Approximately one year ago, the world heard the word “aphasia” across every news outlet as acclaimed actor Bruce Willis was reported to be stepping away from his career following this diagnosis. What we didn’t know, at the time, was the etiology/cause of this frustrating language impairment for Mr. Willis. It was suspected, by many in the field, that mention of the disorder “impacting his cognitive abilities” over a period of time was suggestive of a neurodegenerative process vs. stroke/acute neurological incident.
This week, the Willis family shared that the medical diagnosis that resulted in aphasia is FTD, or Frontotemporal Dementia. FTD is an “umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain.” according to the Mayo Clinic. Because these regions of the brain are responsible for behavior, executive functioning and language, impairments in these areas can be devastating for an individual and the family. One of the specific subtypes of FTD is called Primary Progressive Aphasia, or PPA. PPA also has subtypes/variants, but what is important to know is that these speech and language impairments have a slow, insidious onset and will impact all of the language areas (reading, writing, listening and speaking) before cognitive involvement and decline is appreciated.
The Triangle Aphasia Project Unlimited has a special program for individuals and families dealing with PPA, called TAPLinks. The development of specialized services for this population takes into account that there is often a delay in securing a diagnosis, many questions/concerns as cognitive deficits emerge and support needs unique to the carepartners. TAPLinks offers a unique conversation group, a carepartner support group, trainings and education for providers. We work collaboratively with local (i.e. Dementia Alliance of NC, Duke Dementia Family Support Program, etc.) and national organizations (i.e. National Aphasia Association (NAA), Association for FrontoTemporal Degenerations (AFTD)). Our Director of Clinical Services, Maura Silverman, MS, CCC/SLP serves on PPA Advocacy and SLP/MD PPA Training Committees for the National Aphasia Association and most recently held a PPA Focus group to integrate needs into our overall program objectives.
We have included several helpful links for you to improve your understanding of this particular type of Aphasia and encourage your involvement in all of the organization’s objectives to best serve individuals with PPA, their families and the community.
AFTD’s Announcement of Bruce Willis’ FTD Diagnosis: https://www.theaftd.org/posts/all-us-states/family-of-bruce-willis-announces-actor-has-been-diagnosed-with-ftd/?fbclid=IwAR3w2oM3E8IaSx7KpgqkADZoth4AUBRDy2ztxXoKWaIA1HizePdxnR3RCNI
National Aphasia Association’s Ask the Expert series: Dr. Maya Henry on PPA: https://youtu.be/G4mmIA5lTHY
Frontotemporal Disorders: Information for Patients (NIH free publication): https://order.nia.nih.gov/publication/frontotemporal-disorders-information-for-patients
The professionals who have dedicated services for individuals with PPA/FTD and their families are humbled and encouraged by the supportive awareness that this announcement has had in regards to aphasia. While we share this appreciation for increased attention to the term and all it implies, we are sensitive to the true challenges that a PPA/FTD journey brings and wish the very best for Mr. Willis and his family. We thank them for their courage and transparency. Their statement released this past week means so much to TAP and the larger aphasia community: “Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately,” the family said. “We know in our hearts that – if he could today – he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families.” (AFTD)
For PPA help in NC, email maura@aphasiaproject.org.
