Recommended Reading/Viewing

AFTD Educational Webinars

Corticobasal Syndrome & Corticobasal Degeneration: Basics & What You Need to Know: Dr. Melissa Armstrong of the University of Florida (Gainesville) provides an in-depth look at corticobasal syndrome (CBS) and corticobasal degeneration (CBD). She discusses the vocabulary used in this disease (what’s the difference between the syndrome and degeneration?), how a diagnosis is made, common symptoms, expected progression, and treatment approaches.

Bringing the ALS FTD Clinical Experience into Focus: Dr. Beth Rush of the Mayo Clinic in Florida provides an in-depth look at the ALS-FTD overlap experience. She examines ideal approaches for monitoring and responding to symptoms over time, and explores opportunities for the clinical experience to evolve and better reflect the rapidly evolving understanding of ALS-FTD overlap.

What You Should Know About Primary Progressive Aphasia (PPA): Dr. Emily Rogalski of Northwestern University explores aspects of primary progressive aphasia that all persons living with FTD, their families and their healthcare providers should know.

What You Should Know About Behavioral Variant FTD (bvFTD): Dr. Nupur Ghoshal from Washington University in St. Louis addresses clinical signs and symptoms and the latest in diagnosis and treatment of the disorder. She introduces bvFTD pathology and genetics and discusses their relevance to current and emerging areas of research.

An Overview of FTD Genetics and the Role of Genetic Counseling: Emily Dwosh from UBC Hospital Clinic for Alzheimer Disease and Related Disorders explores how genetic counseling can help support individuals and families as they adjust to an FTD diagnosis.

Stimulating the Brain to Preserve the Mind: Dr. Roy Hamilton of the University of Pennsylvania describes two types of noninvasive brain-stimulation technologies — transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) — and addresses their potential role in the assessment and treatment of FTD disorders.

The FTD Disorders Registry and How It Can Advance Research: Dr. Dianna Wheaton explains the mission and objectives of the FTD Disorders Registry, a unique patient registry that gives researchers an unprecedented look at FTD as it is actually experienced by caregivers, family members and persons diagnosed.

Behavioral Variant FTD Subtypes — Divergent Anatomy, Divergent Behavior: Dr. Kate Rankin of the University of California, San Francisco explores how different physical dysfunctions within the brain correspond to symptoms of the four distinct sub-types of behavioral variant FTD (bvFTD).

A Care Paradigm for Persons with Frontotemporal Degeneration: Dr. Alvin Holm of the Cognitive and Behavioral Disorders Program at Bethesda Hospital (St. Paul, Minn.) explores how FTD treatment benefits from an integrated and comprehensive approach. Learn how symptom-specific therapies, wellness management and environmental support can help caregivers manage FTD care more effectively.

The Journey to an FTD Diagnosis: Dr. Brad Boeve of Mayo Clinic explores cases of patients with varying ages and backgrounds, to help you better understand how doctors arrive at an FTD diagnosis.

More video content, including short films, public service announcements, and recordings from AFTD Education Conferences — is available at the AFTD YouTube channel.

Books

Introduction to Frontotemporal Degeneration

What if it’s Not Alzheimer’s, edited by Lisa Radin and Gary Radin (updated and revised in 2014)
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, from medical facts exploring the differences between FTD and Alzheimer’s, to clinical, medical and rehabilitation care issues.

The Banana Lady and Other Stories of Curious Behavior and Speech, by Dr. Andrew Kertesz (2006)
Dr. 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.

Faithful as She Fades: A Memoir of Love and Dementia, by Robert Fischbach (2019)
Faithful as She Fades is the first-person account of Robert Fischbach’s journey as a caregiver to his longtime beloved wife throughout her relentless battle with FTD. Fischbach takes the reader on a heartfelt, emotional, sometimes funny and always moving journey through the decades he spent with his wife — and then through the near-decade in which he slowly had to let her go. A story of devastating loss, everyday heroism, resilience and faithfulness, this book is an insider’s look into one of the most terrible illnesses with which a person can be afflicted. A portion of sales benefit AFTD’s mission.

