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The Gateway
In This Issue
What's New
Caregivers' Corner
Medical Momentum
The AFTD-Team
Words of enCOURAGEment

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Free FTD Caregiver Workshop in NC on Oct. 7th

Alzheimer's NC invites you to attend a free FTD Family Caregiver Workshop in Burlington NC on Sunday October 7 form 3-5 p.m. Mr. Bailey Liipfert, III CELA from Craige Brawley Liipfert & Walker LLP, will present Legal Planning for Families Living with FTD. Following the presentation there will be a social. To register, or if you have questions, please contact Nancy Broadwell, Alzheimer's North Carolina, phone: (800) 228- 8738 or [email protected]

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Issue: # 7
October 2012
What's New

AFTD Celebrates 10 Years:  There are just five days left to RSVP for AFTD's 10th Anniversary "Care and Cure" Event! The evening will include: cocktails, specialty food stations, silent auction and entertainment. Enjoy fine food from Susanna Foo, Plate Restaurant & Bar, Sansom Street Oyster House, Yellow Juice Bar and other restaurants. Guests will enjoy wine, beer, and a selection of signature drinks. Details and ticket purchase opportunities are available on AFTD's website.


AFTD Represented at NAPA Meeting: On July 23rd, AFTD Program Coordinator, Matt Sharp addressed the advisory council for the National Plan to Address Alzheimer's disease in Washington DC to introduce the council to AFTD and offer our expertise and assistance with The National Alzheimer's Project Act (NAPA). NAPA is a major federal initiative to help prepare the nation for the oncoming increase of Alzheimer's and related diseases such as FTD. The project involves 24 federal agencies working with public and private partners to achieve the goal of preventing Alzheimer's disease by 2025. Click here to see Matt's address to the council  (starts at 7:35 minutes). For more information on NAPA and the National Plan to Address Alzheimer's disease, click here

Caregivers' Corner 
Compulsive Behaviors: A True Test of Patience...and Creativity


Many people with FTD develop compulsive behaviors. These might be simple repetitive movements (e.g., clapping, rubbing, picking at skin), complex ritualistic actions (e.g., counting, checking, repetitive trips to the bathroom, walking fixed routes, hoarding) or stereotypical repetition of words or phrases (e.g., "you bet," "just so").


Managing compulsive behaviors can be particularly challenging. They test your patience and can be exhausting to monitor. In some cases, compulsive behaviors put the person's health and safety at risk.


Effective interventions require creative thinking. In one case, the person insisted on eating meals at a precise time, watched the same show from 9 a.m. until noon every day, and ate 10 candy bars every day despite having diabetes. When he developed a ritual that involved repeatedly walking up and down the middle of the street, a move to assisted living was needed to ensure his safety. In time he developed new behaviors: unrolling toilet paper in the bathroom causing toilets to become blocked, grabbing the remote to change channels rapidly and walking continuously.


What can you do?

  • Understand and accept the non-dangerous compulsive behaviors as part of the FTD. Monitor the person closely for non-safe actions and take appropriate action.
  • You will not be able to stop the behaviors. With creative steps you can reduce them or minimize the impact on others.
  • Don't argue with the person about his behavior. Instead modify the environment as appropriate. In the above example it helped to: remove candy and desserts from view, substitute desired behavior for unwanted actions (give 10 game tokens instead of candy); escort the person to the bathroom and give a few pieces of toilet paper. Remove paper and cloth towels from that bathroom; give the persona non-functioning remote control to substitute for the actual one.
  • Use movement rather than words. For someone who paces, walk beside them and slowly decrease your pace. He may also slow his pace and can be gently guided into a chair.
  • Some medications can be helpful to curb compulsive behaviors. The SSRI anti-depressants are commonly prescribed for this. Ask your doctor if this is indicated for your loved one.

And remember, ask for help from others, and use respite and support to manage feelings of frustration (and exhaustion) that are only natural when managing compulsive behaviors. 

