Frontotemporal dementia

FTD banner#6

Frontotemporal dementia (FTD), also referred to as frontotemporal degeneration, is a spectrum disorder  describing a range of conditions that affect the frontotemporal lobes. FTD typically affects younger people, with symptoms often beginning in people’s fifties or sixties or even younger.

The different frontotemporal dementias can be divided into three broad categories; behaviour, language (referred to collectively as primary progressive aphasia or PPA), and movement.

ftd spectrum


 

Dementia Australia support and resources

Dementia Australia and the Australian Frontotemporal Dementia Association (AFTDA) have joined forces to increase access to support for people living with frontotemporal dementia, their families and carers.

Read the full media release

Visit the Dementia Australia web pages on frontotemporal dementia


 

greeennailsGreen Nails and Other Acts of Rebellion: Life After Loss by by Elaine Soloway (2012)

After more than a decade of marriage, Elaine Soloway’s husband, Tommy, began to change—exhibiting inappropriate behaviors at times, becoming inexplicably weepy at others. More troublesome, he began to have difficulty finding words. Ultimately, Tommy’s doctors discovered that he had frontotemporal degeneration—a diagnosis that explained Tommy’s baffling symptoms and transformed Soloway from irritated wife to unflappable, devoted caregiver in one fell swoop. In Green Nails and Other Acts of Rebellion Soloway documents Tommy’s deteriorating health and eventual death, shedding light on the day-to-day realities of those who assume the caregiver role in a relationship with uncompromising honesty and wry humor.

Available from the Dementia Australia library in hard copy or Ebook


greenvanillatea.jpgGreen Vanilla Tea: One Family’s Extraordinary Journey of Love, Hope, and Remembering by Marie Williams (2014)

 Marie Williams writes poignantly of her husband Dominic’s struggles with early onset dementia and amyotrophic lateral sclerosis (ALS) at the age of 40, and how their family found hope amidst the wreckage of a mysterious neurological condition.
 
As the condition develops and progresses, the normally devoted family man and loving partner seems to disappear beneath an expressionless facade, erratic behavior, and a relentless desire to wander that often leaves him lost. The road to diagnosis is long and confusing, and what starts off as perplexing for the family then becomes frightening. The man they love is changing, and no one seems to know why. He no longer turns up to his sons’ high school events. He falls and bumps into things. He becomes verbally disinhibited, emotionally disengaged, and, at times, belligerent. He doesn’t seem to be able to read the social cues of other people. He gets lost in familiar places, as well as on obsessive work trips overseas. He recklessly spends the family money, leaving them in near financial ruin. Despite this, Williams and her children strive to find new ways to keep him safe and to connect with the husband and father they love so dearly.

Available from the Dementia Australia library in hard copy or Ebook


 

where the light gets inWhere the Light Gets In: Losing My Mother Only to Find Her Again by Kimberly Williams-Paisley 

Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies, the calculating Peggy Kenter on Nashville, or the wife of country megastar Brad Paisley. But in 2014, Williams-Paisley revealed a tragic secret: her mother had been diagnosed with a rare form of dementia called primary progressive aphasia at the age of sixty-one.In Where the Light Gets In, Williams-Paisley tells the full story of her mother’s illness, from diagnosis through the present day, drawing on her memories of her relationship with the fascinating, complicated, and successful woman who raised her so well. She describes educating herself on her mother’s condition, letting go of the shame and secrecy that surrounded it, and finding unexpected humor and grace in a terrible situation. Her book also chronicles the ways in which her family’s bond was strengthened by the experience, to becoming an awareness advocate, to accepting the woman her mother has become.

Available from the Dementia Australia library in hard copy or Ebook


when love meets dementia

When Love Meets Dementia : Frontotemporal Degeneration (FTD) and the Family/ Ada Anbar (2019)

This volume examines FTD from a few angles, beginning with the author’s insightful memoir of her husband’s struggle with FTD and its impact on their family. Detailed background information on the disease is provided along with discussion of related issues.

