Baker Senior Center Naples, formerly Naples Senior Center, opened its new 30,000-square-foot facility this month.
* Medicare launched a new program called GUIDE (Guiding an Improved Dementia Experience) to support individuals diagnosed with dementia and their caregivers.
* The program offers a $2,563 respite care benefit, caregiver navigation, caregiver education and support, and a 24/7 support line.
* GUIDE aims to improve the quality of life for people with dementia and reduce caregiver stress, but more awareness is needed.
It's a start and long overdue.
That's how people who work in dementia care see a new Medicare benefit of $2,500 to serve diagnosed individuals and their caregivers.
What comes next is appreciation that the Centers for Medicare and Medicaid Services established the benefit that families can use for respite, or breaks, from caregiving.
Health care professionals see how families struggle. They know respite is essential for family members who are bone tired, anxious and feel adrift in need of a lifeline of support on all fronts, including financially.
"Without access to respite, caregivers frequently neglect their own health," Christine LoConte, executive director of The Dubin Center, an Alzheimer's disease support center in Lee County, said. "The lack of rest and time for self-care contributes to long-term physical strain and burnout."
What's dementia? What's Alzheimer's?
Dementia is a broad term used to describe loss of cognitive abilities such as thinking skills, memory, problem solving, and language.
Alzheimer's disease is the most common form and accounts for 60% to 80% of dementia cases, according to the national Alzheimer's Association.
Data on the projected uptick of dementia is alarming. Researchers and think tank organizations repeatedly advise that families and the health care industry are woefully ill prepared to respond now and down the road with an avalanche of new cases.
Dementia affects more than six million Americans, according to February data from the National Institutes of Health. The national Alzheimer's Association puts the number at seven million.
An estimated 42% of Americans over age 55 will eventually develop dementia, according to NIH.
Florida, with its preponderance of elderly, has a 12% higher incidence than other states, joined by North Carolina, South Carolina and Georgia, according to a June 9 study published in JAMA Neurology, a monthly journal of the American Medical Association.
What is the $2,500 benefit?
The Centers for Medicare and Medicaid Services Innovation Center launched what's called GUIDE in July 2024.
The acronym stands for Guiding an Improved Dementia Experience, and the intent is to improve the quality of life for people with dementia and reduce caregiver stress.
It is a demonstration, or pilot project that will span eight years, said Dr. Adam Perry, a geriatrician in Southwest Florida and founder of Healthspan Partners of SWFL.
Healthspan was chosen by Medicare to offer the GUIDE program in Lee, Collier and Charlotte counties, which involves enlisting a network of providers.
For families to participate, there must be a confirmed diagnosis of a loved one with dementia and the individual must be enrolled in traditional or original Medicare. The diagnosed individual cannot be enrolled in a private Medicare Advantage plan or in hospice care.
So what does GUIDE offer?
There are several components to GUIDE, one of which is the respite care benefit; two others are caregiver navigation and caregiver education/support, Perry said.
Another is reducing accidental events that lead to hospitalizations which can heighten confusion and lead to greater loss of functionality. GUIDE also offers a 24/7 support line.
The respite care benefit started in 2024 at $2,500. This year it pays for $2,563 worth of respite service. It can be provided in the patient's home through an approved agency, at an adult day center or in a facility that provides 24-hour care, Perry said.
"All of these types of respite are available to give the caregiver some much needed time to focus on some of their other needs or have time off," he said. "They call it respite but it's really caregiver time off."
Respite care can be unaffordable for many families, Stephanie Watts, health systems director for the Alzheimer's Association in Florida, said in an email.
"The GUIDE model's services are a starting point to give these families at least some reprieve, in addition to services offered through the state of Florida," Watts said.
"We also know that highly impacted populations, including Black Americans and Hispanic Americans, are less likely to take advantage of respite services. Providing some coverage to these services could help to increase utilization and provide better quality of life," Watts said.
For patients in an assisted living or memory care center, the benefit can be used when the family caregiver is called upon to provide additional support. That occurs when the patient is admitted to a hospital or transitioning between settings, such as moving into senior living or returning home from the hospital.
"The 24/7 option is often used when the family caregiver is unable to provide care in the home due to a medical event or travel," Perry said.
Caregiver navigation helps families learn about resources in their community, along with helping them access medical care. There is training to learn coping skills, especially as their loved one's behavior becomes more challenging.
"We have multiple modalities to help caregivers learn about the disease, the progression of the disease, and to help them get some of the skills, particularly skills to help themselves, and skills to help with the distressed behaviors," he said.
Getting the word out
While the program began a year ago, getting word out to has not been easy. A primary culprit is that people with dementia and their caregivers are often isolated.
"We find that many older adults are quite understandably wary of people calling them and talking about new Medicare benefits," Perry said. "And so we work with our partner organizations, through our care navigation partner organizations who are tremendously respected for decades in our community."
The Alzheimer's Support Network in Collier is handling the care navigation piece of GUIDE in Collier, Clarke Pollard, president and chief executive officer, said.
The network was founded in 1982 and serves 5,600 families with family support and has been providing care navigation long before GUIDE came alone.
"That's our prime function is to provide care navigation," Pollard said. "A family can ask any question under the sun."
In Lee, the Dubin Center is the care navigator for GUIDE.
"The most common sentiment caregivers express is a deep sense of regret that they didn't seek help sooner," LoConte said.
What's the rate of Alzheimer's disease in SWFL?
