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.

 

Younger Onset Dementia

Younger Onset Dementia describes any form of dementia that has an onset of symptoms before age 65. It currently affects 24,000 Australians*.  Dementia can develop at any age, but a lack of awareness and understanding, even among health professionals, means that people with younger onset dementia are often misdiagnosed and face even longer delays in getting a diagnosis of dementia.

In our publication Younger Onset Dementia: A New Horizon? (2013) Alzheimer’s Australia make the observation that even with a diagnosis, there are few services designed to provide appropriate care and social support for younger people and their carers. Individuals with younger onset dementia face a unique set of challenges with changing financial circumstances, limited access to appropriate services, new social challenges and often too frequently fundamental changes to their relationships with family and friends**.

I think, dear readers, that one of the nicest things about the internet is that it gives us all the opportunity to share our experiences, thoughts and insights. Today we’ve pulled together resources on Younger Onset Dementia and hope that you find these as useful, thought-provoking and touching as we did.

YouTube short film: The Music in Hugh: A Look at Young Onset Dementia

In this completely gorgeous short documentary, son Max talks about the impact of younger onset dementia on his father, himself and his family.  Max shares his experience with touching candor and very importantly has found a way to reconnect with his father through music. Max’s thoughtful narrative on the importance of seeing his father as a person, not a patient or collection of symptoms is inspiring.

Fiction: Still Alice, L. Genova

Still AliceStill Alice is a fictional account of Alice Howland, a Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong. She finds herself in the rapidly downward spiral of Alzheimer’s Disease. She is fifty years old. Suddenly she has no classes to teach, no new research to conduct, no invited lectures to give. Ever again. Unable to work, read and, increasingly, take care of herself, Alice struggles to find meaning and purpose in her everyday life as her concept of self gradually slips away. But Alice is a remarkable woman, and her family, yoked by history and DNA and love, discover more about her and about each other, in their quest to keep the Alice they know for as long as possible. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Book cover Coping with Early-onset Dementia Guidebook: Coping with Early-onset Dementia, J. Eckersley

This is a helpful, no-nonsense guide Coping with Early-onset Dementia to confronting, accommodating and planning ahead for younger people with dementia. As well as acknowledging the special challenges facing people with younger onset dementia this guide also emphasises that there is still life to be lived, for both those with dementia and their carers. Topics covered include:

  • types of dementia, including Alzheimer’s disease
  • managing dementia on a day-to-day basis and dealing with common problems
  • obtaining support that is appropriate for younger people with the condition
  • treatments and new drugs in the pipeline
  • dealing with practical issues, such as work, driving and obtaining benefits
  • support for families, carers and children
  • care as the condition progresses – day centres, respite care and residential care
  • the relationship between dementia and genetics
  • complementary therapies
  • further resources

Memoir: Jan’s story : love lost to the long goodbye of Alzheimer’s, B Peterson

JansStoryJan Petersen was vibrant, active, healthy, and just 55 when she was diagnosed with Alzheimer’s. Barry was not even slightly prepared for what happened to her, and how it would impact his life when “forever” suddenly and terrifyingly has an expiration date. Jan’s Story is a very personal memoir on the impact of younger onset dementia.

DVD: Reflections: John & Yolanta : experiencing younger onset dementia

Reflections DVDJohn was an elite air force pilot who was diagnosed with Alzheimer’s disease at 52. In this DVD, John, his wife Yolanta and friend Dave chronicle the impact of John’s diagnosis upon their relationships and lives. Reflections: John & Yolanta: Experiencing Younger Onset Dementia is suitable for the families of people diagnosed with dementia at a younger age, and deals with many of the issues other families in a similar situation may face. The DVD is also relevant for health professions, as it highlights the complexity of life with younger onset dementia, and raises awareness about the particular issues affecting younger people.

Sign up: HOPE – Younger Onset Dementia newsletter, Alzheimer’s Australia

HOPE is Alzheimer’s Australia’s national newsletter for younger people with dementia, their care partners, family and friends, health professionals, care staff and everybody with an interest in younger onset dementia.  Take a look at our website page for HOPE where you can access previous editions and/or sign up for the newsletter by emailing hope.news@alzheimers.org.au.

Other information on Younger Onset Dementia

Younger onset dementia factsheets, Alzheimer’s Australia

Younger onset dementia tip sheets, Alzheimer’s Australia

Younger onset dementia forum, Alzheimer’s Australia

In our own words : younger onset dementia : a collection of very personal stories, Alzheimer’s Australia

The Long and Lonely Road: Insights into living with Younger Onset Dementia, Alzheimer’s Australia

Garry’s Dream, The Lovell Foundation  – The Lovell Foundation and Alzheimer’s Australia Vic have set an objective to promote the development of a quality long term accommodation facility for people diagnosed with Younger Onset Dementia.

Younger Onset Dementia and Me blog, AANSW blog – a place for young people with parents with younger onset dementia to connect with others, to get information and helpful suggestions and a place to be listened to.

When Dementia is in the House website, Dr T Chow and K Nichols  – Dementia resources for parents and teenagers

Younger people with dementia factsheet, Alzheimer’s Society UK

* Australian Institute of Health and Welfare (2012) Dementia in Australia.

** Alzheimer’s Australia (2013) Younger Onset Dementia: A New Horizon?