Did you know? The AFTD has a YouTube Channel

On that channel is the second installment of the AFTD’s Educational Webinar Series which brings in experts to address issues important to all whose lives are impacted by FTD.

AFTD Education Webinar, January 12, 2017: A Care Paradigm for Persons with FTD

vidPresented by Dr. Alvin Holm, this AFTD educational webinar explores how FTD treatment benefits from an integrated and comprehensive approach. Learn how symptom-specific therapies, wellness management and environmental support can help caregivers manage FTD care more effectively.

Alvin Holm, M.D., FACP, is Founder and Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota. He has more than 25 years of experience in adult medicine and neuropsychiatry.

There are about 25 other videos on that channel as well, events, personal messages, a PSA and more. AFTD YouTube Channel.

Save the Date: 20th Annual Dementia Education Conference – April 6, 2017

Registration opens up in mid-February. Caregivers are welcome to attend. There is a fee. Last year it was $60. I’ve attended it more than once and have found it to be very informative.

Great speakers and a variety of vendors displaying their products and services. There has been a session on FTD the times I’ve attended.alz-conf

For professionals who attend, they can get continuing education credits.

It is held at the Radisson Hotel in Cromwell. Sponsored by the Alzheimer’s Association, CT Chapter. More info.

 

AFTD Awards $2 Million to Advance Biomarkers Research

An excerpt from the press release. Full release.

“Doctors often rely on biomarkers – objective, easily measured biological features that indicate underlying pathology— to support accurate diagnosis and treatment efforts. Blood pressure, for example, is a widely-used biomarker for cardiovascular disease. Today, no comparable measures exist for FTD.

After reviewing proposals from 23 leading researchers worldwide, an expert panel has selected five researchers for multi-year FTD Biomarker awards:

  • Randall Bateman, MD, Washington University, St. Louis.
  • Christian Haas, PhD, Ludwig Maximilian University & the German Centre for Neurodegenerative Diseases, Munich.
  • Leonard Petrucelli, PhD, Mayo Clinic, Jacksonville.
  • Jonathan Rohrer, MRCP, PhD, University College London, UK.
  • Judith Steen, PhD, Boston Children’s Hospital.

Biomarkers will help doctors to diagnose FTD, track its progression, and evaluate potential treatments. These efforts could also benefit research targeting diseases like Alzheimer’s, Parkinson’s and ALS.”

Visit the AFTD site for more details about the FTD Biomarkers Initiative.

AFTD’s “With Love Campaign” to Fight FTD

From the AFTD web site:

“Inspired by the day dedicated to love–Valentine’s Day–AFTD’s With Love campaign is an opportunity for you to honor or remember a loved one impacted by FTD. During the month of February,
with-loveyou can share your story of love, spread FTD awareness and raise funds to support AFTD’s mission simply by creating a fundraiser. Over the past five years, this campaign has raised more than $247,000 to fight this disease. Will you choose to fight FTD, With Love?” More info.  To Donate.

 

Emergency Planning for FTD Caregivers

Along with the day-to-day caring responsibilities. finding the time to plan and be prepared to deal with a severe snow or ice storm, hurricane, tornado, flooding, power outage, fire, etc. is important.

This came to mind as I’m watching the weather report about us getting hit with a Nor-easter this evening.

I also think about it because I’m a member of Westport’s Community Emergency Response Team, community volunteers supporting emergency services, and in the past we have helped run shelters for residents who had to leave their homes.

r-uHere is a link to Are You Ready, prepared by the Westport Weston Health District. While some of it is specific to those towns, contact numbers for example, most is general preparedness information pertinent to anyone and it is nicely laid out and easily readable.

Another place for info is this link to an article on the National Caregivers Library site about things to consider.

Also a link to www.ready.gov, a Homeland Security web site.

 

AFTD – Informal FTD Caregiver Connections

Would you like to connect with another FTD caregiver? No support group in your area?

The AFTD has a program where they can match FTD caregivers who are in a similar situation.

After agreement by both parties, they share a name and a contact number or email, but no other personal information.  You take it from there.

To request a match or to register, contact the AFTD at info@theaftd.org or toll-free 866-507-7222 for details.

“Using the iPad with a Person Living with Dementia”

I’ll be presenting and demonstrating the approach I developed to use the iPad with my ipad-diane-arden-aug2015-03wife at the CT PC User’s Group of CT meeting in Trumbull on January 26.

Details at http://tpcug-ct.org/

Description:

Keeping a person with dementia engaged in activities can be very challenging. Ed Fitzgerald, a technology consultant whose wife is living with Frontotemporal Degeneration, looked for ways to use technology to help her.

After some trial and error, he developed an approach to using the iPad, by creating a home screen of activities they do when they are together, combining apps, links, games, videos, pictures and more.

During this seminar, Ed will talk about how he got started on this project, demonstrate how they use the iPad, the process by which he created a customized set of activities and offer advice on how to proceed if someone is interested in pursuing it with their loved one.

He has also explored the use of augmented reality, virtual reality and a combination of real play and virtual play.

A glossary of FTD and Alzheimer’s related neurological terms

ftd-talkWouldn’t it be nice to have a place to go to get a brief description of terms like Aphasia, Acetylcholinesterase inhibitors, Dysphagia, Executive function, Lumbar puncture, Neuroleptic drugs, Tau, and many more terms we hear about.

Well there is.

FTDtalk, run by a group of scientists investigating FTD at the University College London Institute of Neurology in the UK, put together a glossary. Thank you scientists!

Go to www.ftdtalk.org/glossary/

6th Annual CT FTD Foundation Wine Tasting Fund Raiser

wine-2017The CT FTD Foundation will be hosting their annual wine tasting on March 11, 2017 at the DoubleTree Hilton in Bristol.  I went last year, it was wonderful! Great venue, good food, entertainment, raffle items and a very worthy cause.

You can go to their web site to buy tickets which are $35 when bought in advance. Please contact them with any questions, or if you have anything you would like to contribute to the raffle. info@ctftdfoundation.org.

FTD Caregiver Support Group Meeting

Date: Sunday, January 15th, 1:00-2:30pm
Location: Arden Courts Memory Care, 45 South Rd, Farmington, CT., a little over an hour from the Westport/Norwalk area.

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Arden Courts will provide respite care in a separate room if you bring the person with FTD with you. Just let them know in advance. RSVP: info@ctftdfoundation.org to confirm.

Meetings are the third Sunday of every month at Arden Courts Memory Care, 45 South Rd, Farmington, CT. Time: 1:00pm – 2:30pm. Hosted by the CT FTD Foundation, meetings are free. For more information contact info@ctftdfoundation.org