Data from the state Department of Health shows Florida had 557,084 "probable" cases of Alzheimer's disease last year among the roughly 5 million residents who are 65 and older.
The Alzheimer's rate in the state is 11% for that age group, on par with 2023.
In Southwest Florida, the data is disheartening.
Collier's rate of Alzheimer's is 12.4%, above the state average. Lee is at 11.4%, the data shows.
In terms of actual numbers, Collier had 17,415 cases last year among the 140,369 residents 65 and older. Lee was at 27,179 cases among 237,773 residents aged 65 on up.
What do local program officials say?
The Dubin Center was founded in 1995 to address the lack of resources for families; today it is a "comprehensive caregiver support hub," LoCante said.
Last year the center served 630 clients through nearly 3,000 program interactions.
"Together, these programs offer a dual benefit (of) support and education for the caregiver, and engaging, structured activities for their loved one living with dementia," LoConte said.
But the Dubin Center is not a licensed adult day center so it cannot take part in the respite benefit through GUIDE. Neither is the Alzheimer's network or the Baker Senior Center Naples.
But all three centers offer their own respite and dementia programs for families.
"We choose not to provide day care because we know in four hours (of our program), we can keep that client completely engaged, whereas in daycare you really can't, it's too many hours," Jaclynn Faffer, president and chief executive officer of the Baker center, said.
The Alzheimer's support network offers three hours of free respite time on Fridays, held at Terracina Grand assisted living in Naples under its license, Pollard said. The caregiver is allowed to leave to take care of other matters, he said.
Caregiver meetings are held at the network's center in Naples while the loved one with Alzheimer's can go to the brain fitness center at the same time to be engaged with others, he said.
Where are adult day care centers in SWFL?
The respite benefit though GUIDE can be used so far at Choices in Living Adult Day Care in Cape Coral and at Harmonia The Club in Naples.
Kathy Hudson, owner of Choices, is licensed for 30 clients a day but tends to stay at 18 a day. She was approved in March to be a part of GUIDE's respite program.
"I was very excited. It isn't enough but it's a start. Medicare wasn't doing anything (before) for caregiver respite," Hudson said. "It has helped so many of our families that come to the center."
At Harmonia The Club, co-owners Miriam Leskanicova and Peter Spisak are licensed to have up to 38 people. They call them members as opposed to clients to help avoid stigma tied to dementia.
"They come to socialize, to have fun," she said. "It resembles a club setting."
The members will break into small groups for various activities, from arts and crafts to trivia, and meet up again for lunch. There is exercise time, reminiscing sessions and lots of music.
The GUIDE program is much needed to get more families connected to services, she said.
"This is a help to families, it's a great benefit for the families to use," she said. "We are thrilled."
How far can $2,500 go in respite care?
It is progress that Medicare is recognizing unpaid caregivers but the $2,500 respite benefit doesn't go very far, Faffer, of the Baker senior center, said. Respite services can cost a small fortune.
"It's really just a tiny first step," she said.
Typically a home care agency charges $35 an hour, so using it for home-based respite comes to about 80 hours for the year, Pollard, of the Alzheimer's network, said.
But there has been one unexpected bonus, he said.
"We have people who were trying to hold out as long as they can. It's almost this idea that if I do it all myself it's a badge of courage," he said. "Now they say, 'I have this benefit. I might as well use it.'"
What is the value of unpaid caregiver hours?
About 12 million Americans provide unpaid care for people with Alzheimer's or other dementias, according to the Alzheimer's Association.
That added up to 19 billion hours in 2024 at a value of $413 billion.
In Florida, the association said there are 870,000 caregivers who provided 1.4 billion hours of unpaid care. The value is just shy of $30 billion.
More so, caregivers often have their own medical issues, with 66% having chronic heart conditions and 28% have depression.
The lifetime cost to care for someone with dementia was $405,262 in 2024 dollars, of which 70% is out of pocket by the family. The remaining costs encompass payments by Medicare and Medicaid.
Medicare will cover diagnosis of dementia and Alzheimer's, for seeing your physician and for at least two drugs to treat Alzheimer's through a patient's Part D drug plan, according to the National Council on Aging.
It will cover nursing home stays up to 100 days after a hospital stay but does not cover assisted living.
How about a virtual dementia experience?
For families newly facing a diagnosis, a virtual dementia tour can help them gain insight into what their loved one is facing.
Dubin, Alzheimer's network and Baker center all offer a dementia virtual tour through a company called Second Wind Dreams, based out of Roswell, Georgia.
A participant is given vision limiting glasses, headphones with garbled messages and other outer wear to simulate how the senses and their physical being can be restricted with dementia.
The virtual tour has a shock element but also aims to promote empathy and compassion for what their loved one is experiencing, Pollard said.
"We have to take that raw experience and say, 'Let's make sense of this,'" he said. "How can we apply this actively when you're in that caregiving role?"
The Baker center added a play-acting component with a couple of actors from Naples Players. They do a scene between a caregiver and a loved one. After a group does the dementia tour, they are asked to offer suggestions to change the play-acting scene to be more empathetic.
A scene can be tailored to whatever group is coming for the virtual tour, Faffer said. For example a scene can be in a restaurant so wait staff gain perspective and understanding how challenging the disease can be.
"I think this is one of the most incredible things we are doing," Faffer said.
Polland said the Alzheimer's network offered the dementia tour to Collier County Sheriff's deputies some years ago.
"We had 80-plus deputies go through it at that time," he said. "It's an impactful tool."