World Alzheimer's Day: Books to Better Understand Dementia

Henri Fourroux

Henri is a Library associate at Mid-City Library

On October 8, 2023, my mom went to the hospital due to another transient ischemic attack – a ministroke – and couldn’t use her left leg. This was her fourth incident in 2023, so she was admitted for observation. She entered skilled nursing on October 13, which sent her to behavioral health nursing on November 27, but her issues were due not to mental illness and she was not officially diagnosed with dementia. Three days later, she returned to the emergency room on November 30 to stabilize her irregular heartbeat.

The next day, a hospice palliative care doctor told me my mom did have vascular dementia. She also had frontotemporal dementia; the MRI showed those lobes had shrunk. Because she had stopped eating and drinking, organ failure would follow, and the doctor told me she would not live more than another month.

He was right. My mom died on December 25, 2023.

What a bombshell. Only one health care professional spoke to me in an appropriate manner about this disease and no doctors before had the intuition to test mom for dementia. Patients living with dementia deserve better than that.

I’ve dealt with my mom’s death by reading books written by people diagnosed with younger/early onset dementia. As they learned about what dementia was doing to them, they came to live and work with their dementia. And I am thankful they wrote about it to benefit others.

According to the World Health Organization, in 2021, 57 million people had dementia worldwide and every year, there are nearly 10 million new cases. The Alzheimer’s Association reported that in 2025 over 7 million people in American are living with the disease and that 1 in 3 older adults die with Alzheimer’s or another form of dementia.

In honor of World Alzheimer’s Day (Sept. 21), I’ve compiled a list of the books that helped me cope with my mother’s passing, which are available to borrow through the Library’s collection. Click the titles below to find and reserve a copy.

1. What the hell happened to my brain? Living Beyond Dementia by Kate Swaffer

Swaffer’s first career was in nursing, working in dementia and aged care then operating rooms. In brief chapters, Swaffer shows her feelings when receiving the diagnosis (the title says it all) and later how she responded as she adjusted to new limits set by the disease. She offers tools to help her retain as much cognition as possible and how to strengthen those parts of her brain that still function.

Swaffer shows how she challenged the health care system to improve care for people with dementia. It’s here I learned my preferred term: care partner (caregiver).

2. On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

O’brien was an investigative reporter for 35 years: this cognitive reserve served him well to write this book.

It is at times a reflection on the happiness of his youth in New York City, but also a chronicle of his life living with and publicly speaking to others on what it means to have Alzheimer’s disease.

World Alzheimer's Day Reading Recommendations

When Herni Fourroux's mother died in 2023, he found solace in books written by people living with dementia.

Alzheimer’s also stole his mother, grandfather, and uncle. O’brien mentions throughout early chapters how his mom lived with Alzheimer’s as she cared for her husband who had cognitive decline, cancer and circulation disease.

3. Memory’s Last Breath Field Notes on My Dementia by Gerda Saunders

Saunders relies on her training as a university professor to document her personal investigation of the neurology of the brain and dementia through science and literature. She recounts her life in South Africa and the choices she made to chart her own independence including how finding work in the United States and immigrating here to become a US citizen gave her tools to work through her illness of dementia. In the last part of her book, she discusses end of life issues and decisions including voluntarily stopping eating and drinking as a means to control her own dying.

4. Somebody I Used to Know: A Memoir by Wendy Mitchell

Mitchell worked as a cleaner and later in administrative roles within the National Health Service of the United Kingdom. Her determination to live her life with dementia is reflected in that she as a single mother raised her two daughters. Mitchell shares her life before and during her first years with dementia. She reminds her daughters she does not want them to become her care givers and shows how she works to retain her independence each time dementia affects her in a new way. When noises become painful, so she moves to a smaller town, when speaking becomes difficult she blogs, requiring her to type every day.

This first book is her autobiography on how Alzheimer’s changed her life.

5. What I Wish People Knew About Dementia: From Someone Who Knows by Wendy Mitchell

Mitchell’s second book details what everyone who doesn’t have dementia should know. Mitchell is thorough, using her skills as administrator to show this. She speaks on dementia, which changes how people express feelings and process their emotions and on the practical things people with dementia need when memory fails them. In summary, Mitchell meets every challenge with the goal of overcoming it. Her attitude is not unlike Swaffer’s.

6. One Last Thing: How to live with the end in mind by Wendy Mitchell

In her final book, Mitchell speaks on death and dementia end of life care. She writes how health care professionals should know way in advance a dementia patient’s last wishes, which Mitchell achieves by filing detailed medical power of attorney and medical proxy with her hospital. This allowed her to remain in charge, even when she can no longer express those wishes.

She asserts patients must ask themselves how they want to live and how they want to die, especially when it comes to dementia. Mitchell rallies other dementia patients into a support group where they encourage and listen to each other. She uses this skill in this book and the previous one to get others to show their feelings surrounding living and dying with dementia.

Since I’ve read these books, I better understand what dementia patients live through. I read these books in memory of my mom and as respect for myself as her care partner. Have you read any books from the point of view of the caregiver of a loved one with dementia? You can find the above titles and other titles by care givers of dementia patients at the New Orleans Public Library.