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.

 

Frontotemporal Dementia

Frontotemporal dementia (FTD) is the name given to dementia when it is due to progressive damage to the frontal and/or temporal lobes of the brain. It typically affects people at a younger age than Alzheimer’s disease, with symptoms beginning in the 50s or 60s, and sometimes younger. Almost a third of people with FTD have a family history of dementia.

The post today is a collection of resources about frontotemporal dementia. As always, we have offered a range of options, online, physical copies and downloads.

Book: Frontotemporal dementia syndromes, John R Hodges. 2007.

frontotemporal dementia syndromesIn the past decade there have been enormous advances in our understanding of frontotemporal dementia and related syndromes. The impetus for these advances has come from a number of directions including genetic discoveries, new approaches to neuroimaging and improved neuropsychological understanding of the cognitive aspects of the condition. Frontotemporal Dementia Syndromes provides a much needed review of the current status of our knowledge of these syndromes. The book starts with chapters reviewing the history of the condition and describes the presenting clinical, neuropsychiatric and neuropsychological features, before reviewing, in detail, the areas of greatest recent research progress. The book concludes with a chapter proposing a multidisciplinary approach to patient management. Frontotemporal Dementia Syndromes will be essential reading for neurologists, psychologists, psychiatrists and other clinicians interested in cognitive and behavioural disorders, as well as to basic scientists working in the area of neurodegeneration.

Children’s Resource: Frank and Tess – detectives! A children’s activity book about frontotemporal degeneration (FTD), Tiffany Chow  &  Gail Elliot. 2012.

frank and tess - detectives_webFrontotemporal Degeneration also FTD, is an illness that affects the brain. This activity book was created to children, ages 5-9, who are living with parent affected by FTD. Although every person and family experiences FTD in a unique way, this activity book introduces situations that may be familiar to those who are living with FTD. Our goal is to provide valuable, age appropriate information about FTD and offer some helpful coping skills for children. Many of the activities have been specifically designed for the child of a parent with FTD to do together. To reinforce lessons in the book we encourage both parents to engage in the activities.

This is a free, downloadable resource you can access here.

Article:Life Enhancing Activities for Family Caregivers of People With Frontotemporal Dementia, Dowling, Glenna A.; Merrilees, Jennifer; Mastick, Judy, Alzheimer Disease & Associated Disorders, April-June 2014

ADOD28(1)Jan-Mar14Aberrant psychological and behavioral symptoms are common in patients with dementia. These symptoms have negative consequences for family caregivers, causing stress and burden. Frontotemporal dementia (FTD) symptoms cause more pronounced stress and burden on caregivers than those associated with Alzheimer dementia. In this randomized, attention control pilot study, we delivered 5-weekly, one-on-one, positive affect intervention sessions to family caregivers of people with FTD. The program, Life Enhancing Activities for Family Caregivers: LEAF was conducted in-person or by videoconference with caregivers across the United States. Measures of affect, caregiver mood, stress, distress, and caregiver burden were assessed at baseline, end of sessions, and 1 month after completion. Twenty-four caregivers (12 intervention and 12 attention control) participated. At the end of the intervention, scores on positive affect, negative affect, burden, and stress all improved in the intervention compared with the control group. These scores continued to show improvement at the assessment done 1 month after intervention. Subjects were receptive to the skills and the delivery methods. The positive emotion skill-building intervention proved feasible especially in the internet videoconference delivery format. The intervention promoted positive affect and improved psychological outcomes for family caregivers of people with FTD.

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

Memoir: An evolution of love : life and love with Frontotemporal Dementia, Marie Sykes, Michelle Stafford. 2007.

AnEvolutionOfLoveBob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50.  He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.

This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.

It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.

Website: AFTD Kids and Teens

aftd kids and teens_webWhen a parent is diagnosed with frontotemporal degeneration kids may feel isolated, confused and scared. The AFTD Kids and Teens website has been launched to provide a source of information for kids and teens in affected families. The site includes answers and support for young families faced with raising their children to maturity as one parent regresses. The site has age-appropriate information about FTD and outlines the changes it can cause in family life. There is the opportunity for children to contribute poems, art, essays or videos about their own experiences with FTD.

YouTube: It Is What It Is – Frontotemporal Degeneration: Tragic Loss, Abiding Hope, The Association for Frontotemporal Degeneration. 2013.

An 18-minute documentary that chronicles the lives of four families affected by frontotemporal degeneration (FTD).

Teen resource: What about the kids? Frontotemporal degeneration : information for parents with young children and teens,  The Association for Frontotemporal Degeneration. c2012.

what about the kidsYou are probably reading this book after learning the devastating news that your spouse has frontotemporal degeneration (FTD). You are terribly worried about your partner and how you will lose the love of your life to this devastating, progressive disease. But naturally, you are very concerned about your kids. How will they handle their parent’s illness? Unlike many other dementias, FTD frequently occurs in middle age, meaning there are often children at home. When any parent faces a serious illness, their young children and teens need support and flexibility as well as lots of love and understanding. Few situations can be as stressful on a family as losing a parent to a degenerative brain disease.

FTD is a rare disease with challenging symptoms that can cause considerable impact on the family. As FTD progresses, it creates ever-changing obstacles and unique challenges for families to manage. Meanwhile, children grow and change. Their development heads in the opposite direction as their ill parent’s. What your kids can understand about the disease and what it will mean for their lives will evolve over the years. Children are very perceptive. They will be aware that a family member has changed or is ill. Maintaining an open dialogue with your children will help them cope and create a sense of well-being. Most importantly, taking care of yourself by practicing positive behaviors that decrease your anxiety will set a good example for the kids.

As difficult as it may be for you to admit, at some point you will need to prioritize your child’s wants and needs above your spouse’s. Sometimes, that means turning to an adult day program or a long-term care facility earlier than in other families without children. Do not measure your choices against others’. Trust yourself to make the right choices for your family.

This booklet’s goal is to assist families like yours to navigate successfully FTD’s diagnosis, challenges and changes. Furthermore, this booklet aims to reassure you, the well parent. Children and teens can become resilient and confident adults despite—and often as a result of—adversity. Your strength will help your children feel safe and will show them how people who love each other help one another in tough times. No one welcomes the changes that FTD brings. Yet, hidden within the loss is the potential for unexpected positive growth.

This book is available as a free download here.

Book: Pick’s Disease & Picks Complex, edited by Andrew Kertesz, David G. Munoz. 1998.

Pick's Disease and Complex_webPick’s disease, a form of dementia often accompanied by aphasia has been know for over a century.  The highly complex symptoms assocaited with frontal and temporal lobe deficits have made it difficult to diagnose.  This book presents the clinical and pathological manifestations of Pick’s disease.  It cover clinical depression, neuropathology, biology, and neurogenetic aspects of the disease.  It compares Pick’s and Alzheimer’s, the multiple atrophies and other neurodegenerative diseases.

YouTube: Planning for Hope: Living with Frontotemporal Disease, Produced by Cindy Dilks and Susan Lee Grant.  2010.

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. Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.

Note: this is an hour-long feature film.

Article: Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias, Dementia, May 2014

dementia journalAtypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer’s disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

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

Help Sheet: Frontotemporal Dementia, Alzheimer’s Australia

This Help Sheet describes a type of dementia known as frontotemporal dementia, which has different forms including behavioural-variant frontotemporal dementia, progressive non-fluent aphasia and semantic dementia.
It’s a free download and might be a good resource for friends and family as it’s succinct.