The Person Before the Diagnosis A November Reflection on Gratitude, Relationships, and Seeing Dementia Differently* I was asked a question once while speaking on a panel: “Who was your mentor?” I don't think my answer was what anyone expected. My mentor was a woman living with dementia. When I first met her, I didn't even know she had dementia. I simply got to know her as a person. Over the next four years, she became a very special part of my life. We spent countless hours together, and without even realizing it, she was teaching me some of the most valuable lessons I would ever learn about dementia. You see, I knew the person before I knew the diagnosis. And I believe that changed everything about how I see people living with dementia today. I didn't meet a woman with memory loss or someone who needed help. I met a person. Someone with a lifetime of stories, experiences, feelings, likes and dislikes. Someone who had lived a whole life long before I ever became part of it. And that person didn't disappear because she had dementia.
So why do we sometimes stop seeing the person once we hear the diagnosis? We begin saying things like, “My mom has dementia,” or “Dad isn't the same anymore.” And while those words may come from a place of sadness, worry, or even exhaustion, I wonder if sometimes we become so focused on what is changing that we forget to recognize what is still there. Mom is still Mom. She still has a lifetime of memories, relationships, traditions, and experiences that have shaped who she is. She may not be able to express herself the way she once did. She may see the world differently or respond in ways we don't always understand. But she is still a person who wants to feel loved, valued, respected, and connected.
Dementia changes the brain. It doesn't erase a lifetime of identity. Finding Gratitude in the Changes. November is a month when we often think about thankfulness. We gather with family, reflect on our blessings, and appreciate the people in our lives. But what does gratitude look like when someone we love is living with dementia? Sometimes it's hard to feel thankful when the relationship is changing. Conversations are different. Routines become challenging. We find ourselves repeating things, becoming frustrated, or wishing things could be the way they used to be. And those feelings are real. But what if, instead of focusing so much on what we've lost, we begin looking for what we still have? Maybe Mom doesn't remember what you talked about yesterday, but she still enjoys sitting with you over a cup of coffee. Maybe Dad can't follow the conversation at Thanksgiving dinner, but he still enjoys hearing familiar music or being part of the family gathering. Maybe the stories aren't always accurate, but the joy of sharing them is still there. These are the moments we don't want to miss.
Learning to Follow Their Lead One of the greatest lessons my mentor taught me was that I didn't always need to be the one leading. When someone is living with dementia, we often feel the need to help, remind, explain, correct, or direct. But sometimes, the best thing we can do is simply slow down. Before responding to something that doesn't make sense to us, can we take a moment and try to see it from their perspective? Before correcting a story, can we just enjoy the conversation? Before insisting that something be done our way, can we ask ourselves if it really matters? And when frustration begins to build, can we give ourselves a moment to breathe before we respond? Not every moment needs to be corrected. Not every situation needs an explanation. And not every conversation needs to make sense to us. Sometimes we just need to meet them where they are. That doesn't mean every day will be easy. It means we are learning to approach things differently, with more patience, understanding, and compassion.
What Are We Thankful For? As we move through November, I want to encourage families and care partners to think about something. When you look at the person you love, what do you still see? Do you see the diagnosis and all the things that have changed? Or can you still see the mother who raised you, the father who taught you, the spouse you fell in love with, or the friend who made you laugh? Think about what still brings that person joy. What makes them smile? What makes them feel comfortable, included, or loved? And maybe, instead of wishing for yesterday or worrying about tomorrow, we can find something to be thankful for in the moments we have today. I will always be thankful for the woman who became my mentor. She never sat me down to teach me about dementia. She taught me simply by allowing me to be part of her life. She helped me understand something that continues to guide my work at Dementia Forward.
When we take the time to know the person, we begin to see dementia differently. And perhaps that's something we can all be thankful for this November.