Association for Frontotemporal Dementias

Books & DVDs

Top RecommendationsNewlyDxcover [1]

***NEW!  A Guide for Managing a New Diagnosis – The Doctor Thinks It’s FTD. Now What? [2] is a publication from AFTD that helps individuals and families take a strategic approach to a diagnosis of FTD and prepare for the changes it brings.  If you are requesting more than 4 copies, please click here for our order form [3], which includes a $1/book charge to cover shipping costs.

[4] Understanding the Genetics of FTD: A Guide for Patients and Their Families [5]In collaboration with AFTD, The University of Pennsylvania Center for Neurodegenerative Disease Research has created a booklet of current and reliable information on the role that genetics plays in FTD, the genes that have been associated with hereditary FTD, and genetic testing.  If you are requesting more than 5 copies, please click here for our order form [6], which includes a $1/book charge to cover shipping

What About the Kids? Booklet [7] - The AFTD Task Force on Families with Children has written and produced a brand new [8]tool for parents with young children and teens. What About the Kids? is a sensitive, practical guide for parents to help their children deal with a parent who has FTD. Download the .pdf from the above link or contact info@theaftd.org [9] to request the printed booklet.  If you’re requesting more than 5 copies, please click here for our order form [10], which includes a $1/book charge to cover shipping costs.

It Is What It Is – A powerful, 18-minute film by AFTD to increase understanding

[11]Frontotemporal degeneration robs its victims of the very things that make them unique as human beings- their personality, their emotions, and their ability to communicate. It Is What It Is chronicles four families as they confront FTD. By telling their stories, these families reflect experiences common to many and become harbingers of hope.  The DVD is accompanied by a 12-page informational booklet [12] (free to download) on frontotemporal degeneration.

Produced by the Association for Frontotemporal Degeneration, 2011. Order form available for download: It is What It Is order form [13], or click here [14] to order online. [15]

 

The National Institute on Aging has a consumer-friendly booklet, Frontotemporal Disorders: Information for Patients, Families, and Caregivers. The free, 30-page booklet, which includes contritubutions from AFTD, explains the disorders, causes, symptoms, and management in layman’s terms. To read the booklet or order copies, click here [16]or call 1-800-438-4380.

 

[17]What if it’s Not Alzheimer’s edited by Lisa Radin and Gary Radin
This comprehensive guide, the first to deal specifically with frontotemporal degeneration, provides a wealth of information to both healthcare professionals and caregivers.  Designed as both a resource and a reference guide, it contains twenty-five chapters full of practical information that every caregiver needs, beginning with medical facts exploring how FTD differs from Alzheimer’s, to clinical, medical and rehabilitation care issues. Updated and revised in 2008.

Publisher: Promethius Books, 2003

Available at:  Amazon.com (In hard copy and e-book form), Barnesandnoble.com (Not available in stores), Borders.com (Not available in stores)

DVDs

Planning for Hope-Living with Frontotemporal Disease is a moving documentary created by Susan Grant, who is diagnosed [18]with FTD, to bring attention to this terminal disease. Six families share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones. Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.  For more information about the film, click here [19].

Disordered by Klaas Jansma and Pieter Wolswijk

This three-part documentary on frontotemporal degeneration (FTD) shows how the lives of three patients have changed  and how this has affected the people around them. Klaas Jansma is a psychologist involved in the Dutch National Steering Committee for Young People with Dementia. Pieter Wolswijk is a geriatric psychologist and freelance filmmaker. This documentary is an initiative of the Intercollegiate Group of Geriatric Psychologists in the Arnhem Region, the Netherlands. Read a description [20] or view the movie trailer. [21]

Price: $27 inclusive of shipping and handling. For each copy sold in the USA and Canada, $3 will be donated to AFTD.

