Frontotemporal dementia

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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

 


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: 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

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