AFTD’s Partners in FTD Care is an on-going initiative to educate professionals about FTD and develop best practices in community care. Partners in FTD Care materials are developed by a committee of clinical nurse educators, social workers, and family and professional caregivers with contributions from specialists in speech-language pathology, occupational therapy, hospice. Partners in FTD Care has two elements:
- Introductory Educational Materials
- Quarterly e-newsletters featuring case studies in FTD
This is information that you can share with an MD as you are going through the diagnostic process if there is uncertainly on the part of the MD.
For more information go to http://www.theaftd.org/understandingftd/healthcare-professionals
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
Presented 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.
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.
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.
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.
This came up in a support group meeting last week, so I’m reposting information about Medic Alert bracelets that are used to identify an individual with dementia who wanders or if a caregiver has a medical emergency.
The initial reason I got a bracelet for my wife was not her wandering, but what if something happened to me while she was with me. We get into a car accident and I’m unconscious. She wouldn’t have been able to provide any information to emergency responders. So I signed both of us up and we both wear bracelets.
Her bracelet indicates she has a memory issue. Mine indicates I am her caregiver. Both have an 800 number to call and MedicAlert has our medical information and emergency contacts.
There is information on the Alzheimer’s web site and they can be ordered there, although I recommend calling. I ran into problems with the web site when I tried to add my bracelet to the order.
MEDICALERT® + ALZHEIMER’S ASSOCIATION SAFE RETURN®
“a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. They provide 24-hour assistance, no matter when or where the person is reported missing”. Go to AlzMedAlert.
The current goal of therapy in treatment of FTD is symptomatic relief. While the medicines identified here may be useful in some individuals, other individuals may worsen with a medication.
It’s worth checking with your MD to see what he or she thinks about these meds. I’ve found that meds work. I’ve heard many people say they don’t want to use meds, but my experience is that done in the proper way, they help a great deal.
Source: The Penn Frontotemporal Degeneration Center
Each MD will have strengths and weaknesses, and various levels of understanding about FTD. Your relationship with them is as important as their professional credentials, so trust your assessment of whether or not you are receiving the appropriate care.
Here is a list of medical doctors that you may encounter and suggestions for how to find the right one for your needs.
An article written by Sharon Hall, who is the caretaker of her husband, who has been diagnosed with Frontotemporal Degeneration, and her elderly mother. She calls them ‘The Twins.’
“The world stopped. The breath seemed to leave my body. My husband had not changed intentionally, his brain was degenerating in the very places that make him, him. Deep inside me I knew. I knew this was what happened. I had spent the last year and a half struggling through the worst part of my life. Thinking that the man who was so tender and loving had turned into a beast, and maybe it had something to do with me.”
Read the article
A chapter about the family’s perspective is in the medical text book Hodge’s Frontotemporal Dementia, 2nd edition.
When approached by AFTD Medical Advisory Council member, Brad Dickerson, M.D., AFTD’s Executive Director, Susan L-J Dickinson, agreed that it was time a medical text book focused a chapter on how FTD impacts the family unit.
A first for AFTD and the medical field, the text will bring crucial patient and family perspectives to physicians in training, improving diagnosis and care in the future.
Find out more here: http://bit.ly/29TyotY
What is Hodge’s Frontotemporal Dementia, 2nd edition?
“It provides an in-depth and expert synthesis of the status of our knowledge of FTD and related syndromes, the content includes chapters reviewing clinical, neuropsychiatric, neuropsychological, imaging, and other features of FTD and multidisciplinary approaches to patient management. Essential reading for specialist and generalist neurologists, psychiatrists, geriatricians, neuropsychologists, neuropathologists, and basic scientists in relevant fields.”
You Are Not Alone
Overview of Frontotemporal Degeneration (FTD)
Learn About the Disease
Create Your Care Team
Legal and Financial Issues
Develop a Positive Daily Routine
Address Safety Issues
Gaining in Skills and Confidence
Research: The Key to Tomorrow
Download the PDF