Available through:   Klaas Jansma via email at krjansma@hotmail.com [22]

Books

The Common Sense Guide to Dementia for Clinicians and Caregivers by Drs. Anne M. Lipton and Cindy D. MarshallCommon Sense Guide [23]

Clinicians, family members, and other caregivers will find this volume useful from the moment that symptoms of dementia emerge. Written by a neurologist and psychiatrist who have cared for thousands of patients with dementia and their families, this guide espouses general principles of dementia care that apply across the stages and spectrum of this illness.  Non-Alzheimer’s types of dementia are included in addition to Alzheimer’s disease.

Publisher: Springer 2013

Available at: Amazon.com and Springer
http://www.springer.com/medicine/neurology/book/978-1-4614-4162-5 [24]

 

The Banana Lady and Other Stories of Curious Behavior and Speech Dr. Andrew Kertesz

Kertesz, a neurologist and researcher, presents 19 factual stories of people with FTD, chosen to represent the typical behavior and language changes associated with the disorders.  In each chapter the biology of the underlying brain disorder and the social and cultural aspects of the behavior change are explored. Additional chapters address tips for caregivers, and the biology, genetics and pharmacology of the disease in lay terms.

Publisher: Trafford Publishing, August 2006

Available at: Amazon.com and Barnes andnoble.com (Not available in stores)

 

[25]A Grief Observed by C. S. Lewis

This book inspired the film Shadowlands [26], but it is more wrenching, more revelatory, and more real than the movie. It is a beautiful and unflinchingly honest record of how even a stalwart believer can lose all sense of meaning in the universe, and how he can gradually regain his bearings.

Publisher: HarperOne, 2001

Available in stores and at Amazon.com, Barnesandnoble.com and Borders.com

 


A Dignified Life. The Best Friends Approach to Alzheimer’s Care, a Guide for Family Caregivers
by Virginia Bell and David Troxel

A compassionate approach to understanding people who have Alzheimer’s or related dementias. The authors stress that victims are usually confused, not malevolent or willful, and share ways to keep situations from worsening and enhance peace of mind for caregiver and patient alike.

Publisher: HCI, 2002

Available at: Amazon.com, Borders.com (Not available in stores), Barnesandnoble.com (Not available in stores)

 

[27]Caresharing by Marty Richards

A clinical social worker with decades of experience, Richards (Caregiving: Church and Family Together) knows her subject deeply. She proposes revising the usual understanding of caregiving; it’s not a one-way connection in which one gives and the other receives, but rather a mutual relationship of shared care that takes advantage of each person’s strengths.

Publisher: SkyLight Paths Publishing, 2008

Available at: Amazon.com, Barnesandnoble.com (Limited availability in stores), Borders.com (Not available in stores)


Eldercare for Dummies
by Rachelle Zuckerman

Need help caring for an elderly loved one? This sensitive, reassuring guide provides strategies for assessing older persons’ needs, arranging for care, ensuring their safety, and enhancing quality of life — all while respecting their dignity. You’ll see how to manage physical disabilities and chronic health problems, evaluate nursing homes

Publisher: Wiley, John & Sons, Incorporated, 2003

Available at: Amazon.com, Barnesandnoble.com (Available in some stores), Borders.com (Available in some stores)

The 36 Hour Day by Nancy Mace and Peter Rabins, MD

This guide has been used widely for over 25 years by caregivers of people with Alzheimer’s disease. It offers practical and compassionate guidance on a wide range of caregiving issues including diagnostic evaluation, research, medications, legal and financial information, and community living arrangements.

Publisher: The Johns Hopkins University Press, 2006

Available at: Amazon.com, Barnesandnoble.com (Available in stores), Borders.com (Available in some stores)

Validation Techniques for Dementia by Vicki de-Klerk-Rubin

Written especially for family members and friends caring for people with dementia, this practical guidebook offers a solution to commonly faced communication and relationship difficulties. The Validation approach s caring, empathetic techniques have been used and valued by professionals and families around the world to support meaningful communication and interaction with people with memory impairments.