The Dance: Our Journey Through Frontotemporal Degeneration, by Deborah G. Thelwell (2014)
The Dance is a memoir of a couple’s five-year journey through FTD. Deborah and Alan’s story – and how they handled this challenge together and with the help of their family and friends — is told with honesty, humor, and love.

Experience with FTD Clinical Presentations

Behavioral Variant FTD (bvFTD)

When Love Meets Dementia: Frontotemporal Degeneration (FTD) and the Family, by Ada Anbar (2018)
The author traces the long journey to her husband’s FTD diagnosis and its subsequent impact on their family. The book offers detailed information on FTD, along with advice to care partners for self-care during their FTD journey.

Beagle on Board, by Brad Bawmann (2018)
In this book, the Bawmanns struggle to get a proper diagnosis for family patriarch Ronnie’s perplexing behavior; he is eventually diagnosed with bvFTD. The family endeavors to find appropriate care for him and come to grips with having a poorly understood neurodegenerative disease in their lives. (After death, Ronnie’s autopsy revealed Alzheimer’s pathology.)

Green Vanilla Tea: One Family’s Extraordinary Journey of Love, Hope and Remembering, by Marie Williams (2014)
In Green Vanilla Tea, Marie Williams writes poignantly of her husband Dominic’s struggles with amyotrophic lateral sclerosis (ALS) with FTD at the age of 40, and how she and her sons found hope amidst the wreckage of a mysterious neurological condition.

A Wife’s Caregiver Saga: Facing Frontotemporal Dementia, by Diane Ries Keller (2018)
Diane Ries Keller’s husband was in his early sixties when diagnosed with FTD. A Wife’s Caregiver Saga is based on the notes she took over the years as she struggled to get a diagnosis for his odd behavior, took care of his needs as the disease progressed, and managed his care as he moved into facilities that could accommodate his deteriorating medical condition. In sharing her family’s story, Diane hopes to increase FTD awareness and help others facing the disease feel less alone.

Corticobasal Degeneration (CBD)

Finding Meaning with Charles: Caregiving with Love Through a Degenerative Disease, by Janet Edmunson (2006)
The author offers a resource for caregivers, hospice volunteers and staff. It includes guides for dealing with doctors, telling friends and family, learning more about the disease, and coping with the emotional and physical challenges faced during the course of a loved one’s illness.

Primary Progressive Aphasia (PPA)

Where the Light Gets In: Losing My Mother Only to Find Her Again, by Kimberly Williams-Paisley (2017)
Williams-Paisley tells the full story of her mother’s struggle with primary progressive aphasia (PPA), from her diagnosis to the present. She draws a candid picture of the ways her family reacted, educated themselves, tried to let go of shame and secrecy, and found unexpected humor and grace in the midst of suffering.

Green Nails and Other Acts of Rebellion: Life After Loss, by Elaine Soloway (2014)
The author has previously published other works, and in Green Nails and Other Acts of Rebellion, Elaine Soloway provides a glimpse into the life of a wife who becomes a caregiver after her husband Tommy receives a diagnosis of FTD. The story of his disease’s progression is one that manages to be uplifting while revealing the daily struggles of being caregiver and wife to someone with an incurable illness.

Works by Persons Diagnosed

What the Hell Happened to My Brain?, by Kate Swaffer (2016)
Kate Swaffer was just 49 years old when she was diagnosed with semantic PPA. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia.

Dancing with Dementia: My Story of Living Positively with Dementia, by Christine Bryden (2005)
This book is a vivid account of the author’s experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks.

Guides for Care Partners

The Dementia Care-Partner’s Workbook, by Edward Shaw, M.D. (2019)
This workbook is a combination of practical, emotional, intellectual, social, and spiritual support for people caring for a loved one with dementia. It provides individual family members with greater awareness, knowledge, and skills to improve life, relationships, and care throughout the disease process.

Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End, by Tia Powell, M.D. (2019)
Dementia Reimagined is a moving combination of medicine and memoir. Ultimately, Dr. Powell wants us all to know that dementia is not only about loss – it’s also about the preservation of dignity and hope.

