Early indications that Sue Peronto was suffering from dementia were subtle, but in hindsight they seem to be red flags that the family wasn’t sure how to interpret.
She was only diagnosed in July 2013, three years after she stopped working with her husband John at his Lakeland tax business.
She had worked in banking for 40 years before retiring in the mid-1990s.
Prior to 2013, John Peronto had noticed that she wasn’t making phone calls with clients and was struggling to learn new skills.
When he bought them an iPad, he recalls, “She couldn’t remember anything, not even turning a page.”
His intense interest in learning all about Alzheimer’s disease led him to participate in several programs, with and without Sue, sponsored by the Florida Gulf Coast Chapter of the Alzheimer’s Association.
These programs are ramping up again in Polk County after the impact of COVID-19 forced them online. Four self-help groups are now meeting here in person, and further events are planned.
“I felt like I always had to be an advocate,” he said. “I learned a lot and kept asking questions.”
Peronto was intrigued when he heard about the PACT (Preventing Alzheimer’s with Cognitive Training) study being conducted by the University of South Florida.
He was one of the first participants in a proof of concept for PACT in 2018. PACT aims to investigate whether computer-based training exercises reduce the risk of Alzheimer’s.
“It’s just a good program,” said Peronto.
“If they can find a cure or something to slow down or stop (dementia) so many people could have much better lives.”
“It’s a wonderful, wonderful study,” said Jody Streussnig, Alzheimer’s Association program manager for Polk. “These studies advance the ability to develop effective treatments.
Peronto said he doesn’t think drug therapy will be the answer, although many drug companies continue to search for a cure.
Sue Peronto had been prescribed two drugs, Aricept (donepezil) and Namenda (memantine), prescription drugs used to treat symptoms of dementia. Neither is a cure. They address external symptoms and allow some people to sustain their daily activities longer.
“There’s so much we don’t know,” said Dr. Aryn Harrison Bush, vice president of science and translation and director of brain health and cognition at Reliance Medical Centers in Polk County.
Reliance is collaborating with USF in the PACT study.
“These are complicated terms,” said Bush, who is also a research professor at USF. “We don’t understand their complexity.”
Part of the problem can be that diagnoses are made too late.
“People don’t know anything about Alzheimer’s disease,” said Peronto, who is 74. “I’m not worried about getting them, but you’re worried about losing some brain power.”
He became his wife’s primary caregiver as her condition worsened. They had been married for 44 years when she died in January aged 76.
About three-quarters of dementia cases are missed by primary care physicians, Bush said. By the time the disease is confirmed or recognized, treatment (with or without drugs) may be less effective.
Bush’s focus is increasingly on prevention and early detection.
Reliance offers free brain health assessments to anyone on Medicare, although patients receiving primary care there are members of certain Medicare Advantage plans.
If you are interested in this review, call 888-414-1413. This is not the same as the number for PACT, which is 863-800-0835 for Polk.
A landmark 2017 Lancet Commission report on dementia prevention and intervention identified nine risk factors that can be modified to reduce the risk of dementia.
They are high blood pressure, hearing loss, smoking, obesity, depression, physical inactivity, diabetes, infrequent social contact and a low level of education.
2020 added three more – excessive drinking, head injuries and air pollution.
“Forty percent of dementia cases could be prevented or delayed by targeting these 12 modifiable risk factors,” the commission said.
The Lancet is a long-established medical journal.
Much of the Alzheimer’s Association’s focus is to help ‘care partners’ of people with dementia learn as much as possible about how to manage it. It also has programs for people in different stages of dementia.
Its website is www.alz.org and the 24-hour helpline is 800-272-3900.
Activities of the Alzheimer’s Association:
• The Brain Bus will be demonstrated on August 6 from 9:00 am to 12:00 pm in Haines City at the Back to School Bash, Oakland High School, 915 Ave. E. be. This bus, a nationwide outreach initiative, discusses the benefits of early detection, brain health, and risk reduction.
• His free public program, Healthy Living for Your Brain and Body, will be held August 19 from 11:00 am to 1:00 pm at Encompass Health Rehabilitation Hospital, 1201 Oakbridge Parkway, Lakeland.
Polk support groups have resumed in-person meetings. They are:
• 10:00 am on the fourth Wednesday of the month at the Presbyterian Homes, 810 Lakeside Ave., Lakeland.
• Every third Tuesday at 1:30 pm at Solid Rock Church, 3601 Cypress Gardens Road, Winter Haven.
• 9:30 am on the fourth Thursday of the month at Solivita, 395 Village Drive, Poinciana.
• Every second Tuesday at 12:30pm with lunch at the Hawthorne Inn, 6150 Lakeland Highlands Road, Lakeland.
People are asked to register through the association, 800-272-3900, particularly if they wish to have lunch, although registration is not mandatory.
• Art Connects Alz, for people with mild to moderate dementia and their care partners, offers tours at the Polk Museum of Art in Lakeland. The next one will be on August 18th at 2pm. Registration is recommended.