St. George support group focuses on rare disease that causes loss of speech

Stock image | Photo by Bowdenimages/iStock/Getty Images Plus, St. George News

ST. GEORGE — A rare form of dementia that causes patients to lose their ability to speak will be the topic of an upcoming support group in St. George.

The free support group for caregivers of those suffering from frontotemporal dementia is being offered by Southern Utah-based nonprofit Memory Matters to members of the public and will be held Sept. 10 at the St. George Library, 88 W. 100 South, from 12:30-1:30 p.m.

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

FTD commonly affects people under 60 – with some patients as young as 21. The disease affects behavior, language and motor functions. Unlike more common forms of dementia, memory is not affected in most cases. Patients experience progressive degradation of their ability to speak.

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

“We don’t see it a lot,” Lundquist said. “I would say only about 5 percent of the people we see have it.”

Memory Matters is partnering with the Association for Frontotemporal Degeneration for the support group, which will be facilitated by association board member Bonnie Shepherd, who left her career to support her husband when he was diagnosed with FTD.

Bonnie Shepherd, board member and recording secretary for the Association for Frontotemporal Degeneration, will facilitate a support group for caregivers of those suffering from frontotemporal dementia in St. George | Photo courtesy of Memory Matters, St. George News

“We will talk about possible strategies and examples of how we might handle certain situations, and then we have an open discussion on multiple topics from the members,” Shepherd said of the support group.

FTD can be especially challenging to deal with for patients and caregivers affected by the disease, due to younger onset, poorly recognized symptoms and no current medical treatment beyond managing symptoms of behavior, agitation and anxiety.

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

Shepherd emphasized that the value of the support group lies in allowing caregivers to know they are not alone in dealing with the challenges they face, which can include financial issues, medical issues, respite care, placement and finding resources in the community.

The meeting is intended as a supportive resource for caregivers, but those who have questions about the disease or suspect a family member may be showing signs of it may also attend.

“FTD is a disease and not something to hide or deny,” Shepherd said. “Take advantage of solutions that can help with the journey for the caregiver and patients and to provide support for both.”

The support group is offered on a quarterly basis for people in Southern Utah and surrounding communities, including southern Nevada.

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, Sept. 10, from 12:30-1:30 p.m.
  • Where: St. George Library, 88 W. 100 South, St. George.
  • Cost: Free.

Email: [email protected]

Twitter: @STGnews

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