A Dignified Life: The Best Friends Approach to Alzheimer’s Care, by Virginia Bell, MSW, and David Troxel, MPH (2002)
A compassionate approach to understanding people who have Alzheimer’s disease or related dementias. The authors stress that persons diagnosed are usually confused, not malevolent or willful, and share ways to keep situations from worsening, while enhancing peace of mind for caregiver and person diagnosed alike.

The Common Sense Guide to Dementia for Clinicians and Caregivers, by Drs. Anne M. Lipton and Cindy D. Marshall (2013)
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.

Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, by Pauline Boss (2011)
Boss, a psychotherapist and professor of family social science at the University of Minnesota, offers research-based advice on how to manage ongoing stress and grief, while caring for someone with dementia.

The Caregiver’s Path to Compassionate DecisionMaking, by Viki Kind, M.A. (2010)
Feeling confident that you are making the right decisions for a loved one can be a difficult component of caregiving for families and professionals alike. This book offers tools and techniques that will limit your frustration and fears and help you make informed, respectful decisions.

Ambiguous Loss: Learning to Live with Unresolved Grief, by Pauline Boss (2011)
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.

The 36-Hour Day, by Nancy Mace and Peter Rabins, MD (revised and updated in 2012)
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.

A Wife’s Caregiver Saga: Facing Frontotemporal Dementia, by Diane Ries Keller (2018)
Diane Ries Keller’s husband was in his early sixties when diagnosed with FTD. A Wife’s Caregiver Saga is based on the notes she took over the years as she struggled to get a diagnosis for his odd behavior, took care of his needs as the disease progressed, and managed his care as he moved into facilities that could accommodate his deteriorating medical condition. In sharing her family’s story, Diane hopes to increase FTD awareness and help others facing the disease feel less alone.

DVDs

Planning for Hope-Living with Frontotemporal Disease is a moving documentary created by Susan Grant, who is diagnosed 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.

Disordered is a three-part documentary depicting the ways FTD has changed the lives of three people – as well as those around them. The filmmakers, Klaas Jansma and Pieter Wolswijk, are respectively a psychologist involved in the Dutch National Steering Committee for Young People with Dementia and a geriatric psychologist. This documentary is an initiative of the Intercollegiate Group of Geriatric Psychologists in the Arnhem Region, the Netherlands. Email [email protected] for ordering information.

Blogs/Stories

These blogs and vignettes are shared with us by members of our community whose unique perspectives offer support, encouragement and truly honest responses to others going through similar experiences. We appreciate their generosity in sharing some of their intimate thoughts, emotions, and experiences, and recognize that it is through this generosity that we will all find the comfort and support of community.

If you have a blog or story you would like to share, please contact us at [email protected].

Turning Six Thousand – Kimberly Chu documents her family’s FTD journey through a picture a day. Her mother, who was diagnosed with FTD in the Fall of 2010 , has been living with Kimberly, her husband and their young son full-time since 2012.

The Johnson Blog – Amy Johnson writes this detailed and personal blog about her family’s FTD journey following her husband Mark’s diagnosis in October 2017 at age 38.

FTD Doesn’t Bring Me Flowers: Living with FTD – Cindy Odell has been living with FTD since 2011. In her regularly updated blog, she hopes “to offer information and insight into dealing with having FTD, or dealing with someone who has it.”

PPA Communications Strategies – Joanne Douglas, who lives with primary progressive aphasia, offers strategies that she finds helpful to communicate with others (Part I, Part II), and suggests methods that those who aren’t diagnosed can use to better communicate with persons diagnosed.

Click here to read Joanne’s first-person account of adapting to PPA, published in the American Journal of Alzheimer’s Disease and Other Dementias in 2014, and click here to read a 2012 interview with Joanne. Email Joanne at joanne.douglas.ppa at gmail.com.

Aphasialand – This poignant blog series, written in German by Silvia Teich, details the difficult struggles that FTD can bring to a family. Ms. Teich is a wife and mother whose husband was affected with Primary nonfluent primary progressive aphasia in September 2016. The couple have two children aged 5 and 15, and live in Berlin. Read Silvia’s blog posts here.

Songs Without Words – Written by Sarah Scheuermann, who passed away from PPA in 2016, this well-written and thought-provoking blog series gives the reader insight into how it feels to battle FTD from the perspective of the person affected. Read Sara’s beautiful blog posts, poems and verses here.

