Rare form of dementia affecting language and behavior the subject of free support group

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ST. GEORGE — A rare form of dementia affecting a patient’s behavior and language will be the subject of an upcoming support group in St. George.

The free meeting will be held at the St. George Library located at 88 W. 100 South Sept. 11 from 12:30-1:30 p.m.

Memory Matters, a nonprofit organization working to improve wellness for individuals with dementia and their caregivers, has partnered with the Association for Frontotemporal Degeneration to offer the support group.

Frontotemporal dementia – also commonly known as frontotemporal 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.

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 courtesy of Memory Matters, St. George News

The support group will be facilitated by Bonnie Shephard, who left her career to support her husband when he was diagnosed with FTD. She is currently board member and recording secretary for the Association for Frontotemporal Degeneration and previously served on the state’s Alzheimer’s Task Force.

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

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 meeting.

The support group is offered on a quarterly basis for Southern Utah residents.

For more information, contact Memory Matters  of Utah/Nevada at 435-319-0407 or email info@memorymattersutah.org.

Event details

  • What: Frontotemporal dementia support group.
  • When: Monday, Sept. 11, from 12:30-1:30 p.m.
  • Where: St. George Library located, 88 W. 100 South, St. George.
  • Cost: Free.

Email: jwitham@stgnews.com

Twitter: @STGnews

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