Names of Note: Update on a Modesto resident striving to ‘live well with dementia’
Steven Barbieri of Modesto has joined other people with early-onset dementia to form a nationwide group devoted to the issue.
The National Council of Dementia Minds launched Thursday, July 15, via an online gathering. Barbieri is one of eight founders from various states and a member of the governing board.
Barbieri shared his story with The Modesto Bee in September 2020. A diagnosis in 2012 forced him to retire at 51 from an executive post at Wells Fargo Bank. He has trouble with memory and concentration but can still devote time to nonprofit work.
The new group “is the first known national nonprofit organization governed by persons living with dementia,” its website says. It adds that the leaders “shared a desire to live well with dementia.”
The term covers a range of neurocognitive disorders, including Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal degeneration.
Barbieri has chronic traumatic encephalopathy, or CTE, caused by repeated blows to the head. He attributes it mostly to 40-plus years as a martial arts competitor.
The new group hopes for dialogue with other people with dementia, as well as health care providers, researchers, policy makers and others. It also will confront misconceptions about the disorders.
“We have life examples that we can share,” Barbieri said in a phone interview Thursday.
The website has information about arranging dementia-related events, both live and virtual. It is at www.dementiaminds.org.
Barbieri remains active with the Alzheimer’s Association, which deals with this and other forms of dementia. He will take part in its annual fund-raising walk on Sept. 18 in Modesto. It will be a live event once again after a COVID-safe version last year.
Barbieri and his wife, Tracy, have a son and two daughters, all grown. She taught kindergarten in Manteca before retiring last year to help with his care.
Barbieri updated The Bee on his condition Thursday. He had said last year that he was at 3.5 on a 7-point scale, the upper end meaning a person can no longer perform basic tasks.
He now puts himself at 4. He said he has more memory lapses than before and gets confused whenever he tries “multitasking.”
Barbieri continues to aid his physical and mental health with twice-weekly visits to a boxing gym called Bad to the Bonz. Owner-coach Tony Avila puts him through demanding drills, careful not to strike his head.
Steven and Tracy Barbieri love to travel, part of their commitment to making the best of a tough diagnosis. They take lots of photos to assure that he remembers the places they’ve seen.
“I don’t want to die with dreams,” Steven said last year. “I want to die with memories.”
Names of Note recognizes people and organizations for their contribution to their communities. Submit items to jholland@modbee.com.