Go to Your Corners and Come Out Loving – This blog was written by Ada Gerard, wife to Gary who at 65 years old, was diagnosed with FTD. Still working full-time as Executive Director for West Coast University, Ada shares her daily struggles with coming to terms with her husband’s diagnosis.

The Unlikely Caregiver: Caregiving as a twenty-something daughter – When Abigail was 24, she moved back in with her parents, noting, “It wasn’t because I was broke or unemployed, instead it was because my mom’s Frontal Temporal Lobe Dementia was progressing quickly and my dad needed backup.”

Lydia’s FTD House – Lydia’s sister blogs to create a support community for all to share FTD-related experiences and information. The ultimate goal is to help others recognize the symptoms of FTD and shorten the time to a correct diagnosis and help.

Chasing Dignity – Cindy, whose mother-in-law has FTD, blogs about her family’s journey coping with the disease and adjusting to their new reality.

Frontotemporal Degeneration: Tumbling down the rabbit hole – Alice, whose husband was recently diagnosed with FTD, writes about her journey.

A Nice Day for a Hike – a blog by Brandon and Katherine, as they hike the 2,200 mile Appalachian Trail in memory of Brandon’s dad, who had FTD.

Dementia: Stuck in Between – a thoughtful blog by a group of 20- and 30-somethings who have a parent affected with FTD.

Putting One Foot in Front of the Other – a blog by Nancy Carlson, author/book illlustrator whose husband has FTD.

FTD is my niche (apparently!) – a blog by Deborah Thelwell, whose husband has FTD.

Dr. Patty’s Blog – Dr. Patricia Bay writes about her husband’s recent diagnosis of FTD.

FTD’s Painful Road – a blog by Kendra Gibson, whose mother has FTD/ALS, whose uncle passed away from the same disorder and whose aunt passed away from ALS.

Journey with Dementia – a blog by Cassandra Jones, whose mother has semantic dementia.

The Rookie Caregiver – a blog by writer and PR professional Elaine Soloway, whose husband was affected with primary progressive aphasia.

FTD Isn’t Just Flowers Anymore – a blog by Kelly on the West Coast about her affected father.

Rest.Stop.Ranch – an eco-spiritual blog by Mary MacDonald, whose mother had FTD.  This blog features some short (2-5 minute) guided “breaks” with photos, breathing exercises, and other calm-inducing techniques.

Caring Bridge Blog by Lorraine Cox – a blog about her husband’s struggle with FTD.

Matt Matherne – a blog written by Matt’s wife, Amy.  Matt is affected with FTD.

Don’s Daughter – a blog written by Melisa McElmurray, whose father is affected with FTD.

FTD/Dementia Support Group – a blog written by FTD patient Howard Glick.  A first-person look at living with FTD.

Cindy’s Life Updates with Frontemporal Dementia – a blog maintained by Natalie, whose mother Cindy is living with an FTD diagnosis. Natalie’s goal is to help at least one person and to help shed light on this disease.

Published Tributes

Many people find writing to be a valuable way to process their experiences while caring for a family member or friend who has FTD. These books have been written to honor a loved one, or share personal perspectives of the impact of FTD.

My Walk with My Sister: On the Journey of Frontotemporal Degeneration, by Karen Boothe
Karen’s sister, Brenda, was diagnosed at age 56 with FTD after family, friends and colleagues noticed changes in her behaviors. Karen became Brenda’s primary caregiver, and along with loved ones, they walked the journey of FTD together. She documented that journey in this book in hopes to provide comfort to families who love someone with FTD, and to know, that your journey is never walked alone. Purchase at: Amazon and Barnes & Noble

Griefwriting, By Joan Zlotnick
The author was a caregiver for 12 years to her husband, who suffered from FTD. She writes: “After his death three years ago, I found solace and healing through writing my book, which is about a recently widowed English professor (not unlike myself) who teaches a therapeutic writing course.” Zlotnick’s work explores themes of caregiving, loss, grief, and the redefinition of the self after traumatic loss. Find a link to this Kindle e-book – as well as testimonials from readers – here.