Publisher: Health Professions Press, 2007

Available at: Amazon.com, Barnesandnoble.com (Not available in stores), Borders.com (Not available in stores)

Novels, Essay Collections and Memoirs

An Uncertain Inheritance edited by Nell Casey

In this eloquent collection of essays from the editor of the national bestseller Unholy Ghost: Writers on Depression contributors reveal their experiences in caring for family through illness and death. This compelling book offers both literary solace and guidance to the people who find themselves witness to and participants in the fading lives of their intimates

Publisher: Harper Perennial, 2008

Available at: Amazon.com, Barnesandnoble.com (Not available in stores), Borders.com (Not available in stores)

Elder Rage by Jacqueline Marcell

This riveting, often humorous, non-fiction novel chronicles Jacqueline Marcell’s trials and tribulations, and eventual success at managing the care of her aging parents.

Publisher: Impressive Press, 2001

Available at: Amazon.com, Barnesandnoble.com (Limited availability in some stores), Borders .com (Not available in stores)

Losing Lou-Ann by Clifford A. Erb

This book offers an intensely personal account of the lingering death of the author’s wife  from Pick’s disease. Written in immediate, clear, and compelling language, it reveals the effect of early-onset dementia as his family tried to understand, cope with, and provide support for a dying young wife and mother.

Publisher: Holistic Education Pr (1996)

Available at: Amazon.com, Barnesandnoble.com (Not available in stores)

My Grandfather’s Blessing by Rachel Naomi Remen

Through a series of unpretentious, affecting vignettes, the author of the bestseller Kitchen Table Wisdom encourages readers to recognize and celebrate the unexpected blessings in their own lives

Publisher: Riverhead Trade, 2001

Availableat : Amazon.com, Borders.com (Available in stores)

Still Alice by Lisa Genova

Neuroscientist, Genova, mines years of experience in her field to craft a realistic portrait of early onset Alzheimer’s disease. Alice Howland has a career not unlike Genova’s-she’s an esteemed psychology professor at Harvard, living a comfortable life in Cambridge with her husband, John, when the first symptoms of Alzheimer’s begin to emerge.

Publisher: Pocket, 2009

Available at: Amazon.com, Barnesandnoble.com (Available in stores), Borders .com (Available in stores)

Perspectives on Grief and Loss

A Grief Observed by C. S. Lewis

This book inspired the film Shadowlands [26], but it is more wrenching, more revelatory, and more real than the movie. It is a beautiful and unflinchingly honest record of how even a stalwart believer can lose all sense of meaning in the universe, and how he can gradually regain his bearings.

Ambiguous Loss: Learning to Live with Unresolved Grief by Pauline Boss

Boss, a psychotherapist and professor of family social science at the University of Minnesota, explores ambiguous loss, a common and painful condition that affects, among others, people caring for someone perceived to be psychologically absent but physically present such as in dementia and FTD.  She encourages families to talk with each other to mourn what has been lost and celebrate what remains as a way to foster acceptance and strength.

Publisher: Harvard University Press, 2000

Available at: Amazon.com, Barnesandnoble.com (Available in some stores), Borders .com (Not available in stores)

Dying Well by Dr. Ira Byock

A  long time palliative care physician and advocate for improved end-of-life care, provides insight into the process of dying that leaves the reader prepared to face that certainty with less fear and more hope. The book provides inspiring case studies and written resources as well as lists of organizations, web sites and books to empower persons with life threatening illness and their families to live fully, even in the face of a terminal illness.

Publisher: Penguin Group (USA) Inc., 1998

Available at Amazon.com; Borders.com and BarnesandNoble.com

Final Gifts by Maggie Callanan and Patricia Kelley

In this compassionate book, hospice nurses Maggie Callanan and Patricia Kelley share their intimate experiences with patients at the end of life, drawn from more than twenty years experience with the terminally ill. Their stories convey the near-miraculous ways in which the dying communicate their needs, reveal their feelings, and even choreograph their own final moments; we also discover the gifts—of wisdom, faith, and love—that the dying share. This book offers practical advice on responding to the requests of the dying and helping them prepare emotionally and spiritually for death.

