Rick Fowler, 81, went out for a drive one night about a year ago and suddenly realized he had no idea where he was. Perhaps he had been there before; perhaps not. But he wasn’t sure, and that frightened him.

He wandered around a bit and eventually came upon a familiar landmark and was able to make his way home.

“It was enough to wake me up to the fact that I better get myself checked out and see what was going on,” he said.

The very next thing he and his wife Pat, 76, did was to book a medical appointment, and after Rick took a series of tests, they learned he was experiencing the early stages of dementia.

“I had no idea,” Pat said. “When we—and this is like pregnancy to me when people now say, ‘We are pregnant’ … I say we because it is us together.”

The term dementia is ubiquitous, but what is it, exactly?

“Dementia is just a cluster of symptoms where you have thinking and memory changes that are so severe that they interfere with your ability to take care of yourself in the day-to-day,” said Dr. Shellie-Anne Levy, a clinical neuropsychologist and assistant professor in UF’s department of clinical and health psychology.

Alzheimer’s disease is the most known type of dementia. Florida has 580,000 people over the age of 65 living with the disease, which is the second highest number of seniors in the United States, behind only California, according to the Alzheimer’s Association.

Overall, in 2023, the association reported 7 million people with Alzheimer’s in the United States, with one in three seniors dying of Alzheimer’s or another type of dementia.

In Alachua County, the association reports 41,100 residents over the age of 65, with 4,800 of them, or 11.6 percent, estimated to be living with Alzheimer’s.

“Dementia is a big umbrella term for all types of cognitive and brain disruptions as they unfold,” said Donna Lee, program manager for the Alzheimer’s Association Central and North Florida Chapter. “It’s like using cancer as an umbrella term, but as we know, there are different types of cancer.”

And typically, like cancer, the problem starts slowly.

“Someone may have mild cognitive impairment and can sometimes do a memory screening that could help identify the problem,” Lee said. “It is an entry point to start paying attention to what’s happening.”

That’s what Rick Fowler and his wife did to learn he has vascular dementia. They were two of 11 people attending a recent Elder Options Savvy Caregiving training session to help them both cope.

“I need to know—things like to stop using the word remember,” Pat said. “I knew there were things I was doing wrong, and I needed to find what I could do to better and not get so frustrated and depressed.”

Elder Options offers regular Savvy Caregiving Training sessions throughout the year, in person and via Zoom, as well as second-tier assistance programs for caregivers to help them help themselves.

“Our main role is to educate dementia caregivers,” said Amanda Sparkman, an Elder Options caregiver support coach. “There are two benefits to taking the class. People develop actual skills they can apply to their caregiving situation at home. It is also beneficial to meet other caregivers and feel less alone in their journey.”

Caring for someone with dementia can be challenging, and sometimes, caregivers need a break. Al’s Place, an Elder Care program funded with a grant from Elder Options, offers adult day care for Alachua County residents who have been diagnosed with dementia or Alzheimer’s disease.

“This is a respite program,” said nurse and program manager Jessica Burley. “Our program is to alleviate caregivers so they don’t have caregiver burnout.”

Breaks are critical for caregivers, who often face years-long battles alongside a suffering loved one.

“Many caregivers end up sicker than the person they are caring for,” she said. “Most of our clients come three days a week, although they can come five.”

Burley said they plan daily activities to keep their clients active and engaged.

“It brings them out of a shell they might have been in,” she said. “Most caregivers are spouses or sons and daughters with families and full-time jobs. So, the client may spend much time in front of the TV in a chair, not even moving around. We get them up, using their brain, getting them to do some little activities that use their fingers doing crafts. You want to make this the happiest part of their day.”

Experts say people of color are also more prone to getting dementia. Studies show that the rate of dementia and Alzheimer’s is twice as high for African Americans and one-and-a-half times as much for Hispanics when compared to aging white individuals. Experts are still trying to figure out why.

“One large factor deals with social determinants of health,” said Levy, the UF neuropsychologist. “Systemic social and economic forces in our culture increase stressors for these communities.”

Those factors cover a wide range of issues.

“We think of things like access to health care, neighborhood safety, walkability of neighborhoods, poverty, and access to quality education. We also think of things like access to quality jobs,” she said. “All these things impact our health in intangible ways.”

Awareness is important. That’s one reason the Alzheimer’s Association in Florida has its purple brain bus and brain van traveling the state.

“We use the bus to reach some of the communities that might not otherwise easily get the information they need,” said Heike Accorsi, bilingual program manager for the Alzheimer brain bus program. “Sometimes some of the more rural communities are more difficult to reach, and taking the brain bus or van to them helps bridge that gap.”

Regardless of race, ethnicity, geographic location, or social status, dementia is a drain not just on those suffering from the disease but on family members providing care.

The Alzheimer’s Association shows more than 840,000 Floridians provide more than 1.3 billion hours of unpaid care for persons living with dementia. Sixty-six percent of dementia caregivers report a chronic health condition, 29 percent suffer from depression, and 14 percent are in poor physical health.

“It’s the most expensive way to die,” said Glenn Smith, principal investigator for the 1Florida Alzheimer’s Disease Research Center, a consortium of institutions working to promote prevention and treatment of Alzheimer’s and related dementias. “It’s a huge medical burden, a huge economic burden, and a huge social burden.”

The typical length of time from diagnosis of dementia to death when the dementia is due to Alzheimer’s is about 12 years, Smith said.

“The person becomes increasingly dependent on others to maintain their health, safety, and well-being,” he said. “As thinking skills further decline, there is a need for paid professional support or relocation to assisted living or skilled nursing care. All of that is a social and economic burden on the family because of the need to pay for that kind of care.”

Christina Ramos, executive director of Touching Hearts at Home, a home health care agency based in Gainesville, learned that first-hand when her now-86-year-old grandmother, Rita Noa, was diagnosed with dementia 14 years ago.               

“Just experiencing the mental, physical, and emotional rollercoaster, not only empathizing with what she was going through and the changes she was cognizant of, but we also saw how it can be very taxing and demanding on a family,” Ramos said.

Ramos said she experienced how the relationship between the caregiver and the loved one changes.

“I used to look forward to seeing and talking with her daily,” she said. “It seems like I lost a best friend and my grandmother. But there are times when she’s back, and you can tell she remembers you. Those moments are fleeting, and you cherish them.”

Her grandmother’s illness prompted Ramos to change her career path. She and her mother, father, and brother started their home healthcare agency to “be there for other seniors and to help other families” with the kind of care they wanted for her grandmother.   

Sira Botes, occupational therapist and founder of the Botes Memory Method, a cognitive assessment tool, calls the current situation a “dementia pandemic” unfolding in society.

“Between 2025 and 2050, dementia is going to escalate,” she said. “We do not have enough caregivers trained or enough facilities to place people in. We need to do better.”

Editor’s note: This is the latest story in Mainstreet’s Aging Matters series. It was independently reported by Ronnie Lovler and underwritten by Elder Options.