Memory Matters holds support group for rare form of dementia

Stock image | St. George News

ST. GEORGE — A rare form of dementia that affects a patient’s language and behavior rather than memory will be the subject of a support group in St. George Monday afternoon.

Bonnie Shephard, board member and recording secretary for the Association for Frontotemporal Degeneration, will facilitate a support group for caregivers of those suffering from frontotemporal dementia, photo date and location not specified | Photo courtesy of Memory Matters, St. George News

Memory Matters, a nonprofit organization working to improve wellness for individuals with dementia and their caregivers, is partnering with Bonnie Shephard, board member and recording secretary for the Association for Frontotemporal Degeneration.

This free support group, focusing on frontotemporal dementia, will meet at Memory Matters’ office located at 168 N. 100 East, Suite 104, from 2-3 p.m.

Frontotemporal dementia – also commonly known as fronto-temporal lobar degeneration, Picks disease or simply FTD – is distinct from other forms of dementia.

The patient’s memory is usually relatively preserved, but the disease leads to a progressive degradation in speech and behavior.

“Often, it happens in people younger than 65,” LuAnn Lundquist, Memory Matters founder and director, said of the disease.

Unlike more common forms of dementia, FTD has been diagnosed in people as young as 21, though onset is most common in people in their 50s or 60s.

In addition to genetic predisposition to the disease, other triggers for FTD include traumatic brain injury or stroke.

Patients with FTD will begin to exhibit marked differences in behavior and speech near the onset of the disease, symptoms that usually manifest later and are less pronounced in the progression of the disease in more common forms of dementia.

They lose their language, so when they talk, what comes out isn’t words,” Lundquist said. “They think it’s words when they’re forming it, but the tongue doesn’t bring out a word.”

Some patients eventually stop talking completely.

“We don’t see it a lot,” Lundquist said of the disease. “I would say only about five percent of the people we see have it.”

While there are currently no treatments to slow or stop the progression of the disease, FTD research has expanded in recent years.

Monday’s support group will be facilitated by Shephard, who left her career to support her husband when he was diagnosed with FTD. She has previously served on the state’s Alzheimer’s Task Force and has worked to create greater awareness for FTD.

“She has become a wonderful advocate,” Lundquist said.

Shepherd and Memory Matters plan to offer the support group on a quarterly basis for Southern Utah residents.

While the meeting is mainly intended as a supportive resource for caregivers of those suffering from FTD, Lundquist said those who have questions about the disease or suspect a family member may be showing signs of it may also attend.

We want it to be open,” Lundquist said of the support group.

For more information, contact Memory Matters  of Utah/Nevada at 435-319-0407 or email [email protected].

Event details

  • What: Frontotemporal dementia support group.
  • When: Monday, May 22, from 2-3 p.m.
  • Where: Memory Matters office at 168 N. 100 East, Suite 104, St. George.
  • Cost: Free.

Email: [email protected]

Twitter: @STGnews

Copyright St. George News, SaintGeorgeUtah.com LLC, 2017, all rights reserved.

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