TAMPA, Fla. -- They bonded over a shared love of small business and baseball games in their quiet Iowa town.
They moved south together, married in Central Park as soon as they could and spent countless nights in Clearwater with friends they met in a local women’s choir.
Twenty-six years later, their evenings look different. Ellen Guevel, 57, will remind her wife that the ice cream she eats each night is in the freezer after a day of making sure she’s taken her medications.
She’ll feel relief, then exhaustion, that Linda Guevel has made it through the week without breaking another bone.
“I’m really personally struggling with the whole transition from partner to caregiver,” said Guevel, who began caring for her 73-year-old partner after she was diagnosed with Alzheimer’s in 2016. “I miss the fun. Sometimes I feel like I’m doing a good job, sometimes not.”
More Floridians are becoming caregivers for loved ones with Alzheimer’s or other forms of dementia as the older adult population grows, according to a new report from the Alzheimer’s Association.
An estimated 720,000 seniors in the Sunshine State are expected to have the progressive memory disorder by 2025.
“The more cases of the disease you have, the more caregivers that are going to be involved,” said Stefanie Wardlow, a program manager at the Florida chapter of the Alzheimer’s Association.
The labor, which is often performed on top of working another full- or part-time job, takes a toll — one that’s disproportionately felt by women and people of color.
Roughly a third of unpaid caregivers have depression, the report found.
In Florida, about 830,000 people provide unpaid care to someone with Alzheimer’s disease or another form of dementia. The vast majority — two-thirds — of these caregivers are women like Guevel.
“Fortunately, I have a great support system,” said Guevel. “I would not make it without my tribe.”
As a person’s memory declines, they may need supervision and help with everyday tasks, like eating, dressing, paying bills and basic hygiene. But professional home care services can be costly — making round-the-clock care inaccessible to many people in the U.S.
Family members often fill in the gaps.
About 80% of the care provided to older adults nationwide comes from family or friends. Nearly half are providing help to someone with known or probable dementia.
The unseen labor that family caregivers provide — from helping with activities of daily living to ensuring loved ones don’t wander out of the home — is often called “invaluable.”
But the Alzheimer’s Association report, which was released last month, estimated that the care provided by family members or other uncompensated caregivers in Florida was worth about $23 billion last year.
A third of these caregivers are seniors themselves. They’re also likely to have at least one chronic condition of their own.
Black caregivers tend to provide more care — over 40 hours weekly — than their white peers. They’re also less likely to seek respite services.
Overall, Hispanic, Black and Asian American dementia caregivers all report having less outside or formal help and greater depression than white caregivers.
Ellen Guevel isn’t sure what she and her wife would do without the small group of friends they’ve developed over two decades in Tampa Bay.
One takes Linda to doctor’s appointments.
Another drives her to adult day care when Ellen can’t work from home.
A rotating cast comes by on Wednesday evenings to dine or play games with Linda while Ellen attends her weekly bowling league.
“That way, Linda has a social life, too,” Ellen Guevel said.
Support and respite is key for caregivers, who often feel isolated, Wardlow said.
“Caregivers need to be aware of their own health needs and to put themselves first,” she said. “It’s important they make sure that they’re eating, going to the doctor’s office and attending support groups, either in person or virtually.”
Local area agencies on aging can often help family caregivers get connected to resources in their community, from aid with home health care to caretaker support groups.
Wardlow said more support is needed.
The Florida chapter of the Alzheimer’s Association has called on lawmakers to support Gov. Ron DeSantis’ recommendation for a $10.5 million increase for community-based care services for older adults and Alzheimer’s initiatives in this year’s budget.
Many caregivers know what it’s like to be surrounded by a sea of well-meaning people who extend the offer, “Call if you need anything.”
But Guevel said that often the best help can be spontaneous.
“I wish people would just show up, with no particular agenda,” she said. “And just say, ‘Hey, we’re going to do a puzzle, or watch some TV, get a manicure-pedicure, whatever.’”
“I just need somebody to entertain for an hour — to answer that same question 25 times so I don’t have to,” she added. “Just show up.”
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The Alzheimer’s Association 24/7 Helpline is available for caregivers and people with dementia at 800-272-3900.
