Each time Southwest Florida resident Randy Badras returns from her morning bike ride, she knows there’s a chance her father won’t be alive to answer when she knocks on his bedroom door.

“And then it’s over,” she said. “That’s really what we’re waiting for.”

The “it” is the years-long struggle of caring for her 97-year-old father, who has Alzheimer’s disease. What started as occasional assistance has become a full-time role. Her mornings are her only respite while her husband feeds her father breakfast. The rest of the day is consumed with care.

Badras is now the keeper of memories for the man who once doted on her, his only daughter, “princess of the house.” The father who gave her chocolates on Valentine’s Day and took her fishing on weekends in Long Island now remembers less and less.

She is not alone. Millions of families face similar heartbreak as Alzheimer’s “spreads.” Nearly 7 million Americans aged 65 and up have the disease, according to the Alzheimer’s Association, with projections reaching nearly 13 million by 2050.

Those figures have staggering effects on families, as more than 11 million Americans provide care without pay for people with Alzheimer’s or other dementias, contributing an estimated 18 billion hours of care valued at nearly $350 billion in 2023.

Adult children and spousal caregivers are often thrust into an all-consuming role they never expected, which demands everything — emotionally, physically and financially. There is no reward at the end beyond relief from witnessing a loved one’s suffering.

“I get asked often, ‘Is your father happy?’ You don’t see happy,” Badras said. “We used to think he was content, but I don’t know that he’s capable of being content anymore. It’s just sad. Really sad.”

Caring for someone with compromised cognitive function is relentless, but unlike the around-the-clock care of raising a newborn, there’s no hope of a bright future for adults affected by Alzheimer’s.

“With a child, you know they’re going to grow up eventually, and you’re enriched by giving the most to that child over a period of time, helping shape them and preparing them on their way to a happy life,” said Eric Brown, owner and president of Assisting Hands Naples, an in-home care agency for seniors. “With this, there’s just no happy ending.”

An escalating epidemic

In Florida, Alzheimer’s cases are expected to increase by 30% during the next decade, according to the Alzheimer’s Association, making it a public health crisis. In Naples alone, more than 22,000 older adults have dementia, an umbrella term for a range of symptoms affecting cognitive abilities that interfere with daily life, reported The Baker Senior Center Naples. It’s one area organization working to support the Badras family and others.

“Caring for someone with dementia really upends your life,” Dr. Jaclynn Faffer, president and CEO of Baker Senior Center Naples, said. “Everything changes.”

The burden of caregiving is often invisible to outsiders, but it is an unrelenting struggle for families who find themselves walking a tightrope between grief and devotion.

“Until we get a cure, more and more people seem to be experiencing this and struggling with it,” said Karen Rodino, family consultant, brain fitness center educator and music connection coordinator at Alzheimer’s Support Network in Naples.

A cure remains elusive, but funding has been increasing. In 2013, the U.S. government allocated approximately $448 million annually to Alzheimer’s research. In 2024, that figure rose to $3.8 billion, according to the Alzheimer’s Association.

Two families, two journeys

At her father’s 97th birthday party, Badras watched as he failed to recognize his own family. He barely knew his son’s name, couldn’t remember he’d been to his house where the party took place, wasn’t sure how he was related to his nephew.

Her world has shrunk, isolated from the retirement life of travel and community involvement she once envisioned. Even casual conversations can be draining.

“The first thing people ask is, ‘How’s your dad?’ Not, ‘How are you?’” she said.

Yet, she considers herself lucky. “There are people who deal with violence and all sorts of uncomfortable behaviors [when experiencing dementia],” Badras said. “My father is basically very passive, which makes it easier to manage him.”

Stacie Ricci, a retired Naples real estate agent, wasn’t so fortunate. About five years ago, her husband began showing signs of Alzheimer’s and vascular dementia.

“As it progressed, it made him extremely anxious all the time and extremely claustrophobic,” she said. “He was getting so aggravated that he was hurting himself, causing bloody arms. Then, he eventually became very threatening to me. This was not like him. I knew it wasn’t him.”