Publisher: Bantam 1997

Available at Amazon.com; Borders.com and BarnesandNoble.com

Living with an Empty Chair: A Guide Through Grief by Roberta Temes

Winner of the National Psychological Award for Excellence. This sensitive explanation of ways to cope with death has been welcomed by clergy, psychologists, bereavement counselors and those touched by sorrow.

Publisher: Irvington Publishers, 1984

Available at: Amazon.com, Barnesandnoble.com (Not available in stores), Borders.com (Not available in stores)

Tuesdays with Morrie by Mitch Albom

Mitch Albom rediscovered Morrie in the last months of the older man’s life. Knowing he was dying, Morrie visited with Mitch in his study every Tuesday, just as they used to back in college. Their rekindled relationship turned into one final “class”: lessons in how to live.

Publisher: Broadway, 2002

Available at: Amazon.com, Barnesandnoble.com (Available in stores), Borders .com (Not available in stores)

When Bad Things Happen to Good People by Harold S. Kushner

Kushner, a Jewish rabbi facing his own child’s fatal illness, deftly guides us through the inadequacies of the traditional answers to the problem of evil, then provides a uniquely practical and compassionate answer that has appealed to millions of readers across all religious creeds. This book cannot go unread by anyone who has ever been troubled by the question, “Why me?”

Publisher: Anchor, 2004

Available at: Amazon.com, Barnesandnoble.com (Available in stores), Borders .com (Available in stores)

Neurological and Philosophical Texts

Descartes’ Error by Antonio Demasso

Neurologist Damasio’s refutation of the Cartesian idea of the human mind as separate from bodily processes draws on neurochemistry to support his claim that emotions play a central role in human decision making

Publisher: Penguin, 2005

Available at: Amazon.com, Barnesandnoble.com (Limited availability in stores), Borders .com (Available in stores)

Looking for Spinoza by Antonio Demasso

Of the tremendous scientific revolutions in the past hundred years, understanding how the mind rules us is only now coming to the fore. Dr. Antonio Damasio, Professor and head of the department of neurology at the University of Iowa Medical Center, has published the third in his series of books that attempts to popularize key parts of that breakthrough.

Publisher: Mariner Books, 2003

Available at: Amazon.com, Barnesandnoble.com (Availability in some stores), Borders .com (Available in stores)

The Emotional Brain by Joseph LeDoux

For the layperson, LeDoux’s book is an excellent account of the scientific search for understanding what emotions are and what they do. For psychologists, particularly psychotherapists, this book should be required reading.

Publisher: Simon & Schuster, 1998

Available at: Amazon.com, Barnesandnoble.com (Available in stores), Borders .com (Limited availability in stores)

The Secret Life of the Brain by Richard Restak

This companion volume to a PBS series presents an engaging introduction to the development of the human brain. Neuropsychiatrist Restak has already demonstrated his ability to describe complex neurological processes in fascinating and comprehensible language. Here he uses interviews, case studies, and clinical research to explore five stages of brain development.

Publisher: Joseph Henry Press, 2001

Available at: Amazon.com

The Synaptic Self by Joseph LeDoux

To Joseph LeDoux, the simple question, “What makes us who we are?” represents the driving force behind his 20-plus years of research into the cognitive, emotional, and motivational functions of the brain.

Publisher: Penguin, 2003

Available at: Amazon.com, Barnesandnoble.com (Available in stores), Borders.com (Available in stores)

The Wisdom Paradox by Elkhorn Goldberg

This is a very well-written, readable, and interesting book that incorporates some of the latest information about brain neurology, consciousness, and memory. Goldberg presents complex information in an easy to understand way.

Publisher: Gotham, 2006

Available at: Amazon.com, Barnesandnoble.com (Not available in stores), Borders.com (Available in some stores)

This list is compiled from recommendations made by caregivers.  If you have a book you would like to suggest, please email info@theaftd.org [9].  For a list of books written by friends of AFTD please see Published Tributes under Sharing our Stories.