The Dance: Our Journey Through Frontotemporal Degeneration, By Deborah G. Thelwell
The Dance is a memoir of a couple’s five-year journey through FTD. Deborah and Alan’s story, and how they handled this challenge together and with the help of their family and friends, is told with honesty, humor and love. Purchase at: Amazon.com and Barnesandnoble.com

Dementia: The Journey Ahead, By Susan Kiser Scarff
Within a year of receiving her husband’s diagnosis, Susan Kiser Scarff had a classic case of caregiver burnout. She couldn’t concentrate at work. Friends drifted away. Overwhelmed, she struggled to make the transition from Red’s wife to his protector, nurse, and mother. Purchase through: the book’s website.

Green Nails and Other Acts of Rebellion, Life After Loss, by Elaine Soloway
The author has previously published other works, and in Green Nails and Other Acts of Rebellion, Elaine Soloway provides a glimpse into the life of a wife who becomes a caregiver after her husband receives a diagnosis of FTD. With symptoms beginning about ten years after their marriage, Tommy’s diagnosis offered an explanation that changed the dynamic of the relationship. The story of husband Tommy’s progression and ultimate demise is one that manages to be uplifting while revealing the daily struggles of being caregiver and wife to someone with an incurable illness. Purchase at: Amazon.com and Barnesandnoble.com

Strange Relation: A Memoir of Marriage, Dementia and Poetry, by Rachel Hadas
In 2004 Rachel Hadas’s husband, George Edwards, a composer and professor of music at Columbia University, was diagnosed with early-onset dementia at the age of sixty-one. Strange Relation is her account of “losing” George. Her narrative begins when George’s illness can no longer be ignored, and ends in 2008 soon after his move to a dementia facility (when, after thirty years of marriage, she finds herself no longer living with her husband). Within the cloudy confines of those difficult years, years when reading and writing were an essential part of what kept her going, she “tried to keep track…tried to tell the truth.” Purchase at: Amazon.com

Dueling with Dementia: Not the Love Story We Planned, by Kate Fritz Leonard
Kate Fritz Leonard is a wife, mother, friend, educator and now caregiver, who was living a happily-ever-after life with her husband and children until dementia took over her husband’s brain and he became a stranger in their home.  Kate writes about her family’s journey into the strange and scary world of dementia, and how she and her children, with much love and laughter, are coping and thriving together while dueling with their loved one’s dementia. Purchase at: Amazon.com

An Evolution of Love: Life and Love with FTD, by Marie Sykes and Michelle Stafford
Bob Sykes passed away on April 7, 2006 from frontotemporal degeneration (FTD) at the age of 50.  He struggled mightily with this illness and his wife and daughter struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia. Purchase at:  www.anevolutionoflove.com or Amazon.com

And Two Shall Become One, by Jim Cardosi
After the death of his wife Cindy in July 2008, Jim Cardosi wrote this book for his children to honor her memory.  Written as a tribute their love and commitment to each other, Cardosi portrays the spirit of a woman fully devoted to her family and her faith. (A portion of the proceeds of sales of this book will be donated to AFTD). Purchase at Amazon.com or www.allbookstores.com

Dementia: The Monster Within, by Herb van Roekel
This book shares story of one family’s battle through five generations of the Monster, along with the stories of others who have met the Monster. It provides a framework of essential steps necessary to prepare both caregiver and victim for the future. It also shows the types of dementia and some of the science involved to help give understanding. “While we dare not offer false hope, there is every reason to have hope…” for finding a cure. Purchase at: Amazon.com

I Can’t Hear the Music Anymore: One Family’s Journey with Frontotemporal Dementia, 2nd edition, by Linda Anne Bentz Parsons
The author tells the story of her husband, Douglas Parsons, who has FTD. Short practical chapters tell of changes in independence, social interaction, reasoning and judgment, as well as caregiving issues.  The book is written to give faith and hope that people are not alone in their journey with FTD. To purchase send $10 check or money order to Linda A. Parsons, 222 Chicago Place NW, Canton, Ohio 44703 or email or at: [email protected]

If you have published a book or memoir that you would like to share with others, please let us know at [email protected] or 866-507-7222.