Because Dementia is Different

By Amy Kowinsky

It’s hard to pinpoint exactly when it began. Was it the first time she told you the same story twice in one visit? Or the moment you realized he just wasn’t acting quite like himself? In hindsight, the signs feel obvious — but in the moment, it’s human nature to explain them away. We all forget things sometimes. He’s just been under a lot of stress.

Let’s talk about the elephant in the room — the fear of a dementia diagnosis. It’s one of the scariest conversations families face. The uncertainty, the “what ifs,” the worry about what comes next … and we all know that dementia has no cure, that it gets worse over time, and that medications often don’t help. Those words alone are enough to make many people normalize the signs they see, avoid the conversation, or delay seeing a doctor. Researchers are working tirelessly for a cure, and we all hope for the day when no one has to face dementia. But right now, countless families are in the thick of it. Chances are, you know one.

As the disease progresses, dementia can be as hard, if not harder, on the family caregiver as on the person living with it. Life doesn’t prepare you for this role. One daughter said, “I think about it all the time. Am I doing the right thing for my mom? It feels like a second job I was never trained for and don’t feel competent at.”

While dementia is a medical condition, much of the struggle isn’t medical at all. It’s emotional. Social. Relational. It touches every part of life — yours and theirs. And every journey is unique. There’s a saying: If you’ve met one person with dementia, you’ve met one person with dementia. The disease looks different for everyone, and so does the caregiving experience.

That’s why cookie-cutter advice rarely helps. Google searches can leave you more confused than before. As a result, many families are left feeling guilty, inadequate, confused, and frustrated — even though they’re doing the best they can.

If this sounds familiar, you’re not alone. And you don’t have to navigate this journey without help. Dementia360, a program of Presbyterian SeniorCare Network, exists to give families the support, resources, and guidance they need to keep a loved one safe and comfortable at home for as long as that’s the goal. At the heart of Dementia360 is the relationship between your family and a dedicated dementia care coordinator, someone who will walk beside you, offering personalized knowledge, practical skills, and ongoing support so you can feel confident and capable in your role. Wherever you are in the dementia journey, help is available. 

While we can’t cure dementia, it is definitely possible for families to live better with it. 

Amy Kowinsky, Executive Director, Dementia360, can be reached at (412) 435-8950 or akowinsky@srcare.org. Learn more at SrCare.org/Dementia360. Interested landlords can also call the HCV Department at (412) 456-5090.