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Helpful Ideas - Books to Read

The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.

The books, "What If It's Not Alzheimer's," "The 36-Hour Day," and "Losing Lou-Ann" are the main books that have been suggested to read based on suggestions on the Yahoo Support Groups. The Radins have put together a great book to read. There is lots of information in there. I have not had the time to read the other books yet.

You can find the book for sell on the Internet or you probably can get a copy from the library.

If you know of good book that caregivers can use not listed below, please click on the "Suggest A New Book" button below to get it added.


Books to Read

What If It's Not Alzheimer's?

Edited by Lisa Radin and Gary Radin
Foreword by Murray Grossman, M.D., Ed.D
Published by Prometheus Books
Publication date: 2003
ISBN: 1591020875 (Soft cover)

The book can be found in paperback.

AFTD sells the book for $22 plus $3.95 for shipping. ($25.95 total).  If you would like a copy please send a check made out to AFTD and send to:

The Association for Frontotemporal Dementias
100 N. 17th Street, Suite 600
Philadelphia, PA 19103

Make sure you give them an address to send to.

November 2005 FTD Caregiver Conference DVD

Frontotemporal Dementia Caregiver Conference Video

The Association of Frontotemporal Dementias (AFTD) held a Caregiver Conference in Philadelphia, Pa., in November 2005. They had the general sessions of the conference video tape. This consists of over 3.5 hours of good information. For $23.95 you can order this 2-disk set from AFTD. For more information click here (AFTD 2-disk set).

The AFTD also provides online video access for this conference too. For more information chick here (Online Videos) If you have trouble viewing these videos online, you may want to purchase the DVD.


The 36-Hour Day

Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H.
foreword by Paul R. McHugh, M.D.
A Johns Hopkins Press Health Book

The book can be found in hardcover, large print paperback and plain paperback

Losing Lou-Ann

Erb, Clinton A. Losing Lou-Ann. Brandon, VT: Holistic Education Press, 1996. ISBN: 0962723266


I Remember When

Mobley, Tracy and Austin Mobley. USA Emerald Falcon Press 2006. ISBN: 1933300043


This book is for children.


At the Dementia Research Centre in the United Kingdom there is a list of different books for dementia mostly Alzheimer's.

The Forgetting : Alzheimer's: Portrait of an Epidemic
Shenk, David; Anchor Books; ISBN : 0385498381


Was recommended by a member of the Yahoo Support Group.

The Way of Transition

William Bridges, 2001,Perseus Publishers (part of HarperCollins Publishers) -ISBN 0-7382-0410
Hardback ISBN -
Paperback ISBN - 073820529X

A philosophical summary of his life as he lived during 2 years with his wife dying of cancer. A former transition management/business consultant who worked with companies and their employees to acclimate to change in the work site, he now deals with adjustment to (transition to) the anticipated and final loss of his wife (of 35 years) and love to cancer. A thoughtful book for caregivers, not only spouses. So many of us wives have felt like widows unacknowledged as we cared for our husbands with FTD and it's variants...this gave me some insights during that difficult time.

+11/12/06 (Patty H.)

Ambiguous Loss,Learning to live with Unresolved Grief

Pauline Boss,1999, Harvard Univ. Press 
ISBN 0-674-01738-2

 The title tells it all. The author  "offers readers a poignant understanding of what it means to live with loss mixed with unrelenting uncertainty, and shows us that dealing with such ambiguous loss may be the most difficult challenge an individual or family can face. This is a wise, clear, compassionate book."  Harriet Lerner, Ph.D, author of The Dance of Anger

  This book gave me hope that I wasn't alone in this awful adventure of watching the person I loved turn into a stranger because of Pick's Disease. Shortly before finding the book I met a friend through this Internet support group who's husband also had Picks and through her I met another spouse in Philadelphia who had the book on her table!

+11/12/06 (Patty H.)

On Death and Dying

Elizabeth Kubler-Ross, ISBN 0684839385

Death and Dying is a classic I would also recommend as caregiving people face calling in Hospice.

+11/12/06 (Patty H.)

When a Family Member Has Dementia:
Steps to Becoming a Resilient Caregiver

by Susan M. McCurry
Copyright 2006/Praeger Publishers
ISBN: 0275985741

McCurry's work focuses on us, as caregivers, and offers insight into
our need for self-nurturance while we seek creative solutions to the
needs of our afflicted loved-ones. Without being trite or cutesy,
hers is an easy read that would appeal to all audiences.

