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.

 

Richard Taylor – Collected works

Richard Taylor, a psychologist and person with younger onset dementia was a persuasive and passionate advocate for living well with dementia. Richard generously shared his personal experience of dementia in a range of ways – books, articles, presentations and DVDs. On July 25, 2015 Richard passed away.

Richard was a founding member of Dementia Alliance International. Another founding member of Dementia Alliance International, friend of Richard Taylor and Australian dementia advocate, Kate Swaffer, has written a beautiful and moving tribute to Richard.

Our post today focuses on Richard’s body of work – one that does not shy away from how our community can and must be more dementia-friendly and view people with dementia as just that—whole and real people.

alzheimers_from_the_inside_out_webBook: Alzheimer’s from the inside out by Richard Taylor, 2007

Thoughtful and self-reflective, this collection of illuminating essays offers a rare glimpse into the world of individuals living with Alzheimer’s disease. Diagnosed at age 58, psychologist Richard Taylor shares a provocative and courageous account of his slow transformation and deterioration, and of the growing divide between his reality and the reality of others.

With poignant clarity, candor; and humor, Taylor addresses the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate, changing relationships with loved ones and friends, continuous declines in ability to perform familiar tasks, and never-ending uncertainty about the future.

Article: Waiting for Godot, while living with a diagnosis of dementia, probably of the Alzheimer’s type, Richard P. Taylor, Activities Directors’ Quarterly, Vol. 9, no. 1 Winter 2008 p. 14-16

“Yesterday someone asked me if I could/would write my own care plan. A plan of care that I believe would meet my needs today! Of course I first googled “plan of care Alzheimer’s” to discover the elements common to plan of care for someone in the early stages of the disease…”

Note: should you be interested in this article please request it through our handy form.

live outside the stigma DVD_webDVD: Live outside the stigma by Richard Taylor, 2011

These are the thoughts I so wish I had access to just after I was diagnosed. It took lots of living to work out and work through these conclusions concerning the myths and stigmas that automatically come with the words “Richard you have Dementia, probably of this or that type.”  These are the words I wish someone far wiser and more experienced than I had spoken to me shortly after I was diagnosed. — Richard Taylor

Article: Measuring “the rubs” of my quality of life, Richard Taylor, Alzheimer’s Care Today, Vol.8, Issue 4, October-December 2007 p. 292-293

“How happy am I? What is the quality of my life? High or low, good or bad, poor or rich? Am I, Can I ever be really happy?…”

Note: should you be interested in this article please request it through our handy form.

be_with_me_today_webDVD: “Be with me today.” A challenge to the Alzheimer’s outsider by Richard Taylor, 2009

Richard Taylor was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer’s outsider. This is the first DVD in a series of Richard’s “TODAYs.” Join Richard as he speaks from his heart, urging all of us to recognize that “THERE IS A PERSON IN THERE.” It is a remarkable documentation of his presentation to aging services professionals, urging them to embrace the culture change philosophy of person-centered care. For anyone who knows, interacts with, works with, or provides services to people with dementia.

Article: Who actually cares about respite care? People who attend it the most – and are consulted the least, Richard Taylor, Activities Directors’ Quarterly, Vol. 8, no. 3 Summer 2007 p. 27-28

“Three cheers for each and every person who works hard in his or her country, state, and community for funding of respite care! It provides a necessary and useful pause for caregivers.

Now, what about the person who uses the service? What about the quality of the service?…”

Note: should you be interested in this article please request it through our handy form.

100answers20questions6pers_webDVD: 20 questions 100 answers 6 perspectives hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD, 2012.

The topics include:

•Maintaining a respect for the personhood of each person
•Ways to help persons with dementia to continue to live purposefully
•Recognizing differences in forms of dementia
•Medications and behavioral concerns
•End-of-life care
Everyone will be informed, encouraged, and challenged by these well-rounded insights.

Hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD.

Here is a list of questions:

1.What is dementia?
2.Are all dementia the same?
3.What is Alzheimer’s disease then?
4.How do care partners approach a person with dementia in relation to types of dementia?
5.We have heard these words; caregiver and care partner. What do they mean?
6.How should a doctor tell you about a diagnosis, especially a terminal diagnosis of Alzheimer’s disease and other related dementia?
7.What is the best way for a physician to present a diagnosis?
8.How would you like the diagnosis relayed to you as a patient or as family member?
9.What role should you take in planning treatment?
10.What criteria would families/professionals use to decide which drug to use?
11.Is there a need for someone with dementia to enroll in clinical trial?
12.Why do people resist accepting a diagnosis?
13.What is the importance for accepting dementia diagnosis?
14.Common phrase, “Alzheimer’s is the long goodbye.” “People with Alzheimer’s disease are fading away.” Is this a stigma? Are people with dementia really fading away?
15.How can someone living with dementia have a sense of purpose?
16.When dementia strikes in the family, what are some of the topics to discuss about dementia diagnosis at the family dinner table?
17.What about hope?
18.How can care partners understand what its like to live with the symptoms of dementia?
19.what are best practices for care partners, professionals and people with dementia?
20.In the life of a person with dementia today what is the role of reminiscing?
21.How can care partners minimize stress?
22.In reality, when should a person with dementia move to assisted living community?
23.It is a human moral responsibility to look out for your neighbor; to have each other’s back. In this context, how should society, governments and families understand and respond to dementia?
We believe that this video is both informative and helpful to you in answering some of the questions you might have. Remember, the answers from each individual in this video are personal opinions.  The video is designed to give you information from various points of view so you can make informed decision as per your situation. Keep in mind that if you have met one person with dementia, you have only met one person with dementia.

living w dementia R Taylor DVD_webDVD: Living with dementia: To change your mind about people whose minds have changed by Richard Taylor & G. Allen Power, 2011

In the first of three parts, Dr. Power makes the case for a paradigm shift needed in the established model of institutional long-term care. Viewers see documented evidence of the negative outcomes that result from traditional care, including the dangerous practice of “medicating away” the predictably negative reactions that emerge in response to standard care practices and attitudes. In describing a new vision of care, Dr. Power describes how to

 

  • Redefine the disease to better understand those experiencing it
  • Stop making people with dementia look and act like we do
  • Recast “problem behaviors” as mechanisms for coping and communicating
  • Find new ways to make normal life experiences accessible to people with dementia
  • Create more opportunities for people to feel connected and find meaning day to day
  • Decrease suffering and increase satisfaction using a new “experiential” model of dementia care

In part two, Dr. Taylor, a former psychologist and educator, articulates the needs, fears, and all-too-common negative experiences of a person diagnosed with dementia. He speaks from the heart on behalf of all those who are unable to communicate for themselves and, at the same time, speaks as one unique individual asking to be respected, supported and, most of all, seen and heard. With surprising candor and wit, he presents moving personal stories and sage advice that provide new insight about the experience of the disease to formal and informal caregivers as well as LTC managers and administrators.

Together, in part three, these two inspiring speakers respond to common questions and concerns, including

  • How to communicate a person’s preferences to care staff
  • Whether asking for opinions and responses from people with dementia is confusing for them
  • Ways to have better long-distance interchanges with a loved one by phone
  • Whether better care practices can be taught or are essentially innate
  • And much more

This valuable training tool helps to raise the awareness of anyone working in long-term care settings to the remaining potential for people with dementia to lead satisfying and fulfilling lives — with appropriate supports — despite their losses.

* G Allen Power is the author of      “Dementia beyond drugs : changing the culture of care” and he discusses parts of his book as well as referring to Tom Kitwood and the Eden principle