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Eleven years ago today, on October 18, I said goodbye to my husband, Joe. Anniversaries have a way of bringing back unexpected details. Not only the sadness, but the good things. His humor. His creativity. His eye for beauty and pattern. The life we built together. Our family. Our home. Our travels. The thousands of ordinary moments that make up a marriage. And I remember one extraordinary conversation. Two days before Joe passed away, he suddenly became completely lucid. By

New research asks us to rethink what successful dementia care really means. What makes a good day for you? Perhaps it is having coffee with a friend, taking a walk, listening to your favorite music, or simply enjoying a quiet afternoon without obligations. Often, it is the small, ordinary pleasures that make life meaningful. Now imagine living with dementia. Would those things suddenly become less important? Having cared for several family members living with dementia, includ

If someone you love developed dementia, would you begin to see their life differently? Would you assume they were suffering more than they were? Would you believe they no longer understood what was happening around them? Would you begin making decisions based on the diagnosis rather than on the person you had known for years? These are uncomfortable questions, but a recent study published in JAMA Network Open suggests they are questions we need to ask. Researchers presented n

We talk about dementia mostly in terms of what it takes away. She doesn’t remember me anymore. He can’t drive. My sister doesn’t recognize her children. My spouse forgets that I was just there. The losses are real, and they hurt. But when loss becomes the whole story, we can miss what is still there. That has shaped the way I have thought about dementia care since I first experienced it in my own family and, later, with my dear Joe. I could reach my mother with music. I could

The Paperback Edition of Taming the Chaos of Dementia Has Arrived When my husband Joe was living with Alzheimer's disease, and years earlier while caring for my mother with Parkinson's disease and dementia, I often wished someone had handed me a practical guide. Not another book explaining the disease. Not another list of statistics. I needed someone to answer the questions caregivers ask every single day. Why is this happening? What can I do right now? Is there something bes

And Why They Give Me Hope After more than 40 years in healthcare design—and a deeply personal journey as a caregiver—I’ve seen dementia care from every angle. For too long, the system has focused on managing symptoms rather than supporting the human experience. But something is changing. Across the country—and the world—I am beginning to see a shift. New models, new tools, and new thinking are emerging that finally recognize what caregivers have always known: This is not just

And the Baby Boomers Are Not Going Quietly I have spent decades walking through senior living communities — designing them, studying them, lecturing about them. Many were built for our parents’ generation — the Silent Generation. They endured war, scarcity, institutional authority. They adapted. They complied. So we built environments around endurance. Long corridors.Centralized nurses’ stations.Locked units.Fixed schedules.Safety above all. We told ourselves it was care. Th

Every so often, a dream takes shape that feels bigger than you imagined.That’s how it has felt for both Ruth Shea and me as the Taming the Chaos of Dementia Institute has grown into a place where all caregivers — at home or in care facilities — can find the support, guidance, and tools they deserve. Today, I want to celebrate the Institute and the caregivers who inspire every part of this work. Why We Built This Institute Between Ruth and me, we have decades of experien

Celebrating our newest book and the caregivers who inspired i t. Today was a special day. Ruth and I had the honor of launching our newest book, Caring Through Chaos: Notebook for Dementia Caregivers , at the Northern Virginia Dementia Care Consortium 2025 —a gathering dedicated to dementia caregiver support , essential caregiving resources , and innovative person-centered dementia care . As we stood among family caregivers, nurses, social workers, and memory-care profes

On August 18, 2025 , I had the privilege of presenting at ASID Gather in Atlanta , sharing how design becomes a silent caregiver, my...

Dear Friends, I want to share something deeply personal—and exciting. After years of walking the dementia caregiving journey myself,...

Dear Friends, I’m thrilled to share some exciting news — not just one, but two new caregiver resources will be launching on June 17th...

Who Am I Now? The Loss of Identity in Dementia Reflections from a Caregiver’s Heart As a caregiver to my husband Joe, there were so many...

They say that when someone loses a limb, they can still feel it—an ache, a tingling sensation, a ghostly presence of what once was.

What do you see? The Burden? or the Person? Why do you write off older adults too soon? Yes, you. Why do we all do it? It’s easy to...

Breaking the Stigma of Dementia I thought the stigma around dementia was long past. Haven’t we moved beyond the days of whispered...

When Mark’s wife, Sara, was diagnosed with early-onset Alzheimer’s, he believed his toughest battle would be facing the disease itself....

Dementia is one of the most frightening health risks facing the aging population. I know this all too well—I have been a dementia...

Storms have a way of grabbing our attention. Whether it's the snow and ice storms that recently swept across the Midwest and East Coast,...

The holidays are often painted as a season of joy, laughter, and togetherness. But for those of us caring for a loved one with dementia,...