+12/21/06 (Cherrie')

The Executive Brain: Frontal Lobes and the Civilized Mind

by Elkhonon Goldberg, PhD.
Copyright 2001/Oxford University Press
ISBN: 0195156307

Goldberg's approaches the topic of frontal lobe function and
dysfunction from his perspective - and long experience - as both
clinician and scientist. It's a fascinating read that helped me
better understand my husband's FTD symptoms.

+12/21/06 (Cherrie')

Social Intelligence: The New Science of Human Relationships

by Daniel Goleman, PhD.
Copyright 2006/Bantam Books
ISBN: 0553803522

Coleman's work is not specific to any disease process. Rather, he
explores brain function as it relates to social connectedness. His
book gave me better understanding as to my husband's lack of empathy
(a result of FTD) and a new appreciation for why it's important for
me to fight the isolation that seeks to settle into my life as his
wife/caregiver. And, um... some valuable insights about a psycho
neighbor, my brother's wife, an old lover, and the mayor. Wink.

+12/21/06 (Cherrie')

The Banana Lady and Other Stories of Curious Behavior and Speech

By Andrew Kertesz
Copyright 2006/Trafford Publishing
ISBN-10: 1425101267

On Amazon they give a good Editorial review at Amazon book review.

+01/11/07 (Donna)

When Bad Things Happen to Good People

By Harold Kushner
Copyright 2004/Knopf Publishing Group
ISBN-13 : 9781400024727

There are several versions of this book.

+11/12/07 (Mary T)

The Dysphagia Cookbook:
Great Tasting and Nutritious Recipes for People
with Swallowing Difficulties

By Elayne Achilles
Copyright 2004/Cumberland House Publishing
ISBN: 1-58182-348-7

+11/27/07 (Janice)

A Three Dog Life

by Abigail Thomas
copyright 2006/Harcourt
ISBN-13: 978-0151012114

Book Description
When Abigail Thomas’s husband, Rich, was hit by a car, his brain shattered. Subject to rages, terrors, and hallucinations, he must live the rest of his life in an institu­tion. He has no memory of what he did the hour, the day, the year before. This tragedy is the ground on which Abigail had to build a new life. How she built that life is a story of great courage and great change, of moving to a small country town, of a new family composed of three dogs, knitting, and friendship, of facing down guilt and discovering gratitude. It is also about her relationship with Rich, a man who lives in the eternal present, and the eerie poetry of his often uncanny perceptions. This wise, plainspoken, beautiful book enacts the truth Abigail discovered in the five years since the acci­dent: You might not find meaning in disaster, but you might, with effort, make something useful of it.


How to have a good death

by Jane Feinmann
copyright 2006/DorlingKindersley Publishers
ISBN-13: 978-1405316293


+11/27/07 (Gill)

Pick's Disease and Pick Complex

by Andrew Kertesz and David Munoz
copyright 1998/Wiley-Liss
ISBN-13: 978-0471177920

Pick's Disease and Pick Complex is a comprehensive and reliable reference that clarifies Pick's diagnosis as compared with other forms of dementia, as well as interrelated variants of the same spectrum. It offers clinical information essential for neurologists, neuropsychologists, geriatricians, psychiatrists, and neuropathologists. It is also an invaluable resource for graduate students and researchers.

Website Note:
This book averages over $125. You may want to go to your local library and see if they can get you a copy.

+11/27/07 (Anne)

The Human Frontal Lobes: Functions and Disorders

by Dr. Bruce Miller & Jeffrey L. Cummings
copyright 1998/The Guilford Press
ISBN-13: 978-1593853297

A caregiver read the book and said it was helpful. She noted the book is a medical textbook and someone has to have an interest in research and medical terminology.

Another caregiver bought it on Amazon.  It was worth every penny spent.  It is an excellent book and very, very informative. I would recommend it to anyone who wants to understand how the frontal lobes function and malfunction in the case of disease.  I believe it covers the temporal lobes as well. (Anne) 

+11/28/07 (Michelle)

The Frontal Lobes

by Jarl Risberg and Jordan Grafman
copyrigrht 2006/Cambridge University Press
ISBN-13: 978-0521672252


+12/01/07 (Anne)

An Evolution of Love
Life and Love with Frontotemporal Dementia

Marie Sykes and Michelle Stafford
copyright 2007/Georgetown Publishing, LLC


INS Dictionary of Neuropsychology

David W. Loring
copyright 1999/Oxford University Press



+12/05/07 (Anne)

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