Available from the Dementia Australia library in hard copy or Ebook


 

hodges frontotemporal dementiaHodges’ Frontotemporal Dementia  /  Dickerson, Bradford C. [ed.]  (2016)

Clinical and scientific interest in FTD and related disorders continues to grow rapidly, with major advances having occurred since this book’s last publication. New clinical diagnostic criteria were published in 2011; new pathological discoveries have led to new diagnostic criteria; and major genetic discoveries have been made. This new edition covers these developments, providing the leading resource on FTD, PPA, PSP, CBD, FTD-ALS, and related disorders, now written by a more internationally representative group of authors than before. Providing an in-depth and expert synthesis of the status of our knowledge of FTD and related syndromes, the content includes chapters reviewing clinical, neuropsychiatric, neuropsychological, imaging, and other features of FTD and multidisciplinary approaches to patient management.

Available from the Dementia Australia library


frontotemporal-dementia_2014Frontotemporal dementia by Bruce L. Miller (2014)

Frontotemporal Dementia provides an in-depth look at the history, various types, genetics, neuropathology and psychosocial aspects of one of the most common but least understood causes of dementia, frontotemporal lobar degeneration, from one of the world’s leading centres for the study of dementia. Aided by the latest research in diagnosis, mechanism and treatment, this book captures the rich and quickly changing landscape of a devastating neurodegenerative disease, and offers up-to-date clinical advice for patient care. Frontotemporal dementia, in particular, raises psychological and philosophical questions about the nature of self, free will, emotion, art and behaviour – important topics for practitioners and families to appreciate as they care for the person with dementia. This book includes case studies, photographs and figures from the leaders in the field and personal communication from the researchers driving these developments.

Available from the Dementia Australia library


human frontal lobeThe human frontal lobes : functions and disorders edited by Bruce L. Miller and Jeffrey L. Cimmings.  (2017)

Leading experts from multiple disciplines address the anatomy and chemistry of the frontal cortex, neuropsychological assessments of capabilities unique to the frontal lobes, the nature of (and possible treatment avenues for) frontotemporal dementia and related conditions, and implications for understanding and treating neuropsychiatric disorders, such as schizophrenia, mania, and depression.

Available from the Dementia Australia library


Websites

FTD Toolkit – Eastern Region Cognitive Disorders Clinic

ER FTD toolkit

The toolkit is organised into a series of stand-alone modules. Accompanying power point presentations for the main modules will be due for release by the end of 2011. The modules are designed to provide accessible summary level information without overwhelming amounts of specialist detail. Presentations may be used to train health professionals or provide community information sessions. All modules include reference to scientific publications, websites, and other resources where indicated.


The Association for Frontotemporal Degeneration (America)

This site has  easy to read helpsheets about some of the FTD sub-types and information about the FTD Disorders Registry (FTDDR) an international contact registry for people living with FTD and their families who would like to receive information updates about FTD and current research.

Visit website

 


Video

What is frontotemporal dementia? – Alzheimer’s Society UK (2017)

 


 

teepa snow_understanding frontotemporal dementiasUnderstanding Frontotemporal Dementias  /  with Teepa Snow  (2014)

Learn with Teepa Snow – Why proper screenings truly matter, and where to get them – About causes and symptoms of different types of FTDs – Which changes happen in the brain, and how they affect the person with FTD – How to deal with challenging behaviors without sacrificing the relationship – Which medications can help or potentially cause harm – How to best manage the disease with current treatment options – Why supportive communication and a positive physical approach are vital to offer the greatest quality of life, for the person with FTD and caregiver alike.

Preview


looks-like-lauryLooks like Laury, sounds like Laury (2015)

At the age of 45,  Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.
This film captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.
The film came about when her friend Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!”
Preview


Recent articles

Frontotemporal dementia: how we are failing families  /  Lynne Ramsay, F Katharina Reichelt and Ian James  (2019)
Frontotemporal dementia often manifests itself in behavioural changes rather than memory defects, yet it may go unrecognised. The consequences can be disastrous.
The Journal of Dementia Care Vol 27 No 1 January/February 2019 p.30-31

Frontotemporal dementia: the real lived experience  /  Reinhard Guss & colleagues  (2018)
Severe symptoms are to be expected in people with behavioural variant frontotemporal dementia, at lease according to the official diagnostic criteria. But is this always the lived experience? Interviews conducted which told a rather different story.
The Journal of Dementia Care Vol 26 No 5 September/October p. 28-30

