Opinion Today: This conversation changed the way I think about dementia

March 16, 2023

Hosted by Lulu Garcia-Navarro

Produced by Sophia Alvarez Boyd and Rhiannon Corby

Edited by Anabel Bacon and Kaari Pitkin

Engineered by Carole Sabouraud and Isaac Jones

Original music by Isaac Jones, Sonia Herrero, Pat McCusker and Carole Sabouraud


“You have to remind yourself that you know who you are and you are the person who can reaffirm and comfort the person who had reaffirmed and comforted you for so long.”

By Lulu Garcia-Navarro Host, First Person

In hindsight, there is always a moment that sticks out as the sign that someone is forgetting who she or he is. For my husband’s mother, always an avid reader, it was when she couldn’t seem to concentrate enough to finish a newspaper article, much less a book.
As anyone who has experienced a loved one with dementia will tell you, the change is at first disorienting and then terrifying.

One in three older Americans are dying with dementia. And even though it is common, many of those struggling with it, are hidden away, in part because we don’t know how to cope with a person we once knew so well becoming someone else. As my husband’s mother slipped deeper into memory loss, he said it felt like she had died already because the person he had known, and who had known him, was gone. That initially led him to withdraw from her, which is an understandable reaction to a distressing situation but it often leaves people with dementia even more isolated.

There is another way. Anne Basting has been thinking about how to reach people with dementia for 30 years, since she was a young artist volunteering in a locked Alzheimer’s ward. Her work — which won her a MacArthur Fellowship, also known commonly as a “genius grant” — centers on connecting with people suffering from memory loss through creativity and meeting them where they are instead of trying to tie them to your reality.

“It’s asking a person to live in loss and creativity, simultaneously,” Anne told me on this week’s episode of Times Opinion’s “First Person” podcast. But the rewards are great. “If you do both, you’re going to connect with the person that you thought was lost to you. You just have to let go and be willing to move into the moment and where the person is right now.”

Anne, whose own mother has dementia, explains how she does that and shares recordings of how it works in practice. I found our conversation surprisingly uplifting and full of hope. We can reach people with dementia and have a meaningful connection without leaving them to suffer by themselves on their journey.

I’ve seen and experienced the toll dementia takes on a loved one. And I’m far from alone: One in three seniors dies with Alzheimer’s or other forms of dementia. But the symptoms and decline usually happen in private, which can make figuring out a way to live with the illness isolating and frustrating — both for people with dementia and the people who care for them.

Thirty years ago, the artist Anne Basting saw the limitations of our standard ways of caregiving while she was volunteering at a locked Alzheimer’s unit, and she wanted to do something about it. So she came up with a more creative approach to communication, hoping to provide people with dementia new possibilities to engage with their environment, and with other people. Since then, her work has earned her a MacArthur fellowship, and opened up new ways of thinking about communicating across cognitive decline.

“First Person” was produced this week by Sophia Alvarez Boyd and Rhiannon Corby. It was edited by Anabel Bacon and Kaari Pitkin. Mixing by Carole Sabouraud and Isaac Jones. Original music by Isaac Jones, Sonia Herrero, Pat McCusker and Carole Sabouraud. Fact-checking by Mary Marge Locker. The rest of the “First Person” team includes Stephanie Joyce, Olivia Natt, Wyatt Orme, Derek Arthur and Jillian Weinberger. Special thanks to Kristina Samulewski, Shannon Busta, Allison Benedikt, Annie-Rose Strasser and Katie Kingsbury.