When Everything Feels Like It’s Changing

Understanding the Dementia Journey Through Two Lenses

As someone who walks alongside care partners and individuals living with dementia every day, I want to offer something honest and hopeful. This reflection comes from both sides of the journey.

At first, the changes might seem small. A forgotten appointment. A word that sits just out of reach. A once-familiar route that now feels unfamiliar. These moments can be brushed aside, especially by the person experiencing them. “I’m just tired.” “Too much on my mind.” “It’s nothing.”

But deep down, something starts to shift.

For the person living with dementia, there’s often a quiet awareness long before anyone else notices. A subtle sense that things aren’t quite right. And with that awareness comes a mix of emotions—fear, frustration, uncertainty, maybe even shame. It’s hard to admit that something is changing, especially when you’re not yet sure what it is.

For the care partner, the signs might be easier to spot but harder to accept. It might begin with gentle reminders, taking over a task here or there, trying to “help” without drawing attention to what’s happening. Often, it feels like walking a tightrope between love and worry.

Then comes the diagnosis.

Hearing the words “You’re living with Alzheimer’s disease” or “This looks like frontotemporal dementia” can land like a tidal wave. For some, it may be disorienting. Life may suddenly feel divided into “before” and “after.” For others, the diagnosis may not fully register—whether because of disbelief, denial, or a condition called anosognosia, where the brain no longer allows a person to recognize their own changes or challenges. And for the care partner, even if suspected, the confirmation can knock the wind out of you.

From that moment forward, life becomes a series of transitions. Some are predictable. Others arrive without warning. There are shifts in roles, routines, responsibilities, and relationships. What once came naturally might now require patience, creativity, and support.

And it’s okay to grieve that. It’s okay to feel overwhelmed.

But here's what else is true—there is still room for joy. For purpose. For connection. The diagnosis doesn’t erase the person. It doesn’t erase your relationship. Yes, things are changing, but that doesn’t mean there’s nothing left.

In fact, there is so much still possible.

It might be sitting together on the porch, holding hands, listening to favorite songs that spark a smile or even a singalong. It might be cooking a simple meal together, even if it means slowing down and measuring one step at a time. It could be folding towels side by side, arranging flowers, watering plants, or sorting old photos while sharing the stories that surface.

But it can also be more than that.

It might be taking a scenic drive to watch the leaves change or to visit a favorite ice cream stand. Attending a community concert or dancing barefoot in the backyard to a favorite song. Joining a memory café or a local art or gardening group designed for people living with dementia. Creating a scrapbook together. Watching a live-streamed Broadway show or cheering for a grandchild at their soccer game. Painting a picture. Tending a raised garden bed. Celebrating small wins with a favorite treat—a scoop of ice cream, a glass of wine, or whatever brings a little joy.

Moments of meaning don’t disappear—they just shift.

Each stage of the journey brings opportunities to find new ways of being together. That might mean letting go of what “used to be” and embracing what is now, learning to be more present, more flexible, more intentional in your connection. It can look like moments of laughter that catch you by surprise, or the quiet peace of simply being together without needing to fix or explain.

Hope doesn’t mean pretending it’s easy. Hope means holding space for possibility in the midst of change.

For the person living with dementia, it means being seen for who they are, not just what’s changing. For the care partner, it means giving yourself grace while you figure it out one step at a time.

You don’t have to walk this path alone.

Looking for support? Reach out. Let’s navigate this together.

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