Medical Momentum

8th International Conference on FTD Highlights Progress in Understanding the Disease


More than 600 scientists, clinicians, and allied health professionals from 35 countries met in Manchester, England from September 5-7, 2012 to focus on all aspects of FTD--from basic science to therapeutic approaches.  AFTD, a sponsor of the scientific conference, was involved in planning the parallel caregivers' conference, and also organized an ancillary meeting of caregiver organizations from around the world.

Dr. Mendez at Intl Conf 2012
Dr. Mario Mendez speaking to caregivers at the 8th International FTD Conference

A lot of the focus at the scientific conference was on the newly identified C9orf72 mutation, which investigators discovered only last year and now know is responsible for the majority of genetic cases of both FTD and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). Other sessions focused on advances in understanding of the underlying disease process, advancing use of imaging for accurate diagnosis and tracking progression of disease, and management of the disease.  More than 350 scientific posters were on display during breaks in the oral presentations, providing the poster authors with an opportunity to discuss their findings with other participants.

Nearly 100 caregivers attended a full-day program focused on their needs for information. This provided the opportunity for some of the leading researchers to present their work directly to family members. An additional meeting convened representatives from caregiver organizations in 11 different countries. Discussion here focused on potential development of an international patient registry as well as other ways these groups can work together to pool resources and share products and information.

At the end of the meeting a biotech company based in Singapore, TauRx, issued a press release announcing that they have garnered approval from both the FDA and the European EMA to conduct a phase 3 clinical study of their compound LMTX in behavioral variant FTD patients.  As of today, no clinical sites in the US have approved participation in the study; AFTD expert advisors tell us that it may be about 6 months before any US sites are ready to enroll patients.  AFTD will stay apprised as the trial makes its way through the approval process at US sites. Caregivers and patients can see a description of the trial (and in the future a list of participating clinical sites) at -- search on "TRx0237."

The AFTD-Team

Three young people in the AFTD community have been busy raising awareness of FTD as well as funds for research.  Eva, Justin and Olivia have all stepped up to Fight This Disease.AFTD Team logo


Click here to read their stories of ambition, education and courage.  Prepare to be inspired! 


If you'd like to support their efforts, feel free to make a donation to AFTD's Back-to-School Campaign!

More information on grassroots fundraising can be found on our website...simply click here.

Words of enCOURAGEment

From Jessica Dutton

2nd year PhD Student

Faculty Medicine (Dalla Lana School of Public Health)


My Father Loves Birds

Our backyard was always filled with bird feeders teeming with birdseed, and our basement bookshelves were always filled with books like "Birds of North America" and "The Canadian Birdwatchers Guide." When I asked my father why he knew so much about birds, he would simply say that his mother loved birds.bird on limb  Birds run in the family, it seems. So we always set aside our stale bread and old cereal to be fed to the birds in the back yard each week.

We knew there was something wrong when my father, at the age of 55, began to add leftovers and meat scraps to the stale bread and cereal, cooking it all into a huge, unnatural bird feast. When we asked what he was thinking, he explained that the birds ate pests like mosquitos and grubs in the summer, so we should be providing them with protein and fat throughout the winter to ensure they would be back to eat the pests again in the summer. Pretty soon, he was purchasing discount ground beef, frozen mixed vegetables and loaves of bread in order to prepare elaborate bird buffets every week. He would excitedly explain his bird-feeding strategy to confused dinner guests and annoyed family members, never heeding a word of argument. I was having horrible visions of gigantic mutant birds terrorizing the neighbourhood, high on hormones from the discount ground beef.


Not long afterwards my father was diagnosed with frontotemporal dementia or FTD.



Click here to read the rest of Jessica's story



If you have Words of enCOURAGEment that you would like to share in upcoming issues of The Gateway, please email them to [email protected] with "words of encouragement" in the subject line.


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