A Caregiver's Guide
to Dementia
This book What If It's Not Alzheimer's? is our gift to others who are suffering through the extreme, emotional and physical challenge and hardship of caring for someone with Frontotemporal Degeneration (FTD). As the 26 year-old son of a 55 year-old father diagnosed with FTD in 1995, I was presented with a life altering experience. The love of our family and closeness we shared was the foundation for my decision to have my mother and father move into my home so my mother and I could care for my dad.
Three years was dedicated to a daily routine of complete care for him while attempting to keep going with my own life. This is the challenge of someone my age; to give up the spontaneity and freedom that one expects they would have. It was a difficult time, not only because of the time required to give great care to someone who cannot care for themselves, but due to the lack of resources and information about this family of degenerative diseases. Often, it was a full time job researching information and networking to get at the sources of funding, assistance and medical support we so desperately needed.
At the time, almost no information was available beyond a few sentences in a journal or a mention on the web. FTD was considered rare and lived in the shadows of Alzheimer's disease. Come to find out over the recent years, it is not so rare and many people are misdiagnosed with Alzheimer's disease. The difference in care required is quite dramatic.
Throughout the three years my father was home with my mom and I, we pursued finding a great deal of information, resources and medical professionals whom where dedicated to FTD research and care. It gave us strength to keep on going at a time when it was so tempting to want to give up. In the end, my father died at home by our side and we could have done nothing more to give him a dignified quality of life.
In the years that followed, there was a constant desire to do something with all that we had learned. A need to know that the helpless feeling of watching someone you love slowly die was not for nothing. This was the driving force for us to create a resource for others. A way to give support during their time of need.
It was a three-year process to create this book. We looked to all the experience we had and enlisted many of the professionals we had the good fortune to meet during my father's illness. Over 20 extremely generous health care and other professionals took the time to write chapters for the book. The goal was to create a comprehensive guide addressing every aspect of caring for someone with FTD. I think the book has successfully accomplished this.
As I reflect back on the experience, I feel satisfied. There is always the sadness for my father's death, especially since it was such a young age for both of us. However, to know that someone else can benefit by keeping their attention on a loved one rather than in the quandary of where to go to get help, makes my time all that much more meaningful.
Reader reviews from Amazon.com
"Important book", "So helpful!", "Great resource", "Highly recommend for anyone (friend or family) dealing with a loved one with dementia."
Library Journal, March 2005
Small Press Bestsellers List
Bookwatch, March 2004
"...an updated handbook packed from cover to cover with tips and information for caregivers and sufferers alike."
Book Description
Although the public most often associates dementia with Alzheimer’s disease, the medical profession continues to advance distinctions of various types of “other” dementias. What If It’s Not Alzheimer’s? is the first and remains the only comprehensive guide dealing with frontotemporal degeneration (FTD), the most common form of dementia for people under 60 years of age. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD sufferers.
Beginning with a focus on the medical facts, the first part defines and explores FTD as an illness distinct from Alzheimer's disease. Also considered are clinical and medical care issues and practices, as well as such topics as finding a medical team, palliative approaches to managing care and rehabilitation interventions. The next section on managing care examines the daily care routine including exercise, socialization, adapting the home environment, and behavioral issues along with end-of-life concerns. In the following section on caregiver resources, the contributors identify professional and government assistance programs along with private and community resources and legal options. The final section focuses on the caregiver, in particular the need for respite, holistic health practices and the challenge of managing emotions.
This new, completely revised edition continues to follow worldwide collaboration in research and provides the most current medical information available including understanding of the different classifications of FTD, and more clarity regarding the role of genetics. Additionally, essays written by people living with the disease provide moving, first-hand experiences. The wealth of information offered in these pages will help both healthcare professionals and caregivers of someone suffering from frontotemporal degeneration.
4th Edition 2022.
Where to Buy
Online Booksellers in print and ebook formats
About the Authors
Lisa Radin and her son, Gary Radin, provided complete in-home care for husband and father Neil Radin over a four-year period. In 1998 they founded the Neil L. Radin Caregivers Relief Foundation to share their experience and support families of loved ones who suffer from frontotemporal dementia. They also have planned numerous caregiver conferences and facilitate caregiver support groups. They both have ongoing affiliations with the Alzheimer's Association and Association for Frontotemporal Degeneration (AFTD).