and caregivers to information, support, and community-based programs and other relevant services for those affected by dementia. To learn more or start a conversation, visit areaagencyonaging.org or call 800-654-2810.
Christine Vanlandingham is CEO of Region IV Area Agency on Aging in Southwest Michigan. Questions on age or independence services? Call (800) 654-2810 or visit areaagencyonaging.org to learn more and get connected to the support you deserve. The Generations column appears each weekend in The Herald-Palladium.
Dementia Support & Resources
GUIDE – Guiding an Improved Dementia Experience (Medicare)
A Medicare program developed by the Centers for Medicare & Medicaid Services (CMS) to improve coordinated care and caregiver support for people living with dementia. GUIDE is available in select areas of the country, including Southwest Michigan.
Informal social gatherings for people living with dementia and their care partners, offering connection, conversation, and a welcoming environment.
Region IV Area Agency on Aging can help connect individuals and caregivers to information, programs, and support in Southwest Michigan. 800-654-2810