Working on your new year's resolution to read more books in 2024? Great reads for patients, caregivers, family and friends.
Dementia can be isolating — for the person living with the disease, and for caregivers. It can also be generative. For a number of our 2023 Live Talks interview series participants, it’s inspired including a number of books about this world of experiences. Scientists and experts on topics like genetic testing have also published some important reads of late. Read on for Being Patient Live Talks Producer Katy Koop’s reading recommendations authored by guests of our Live Talks series in 2023.
1. For spouses seeking support on their caregiving journey:
I Didn’t See It Coming, by Mary Lou Falcone
The experience of caregiving, especially for a spouse, can be isolating. Mary Lou Falcone’s memoir, I Didn’t See It Coming, reminds this community that they’re not alone.
As a classical music publicist, educator, performer, and dementia advocate, Falcone shares her experience caring for her late husband, Nicholas “Nicky” Zann, who was living with Lewy body dementia until his death in 2020.
Detailing her and her husband’s journey with love, loss, and Lewy body, the book is full of illustrations by Zann — and stories about how Falcone’s life experience prepared her for this journey.
Zann was not just a visual artist but also a musician, and Falcone is a classical music publicist. The book is full of stories of art and music, in addition to speaking about the couple’s experience.
Using her experience of telling the stories of musicians like Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, and James Taylor, Falcone shares her story of navigating caregiving and showcasing her love story.
2. For readers interested in the history of Alzheimer’s and aging:
Self, Senility, and Alzheimer’s Disease in Modern America: A History, by Jesse F. Ballenger, PhD
It wasn’t until the 1940s, less than one hundred years ago, that scientists agreed that cognitive decline was not a normal part of aging. The history of Alzheimer’s disease, or even how we think about age, has gone through significant changes throughout the years. For history buffs looking to learn more about dementia, the history of how we began to think about aging over the years can shed light on how far we’ve come in the last several decades and how far we have yet to go.
Drexel University’s Jesse F. Ballenger, Ph.D., an expert in the history of Alzheimer’s disease, traces the history of Alzheimer’s disease and attitudes around aging in Self, Senility, and Alzheimer’s Disease in Modern America. Particularly for people living in the United States, the book looks at how attitudes about the sense of self and around senility have evolved throughout our history.
For people looking for more context on the history of Alzheimer’s disease and attitudes around it, the book is a worthy addition to the reading list.
3. For the caregiver who loves to read and learn:
My Father’s Brain, by Sandeep Jauhar
For people from a more scientific or medical background, caregiving can be a tricky balancing act. “One of the things that I think a lot of caregivers sort of understand intuitively, and this is where my being a doctor may have interfered with my caregiving, or my optimal caregiving, is that there’s a difference between lying to someone for your own benefit and for their benefit,” as Sandeep Jauhar explained in his live talk with Being Patient, “Telling the truth when it causes tremendous anguish isn’t worth it. It actually doesn’t matter.”
For that reason, Jauhar’s book My Father’s Brain is a chronicle of people like him who struggle to “validate dementia’s reality.” By tracing his journey as a son, scientist, and caregiver of his father with dementia, the book explains the science and history of dementia while also telling a personal story. Ultimately, he wrote the book to serve as “a balm for people going down this road.”
For people struggling with this journey and also hoping to learn more about the science and history of dementia, this book is an excellent addition to the reading list. You can also learn more about Jauhar’s journey and the book in his Live Talk.
4. For people considering genetic testing to understand Alzheimer’s or -MAB drug risk:
To Test or Not to Test: A Guide to Genetic Screening and Risk, by Doris Zallen
While tests that can determine if you have the Alzheimer’s gene, the genetic variant ApoE4, are available, it is a difficult decision to get one. Knowing your genetic status can have personal and even long-term care coverage effects and impact the safety of taking newer monoclonal antibody (MAB) drugs. As Marwan Sabbagh discussed in a recent live talk on genetics, having two copies of APOE4 while taking these new treatments can cause ARIA or brain bleeds.
For those reasons, people need to make informed decisions when deciding to get genetic testing. Dr. Doris Zallen helps readers navigate that decision in her book, To Test or Not to Test. With interviews from practitioners and patients alike, Zallen’s book is a guide to making the decision to get tested.
“There are many reasons to have genetic testing and to get that genetic information about yourself, but there are many reasons not to,” Zallen explained in her live talk with Being Patient, “the main point I learned from these people on the front lines, the professionals, and the people with real-world experience is that preparation is important. You have to think about it and decide whether going ahead with it is right for you.”
For people considering genetic testing, this book would be an excellent guide to the process and what to expect. However, it’s always a good idea to seek the help of a genetic counselor. You can learn more about the principles from the book in this Live Talk.
5. and 6. For children with questions about dementia:
Ellie’s Butterflies, by Alecia Smith
Why Does Granny Forget Things: A Trip to the Brain, by Julissa Cruz Gómez
When you have young children with a parent, grandparent, or another loved one with dementia, it can be challenging to have a conversation about what is happening. Katie Brandt, whose husband and father both had forms of dementia, described her experience talking to her son in a live talk on Frontotemporal dementia, “One of the things that I really noticed talking with my son is when he was very young; actually, he didn’t have a lot of questions. He just accepted that his dad and his grandfather were as they were and that they weren’t good at remembering things.” While her son didn’t experience his dad talking for most of his life, he accepted him.
“I often think it’s children who are elementary age and above that need more explanation about, you know, something is going on in dad or grandpa’s brain, and they need extra support,” Brandt explained, “These are the ways that we can help them because I think kids want to feel like they know they can be helpful, too.”
Brandt recommended the book Ellie’s Butterflies by Alecia Smith, which is about a young girl trying to navigate the complex emotions of having a grandfather with FTD. This colorfully illustrated book about Ellie’s experience can serve as a way to talk to young children about dementia and help them understand the changes happening.
For parents or loved ones looking to have this tough conversation about dementia with young children, this book can be a great way to start the conversation and add comfort during a confusing time. You can also learn more about FTD and Brandt’s experience as a caregiver in the live talk.
Another book to help kids get their heads around a loved one’s dementia diagnosis is by Julissa Cruz Gómez, a Dominican doctor in the Netherlands. Cruz needed a better way to explain dementia — and make it less scary — for her niece. In colorful, illustrated Why Does Granny Forget Things: A Trip to the Brain, a sister and brother enter the brain of their grandma who has dementia and travels to the different parts of the brain, like the region responsible for memory called the hippocampus, that are affected by the disease.
Katy Koop is a writer and theater artist based in Raleigh, NC.