Take the time to understand  /  Dennis Frost  (2018)
An excerpt of a speech at an event hosted by Dementia Australia, Parliamentary Friends of Dementia, at which presenters spoke about living with dementia. Dennis Frost was diagnosed with frontotemporal dementia shortly after his 59th birthday.
Australian Journal of Dementia Care Vol 7 No 4, Aug/Sep 2018, p10-11

 

Available from the Dementia Australia library

 

2018 LIBRARY digital footer

World FTD Awareness Week – 25 September to 2 October 2016

Frontotemporal dementia (FTD) is an umbrella term used to describe a group of younger onset neurodegenerative conditions with a typical onset between the ages of 45 and 65 years. This diverse group of uncommon disorders primarily affects the frontal and temporal lobes of the brain — the areas generally associated with personality, behaviour and language.

FTD is life-altering for those affected as well as for their loved ones.  Yet this disease is little known and poorly understood.

This week marks the second annual World FTD Awareness Week.  In support of this, we are posting a small collection of resources on FTD that we hope will be of interest to our readers.

Alzheimer’s Australia Helpsheet Frontotemporal dementia (rev 2016)helpsheets-aa

This Help Sheet describes  frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.

 

Alzheimer’s Australia Video: What is  Frontotemporal dementia?

livingwithd_what-is-ftd

Book: What if it’s not Alzheimer’s : a caregiver’s guide to dementia
3rd ed /  edited by Lisa Radin & Gary Radin (2014)

what-if-its-not-alzheimers

This book is a comprehensive guide dealing with frontotemporal degeneration (FTD. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD.
Beginning with a focus on the medical facts, the first part defines and explores FTD as an illness distinct from Alzheimer s disease.
The next section on managing care examines the daily care routine including exercise, socialization, adapting the home environment, and behavioural issues.
The final section focuses on the caregiver, in particular the need for respite and the challenge of managing emotions.
This completely revised edition follows recent worldwide collaboration in research and provides the most current medical information available, a better understanding of the different classifications of FTD, and more clarity regarding the role of genetics.

where-the-light-gets-inBook: Where the Light Gets in : Losing My Mother Only to Find Her Again
by Kimberly Williams-Paisley , Foreword by Michael J Fox (2016)

Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the”Father of the Bride”movies, the calculating Peggy Kenter on”Nashville,” or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. Where the Light Gets In tells the full story of Linda’s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, Where the Light Gets In is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.

green-vanilla-tea_smlBook: Green Vanilla Tea
by Marie Williams (2013)

When Marie Williams’ husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time — when gradually Dominic’s behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world. Her book, Green Vanilla Tea, was the winner of the 2013 Finch Memoir Prize.

In a compelling story that spans both joy and sadness, Marie Williams writes about the bonds in her family, her sons’ love for their father, the spirit that sustains them all during the most testing of experiences and about the struggle they faced in dealing with the inexplicable. Green Vanilla Tea is a story of compassion and courage in the face of a little understood illness. Above all, it is a love story.

ftd-toolkitWebsite: The FTD Toolkit by Eastern Cognitive Disorders Clinic

This website supports those wishing to better understand FTD. Information is divided into downloadable modules and also includes specific information on FTD as a younger onset dementia.

 

looks-like-lauryDVD: Looks like Laury sounds like Laury
by Pamela Hogan & Connie Shulman (2015)

What would you do if you started to disappear?
At the age of 45, Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Laury lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.
Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

Filming started during a hopeful period, with no idea of what lay ahead.
Laury was always a storyteller and she wanted to tell her last story herself. This is her story.

aftda-websiteWebsite: The Australian Fronto-Temporal Dementia Association

A useful website for those looking to get more involved in supporting those with FTD and promoting awareness of FTD.

