Category Archives: Support for Caregivers

Posts mention resources and suggestions that can help caregivers stay healthy.

Books That Tell the Dementia Story

Way back when my mom was first diagnosed with dementia, I searched the Internet and scoured stores for books to help me understand the disease. There were not many good reads available at that time. Though more have appeared in recent years, I now believe that the complexities of dementia force many authors to focus on tiny slices of the story.

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Still Alice, by Lisa Genova, attracted many readers partly because it was one of the first novels to address the topic of Alzheimer’s. From a writer’s perspective, it’s an amazing book because the author had a terrible time finding a publisher. She had to self-publish her book and sell it from the trunk of her car before a publishing house finally took it on. Her faith in the book was well-founded since it sat unchallenged on the New York Times Bestseller list for 40 weeks!

All Gone: A Memoir of My Mother’s Dementia  by Alex Witchel is a more recent effort chronicling a writer’s perspective on her mother’s dementia. This book describes the emotional journey taken by the author as her mother’s dementia resists efforts to defeat it. This book has gotten a lot of press, partly because the author writes for the New York Times.

Last month Cleaver Magazine asked me to review The Faraway Nearby by Rebecca Solnit, an award-winning writer. Many elements of this book are fascinating, but its treatment of dementia is pretty unsatisfying. The wild range of stories in the book mutes the author’s emotional response to her mother’s dementia. If any life event triggers strong emotions, its got to be the challenge of facing this illness.

Books that truly illuminate the nature of dementia have the power to help patients, families and caregivers struggling with the disease. If you’ve read something great or have a new title to recommend, please post your suggestions here. Inquiring minds need to know.

Music Versus Dementia

It’s been over a year since I first watched the video of Henry, an Alzheimer’s patient awakened by music. More than a million others have also seen this YouTube clip. But now I view the dementia-music link in a new light.

Making Music, Making Memories

Making Music and Memories?

For the past few months, my mother’s been losing her ability to speak. Her words have a strange shape and rhythm that resembles language from an undiscovered planet. My knowledge of her needs usually helps me figure out what Mom wants. But the relationship does not work in reverse. I must say things two, three — even five times — before she can interpret “let”s walk” or “do you want more juice?”

I don’t mind experimenting with different words to help her understand better. As a writer, I do a lot of that for other people. But last week I had an experience that changed the way I look at this problem. Mom was involved in a music activity with a group of people who have dementia. A volunteer with no musical training passed around a box of simple percussion instruments like wood blocks and tambourines. She asked each person in the room to sing a one verse solo of This Little Light of Mine. Mom always been shy about singing, but she liked playing the tambourine and that seemed to give her the courage to sing.

Her words came out garbled, but she made it through the verse and kept playing the tambourine while others sang. When it was time for us to go, I said, “Mom, it’s time to get up.” She stood immediately, with no help from me. I told her we needed to walk to the next room, and she did it. No guidance, no need for me to repeat. Something about singing and playing had activated her old ability to take directions and understand what I was saying! Although we’ve used music with her for a long time, she is normally in a more passive role, like listening or dancing. It seemed to me that singing and playing had a far greater impact on her.

Of course, I’m not the first person to notice this. Petr Janata, associate professor of psychology at UC Davis’ Center for Mind and Brain, has been studying the relationship between music and brain activity for a long time. Janata has theorized that the region of the brain where memories are stored and retrieved “also serves as a hub that links familiar music, memories and emotion.” This hub is located in a part of the brain that is  “one of the last areas of the brain to atrophy over the course of the disease.”

Janata believes that “a piece of familiar music serves as a soundtrack for a mental movie that starts playing in our head. It calls back memories of a particular person or place, and you might all of a sudden see that person’s face in your mind’s eye….We can see the association between those two things — the music and the memories.” He is involved a number of exciting research projects that examine this connection between music and memory. Janata is also looking at the link between spirituality and music.

I never doubted that music helped my mother feel happier and more interested in life. But after last week’s tambourine performance, I’m thinking of new ways we can use music to help her even more. Have you had any experiences that can teach us how to improve our use of music with loved ones?