A recently published book, Atypical Dementias: Understanding Midlife Language, Visual, Behavioral & Cognitive Changes, provides insight into FTD and other atypical dementias and explains the science behind the conditions.

Author Jamie Talan presents a broad overview of atypical dementias such as FTD by exploring the lived experiences of dozens of families affected by a diagnosis, and by sharing her own experiences from her career as a medical writer. Talan also tells the stories of many prominent researchers who made key breakthroughs in studying atypical dementias, including AFTD Medical Advisory Council members such as Bruce Miller, MD, and M.-Marsel Mesulam, MD.

In each chapter, Talan describes a handful of different people diagnosed with the same form of dementia, and how the progression of the disease affected the person diagnosed and their families. Many of the cases Talan presents are interspersed with context into how each atypical dementia affects the brain, and how these changes result in dementia symptoms.

Atypical Dementias not only characterizes each disease, but also demonstrates how people’s symptoms can be considerably different from one another even if they share the same diagnosis. In the chapter discussing behavioral variant FTD, a young mother with a diagnosis is characterized as having become quiet, withdrawn, and not reacting to anything said to her, while an older father is described as becoming more socially disinhibited, losing interest in lifelong hobbies, and having lost the warm and loving demeanor he always had.

Talan goes into depth on the genetics of neurodegenerative diseases, sharing stories of families who had relatives previously affected by FTD, with some families learning of their genetic status after generations of being affected.

The book also illustrates the difficulty in getting a diagnosis and finding proper care for people affected by FTD. Many families who spoke to Talan had their loved one misdiagnosed at least once before finally receiving a proper diagnosis, while others struggled to find long-term care.

Talan writes in the book’s introduction that the lived experiences of families affected by FTD and other dementias are stories that “need to be told,” and that greater public awareness of atypical dementias is essential.

“My prayer is that this book will help more people get diagnosed sooner, and also that it will be a clear message to those who battle atypical dementias and those who love them: you are not alone,” Talan said.

Atypical Dementias: Understanding Midlife Language, Visual, Behavioral & Cognitive Changes is available on Amazon digitally through Kindle or in print.

Interested in reading more about FTD? Click here to check out AFTD’s list of recommendations for books, blogs, and more.