 

activities-for-the-family-caregiver-ftdBook: Activities for the Family Caregiver : Frontotemporal Dementia
by Scott Silknitter, Vanessa Emm and Robert Brennan

From the groundbreaking series written specifically for family caregivers, Activities for the Family Caregiver – Frontotemporal Dementia / Frontal Lobe Dementia / Pick’s Disease: How to Engage / How to Live offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure. Discover how to turn daily activities and routines into opportunities to start some joy. Written by nationally recognized leaders in activities for those with cognitive disabilities, Activities for the Family Caregiver – Frontotemporal Dementia / Frontal Lobe Dementia / Pick’s Disease: How to Engage / How to Live provides much-needed information to address the unique social needs of those with frontotemporal dementia and those who care for them.

green-nailsBook: Green Nails and Other Acts of Rebellion
by Elaine Soloway (2014)

Early in 2009, after more than a decade of marriage, Elaine Soloway’s husband, Tommy, began to change exhibiting inappropriate behaviors at times, becoming inexplicably weepy at others. More troublesome, he began to have difficulty finding words. Ultimately, Tommy’s doctors discovered that he had frontotemporal degeneration a diagnosis that explained Tommy’s baffling symptoms and transformed Soloway from irritated wife to unflappable, devoted caregiver in one fell swoop. In Green Nails and Other Acts of Rebellion Soloway documents Tommy’s deteriorating health and eventual death, shedding light on the day-to-day realities of those who assume the caregiver role in a relationship with uncompromising honesty and wry humor. Charming, frank, and ultimately uplifting, Soloway’s story reveals how rich with love and appreciation a life compromised by an incurable illness can be and how even widowhood can open a door to a new, invigorated life.

teepa-snow_understanding-frontotemporal-dementiasDVD: Understanding Frontotemporal Dementias
by Teepa Snow (2014)

Frontotemporal Dementias (FTDs) are particularly challenging for families and professional caregivers. Odd, often impulsive behaviors and potential loss of language are just a few symptoms causing frustration and anxiety.

Learn with Teepa Snow
– Why proper screenings truly matter, and where to get them
– About causes and symptoms of different types of FTDs
– Which changes happen in the brain, and how they affect the person with FTD
– How to deal with challenging behaviors without sacrificing the relationship
– Which medications can help or potentially cause harm
– How to best manage the disease with current treatment options
– Why supportive communication and a positive physical approach are vital to offer the greatest quality of life, for the person with FTD and caregiver alike

jdc_septoct2016_intranetArticle: Living well with progressive non-fluent aphasia by Jane Twigg and Jenny La Fontaine, The Journal of Dementia Care, Vol. 24, No. 5, September/October 2016, p.16-18

Jane Twigg has a rare form of dementia but her battle to get a diagnosis was fraught with difficulties. Here, supported by Jenny La Fontaine, she offers some advice for professionals.

Note: if you’re interested in this article please use this form to request it.

ajdc_aprmay2015Article: Creative support for complex needs: living with bvFTD by Jenny La Fontaine, Anna Buckell and Jan Oyebode, Australian Journal of Dementia Care, Vol. 4, No. 2, April/May 2015,p.23-26

In the first of two articles on behavioural variant frontotemporal dementia, Jenny LaFontaine, Anna Buckell and Jan Oyebode explain the distinguishing features of this rare type of dementia and suggest a range of ways of offering individualised support.

Note: if you’re interested in this article please use this form to request it.

ajdc_junjul2015Article: Family experiences and needs: living with bvFTD by Jenny La Fontaine, Anna Buckell, Jan Oyebode and Jayne Ford, Australian Journal of Dementia Care, Vol. 4 No. 3 June/July 2015, p.24-27

In the second of two articles on behavioural variant frontotemporal dementia, the authors consider the families who live with the condition, and their support needs.

Note: if you’re interested in this article please use this form to request it.

ajdc_dec14jan15Article: Semantic dementia: a long, sad, lonely journey by Myra Lamont, Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.25-27

Myra Lamont shares the story of her husband Archie’s altered diagnosis – from Alzheimer’s disease to semantic dementia – and the lack of professional awareness and support they have encountered along the way.

Note: if you’re interested in this article please use this form to request it.

Website:rare-dementia-support
Frontotemporal Dementia Support by Rare Dementia Support

A UK-based site that offers information and support to
people with FTD, their family and friends and health care professionals.

 

 Earlier Dementia Resources FTD blog (2014)

You may also be interested in viewing our previous blog post on FTD (2014) which includes many more resources about FTD.