Frontotemporal Dementia: Help is Available

October 13, 2023
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Bre'anna Wilson
February 17, 2023
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In light of the statement shared by Bruce Willis' family, a lot of people are searching to learn more about frontotemporal dementia or are looking for help for their own situations.

Has your family been impacted by frontotemporal dementia (FTD) or is your loved one is suspected of having FTD? Well, I want you to know that help is available. In this blog, I will highlight resources available through the AFTD (theaftd.org)


The AFTD HelpLine

According to the AFTD, there most important resource is its HelpLine.

Phone Number: 866-507-7222

Email: info@theaftd.org


"The AFTD HelpLine is available for anyone looking for information, resources, and support related to FTD. Trained members of AFTD’s staff are available to answer calls and emails with available research and the most current resources. HelpLine staff ensure that each inquiry receives an individualized, supportive, and timely response." – theaftd.org


Checklists for Families and Physicians

To help identify red flags for the two most common types of FTD - behavioral variant FTD (bvFTD) and primary progressive aphasia (PPA). These checklists can help aid physicians during the screening process.

Download the checklists: https://www.theaftd.org/what-is-ftd/ftd-diagnostic-checklist/


What is FTD?

FTD also known as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick's disease, represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain.  

Learn more about FTD: https://www.theaftd.org/what-is-ftd/disease-overview/


Have you or your partner been newly diagnosed?

Here is a checklist of things to do or consider after an FTD diagnosis. This checklist does mention, "participate in research." Please remember, you DO NOT have to participate in any research unless YOU as the person living with FTD wants to.

Download the checklisthttps://www.theaftd.org/wp-content/uploads/2022/12/Newly-Diagnosed-Checklist.pdf

Find a local FTD support group

It is important that you know you do not have to go through this journey alone. Support groups are available to you.

For care partners: https://www.theaftd.org/get-involved/in-your-region/

For people living with FTD: https://www.theaftd.org/living-with-ftd/support-for-people-with-ftd/

For kids and teens: https://www.theaftd.org/living-with-ftd/kids-and-teens/


Managing FTD: Care and Symptom Considerations

FTD can present with unique symptoms and care challenges. If you are interested in learning about managing:

  • Symptoms
  • Resistance  
  • Aggression
  • Compulsive behavior
  • Sexual behavior
  • Apathy
  • Anosognosia
  • Activity engagement
  • Driving decisions

Please visit: https://www.theaftd.org/living-with-ftd/managing-ftd/


Legal and Financial Planning

It's important to address legal and financial considerations early on and collaborate with the person living with FTD.

Please visit: https://www.theaftd.org/living-with-ftd/legal-financial-planning/

or download the PDF: https://www.theaftd.org/wp-content/uploads/2018/03/Legal-and-Financial-Planning.pdf


Compiled AFTD Resources

This website link includes information about the AFTD's Comstock Grant program, Awareness Cards, sample letters to healthcare professions and other professionals that may benefit from knowing the symptoms of FTD and how they can help, the AFTD's publications, recommended webinars, books, dvds, and blog/stories, international and state resources, as well as FAQs.

Please visit: https://www.theaftd.org/living-with-ftd/resources/

If you ever have any questions, you can always reach out to us, Bambu Care. We are here to help! 

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