The number of Floridians serving as caregivers for people with Alzheimer's and other dementias is an estimated 840,000, an increase of 13,000 in just one year, according to an annual report from the Alzheimer's Association.
Caregiving takes a toll on families hit by the degenerative brain disease, but a new program from the Centers for Medicare & Medicaid Services could lessen that burden.
A caregiver's story
For the past three years, Bruni Mercado has taken care of her mother, who at 92 is in an advanced stage of Alzheimer's disease.
The round-the-clock care at her mother's home in Ocoee has kept Mercado from her husband, who she said is caring for his mom, who also has dementia.
Mercado first experienced the emotional toll of being a caregiver for someone with dementia when she helped her sister with their father. He died in 2021.
"[I]t hit me so hard with my dad when I was right there," she said, looking across the living room, "and he looked at me and he said, 'You are family, right?' "
At that moment, Mercado said, she was already grieving, knowing she had lost her dad. But that experience made it easier to deal with her mom’s decline.
She is among the estimated 840,000 dementia caregivers in Florida, based on the 2024 Alzheimer's Disease Fact and Figures, an Alzheimer's Association report that compiles the most recent statistics and research.
That research shows that the burden of caregiving falls more heavily on Black and Hispanic families. A much higher percentage of those dementia patients are living with their adult children.
Mercado, whose family is Puerto Rican, sees it as a cultural thing.
"But we feel that we should take care of our parents," she added. "And we in general, I'm speaking as a Latina woman, we're very nurturing. So we try to do it ourselves. And I know there's cases that they cannot."
Earlier on, Mercado said, she was doing it alone and she prayed often for "a double portion of grace ... because, you know, my mom was very feisty and difficult."
After that, Mercado could face the situation. Still, sometimes it was hard to get out of bed, she said. "I don't want to get emotional, but it was like, days that I daydreamed with being by the beach and just walking around, you know? Just I needed a break."
The report says two-thirds of Florida's dementia caregivers report at least one chronic health condition of their own and 29% are dealing with depression.
Mercado said she learned to ask friends to stop by and to stay connected with her church family.
Things changed dramatically a few months ago, after her mother fell, becoming bedridden, and a doctor placed her under hospice care. A certified nursing assistant visits regularly and bathes her mother. A volunteer gives her a break for five hours every week.
"That gives me an opportunity to go out on a date with my husband every week," Mercado said. "So it's something that we cherish."
Across Central Florida, in an apartment near Ocala, Dee Galloway, said she was a caregiver for her father, who died with Alzheimer’s in 2017. Now she leads a support group and tries to provide hope and resources to other families.
Galloway’s mother has Alzheimer’s now. Her sister is the primary caregiver, and Galloway finds herself in a support role.
"My sister needs someone to hear her, all ranges of emotions, I get it, clearly," she said. "To not try to fix things, but to just listen. And when the ups and downs occur with mom, she can talk to me and know that I know that she's doing the best that she can."
Stefanie Wardlow is a senior program manager with the Alzheimer’s Association in Florida, which is a resource for caregivers. She said there’s a need to reduce the burden on families. In Florida alone, their care has an annual estimated value of more than $24 billion.
"We need these family caregivers," she said. "However, we also need them to be healthy so that this can continue."
The GUIDE Model
One promising resource in the works is the Guiding an Improved Dementia Experience Model, an approach that includes the patient and caregiver. The GUIDE Model -- through the Centers for Medicare & Medicaid Services -- starts in July.
Dr. Nicholas Doher is the point of contact for the University of Florida’s GUIDE application.
Beyond the clinical visit, he said, wouldn't it be great to have a care navigator on the treatment team to put together a plan, provide education and training, and offer access to resources? And wouldn't it be nice to have a 24/7 call center and to visit the home where the patient lives?
"All with the goal of keeping patients with their families as long as possible," he said. "I mean, that would be absolutely fantastic, and that's what the GUIDE model is looking to accomplish essentially."
Doher said it will fill gaps in Alzheimer's care and take a prospective approach, getting ahead of the game, instead of just reacting to the needs raised by caregivers.
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