Her husband of 46 years didn’t recognize her. He thought she was an impostor trying to steal money. The police were called. He was hospitalized. Now, the former owner of an institutional pharmacy business serving nursing home patients is in a full-time memory care facility.

“I just feel like he was taken away from himself,” Ricci said. “He’s lost himself, and he can’t ever be who he was again. It’s extremely sad.”

Both women faced agonizing decisions about providing care and struggling to preserve their loved ones’ dignity while watching them disappear.

As days bleed together, marked by stress and heartache, they’ve each turned to local resources for help, seeking respite care, counseling or support groups that allow them to connect with caregivers’ complex decisions and pain.

Lifelines for caregivers

Brown, the Assisting Hands Naples owner, knows the devastation that families affected by Alzheimer’s experience firsthand. Years ago, he knew something was seriously wrong when he visited his mom in Pennsylvania after she’d had a few falls.

“She started screaming at me and cursing, and these are words that never came out of my mother’s mouth,” he said. “I remember being quite emotional about it, thinking ‘I’ve lost my mother, I’ve lost my mother.”

The next day, she was herself again, but the incidents escalated. Eventually, he and his brother moved her to Florida and placed her in a memory care facility, where she lived out her final years.

Now, he uses his personal experience to help other families.

“I run the company from a client mindset because that’s what I have,” Brown said.

Assisting Hands sends out nurses for initial assessments and weekly follow-ups to monitor care plans, supervise caregivers and ensure quality of services. All caregivers are direct employees, not independent contractors, which can make a significant difference, he said.

Nurse registries use independent contractors, which can lead to limited oversight and potential risks, while directemployee agencies maintain control over caregiver quality, training and supervision.

Brown urged people seeking care to research whether caregivers are direct employees or independent contractors, and to be proactive in searching for the right fit rather than waiting for a crisis and scrambling for relief.

“There have been so many cases where, if people would have called us before, their mother or father wouldn’t have fallen and broken their hip and changed their whole life as a result of that catastrophic fall,” he said.

Rodino, of Alzheimer’s Support Network, also finds herself in a position supporting families after experiencing firsthand the challenges of caring for her mother with Alzheimer’s. She moved from a 35-year career as a high school teacher to join the organization that had supported her own family’s journey.

The independent nonprofit in Naples, operating for 44 years, provides approximately 30 monthly support groups, including specialized groups for Lewy body, frontal temporal and vascular conditions. It offers educational opportunities, engagement activities and family consultations. All the services are free, with in-person and online options, which can relieve families facing the financial strain of this costly disease.

Home health care, adult daycare and memory care placement can range from $6,500 to $10,000 monthly, Rodino estimated. Very few families have long-term care policies, and Medicare doesn’t cover memory care community placement. As a result, families often end up self-funding these expenses, depleting savings, retirement funds, inheritances and other financial resources in the process.

Baker Senior Center Naples is another solution in Southwest Florida, offering a three-pronged approach to care: services for individuals with dementia, support for caregivers and educational programs for the community. The centerpiece is its evidencebased daily Dementia Respite Program, which keeps participants actively engaged for four hours while providing caregivers essential down time.

“It is not daycare. [Participants] are engaged from the minute they walk in until they leave,” Faffer said. “They receive a hot lunch that they have with other members of the program. And during those four hours, it gives the caregiver respite to do what they need to do to take care of themselves.”

While it does not cure the disease, the program offers relief and cognitive engagement.

The educational component provides tools for businesses and community members encountering a person with Alzheimer’s, including training for Naples’ bustling restaurants and hospitality venues on handling situations involving customers with cognitive decline.

The caregiver support services mean everything to people such as Badras, who finds a relatable community at Baker Senior Center.

“I appreciate being able to vent to people who totally understand,” she said. “I walk out of there, no matter what, smiling, feeling supported, heard and like I offered information that might be helpful for people. It’s something I actually look forward to.”

Giving up guilt

Despite the relief that structured support can bring to families experiencing Alzheimer’s, caregivers can still hesitate to seek help due to emotional attachment, loss of control, trust issues, lack of awareness and guilt.

“I didn’t want to have to use a facility,” Ricci remembered. “I always thought, if something happened to him, I could take care of him with some help.”

Sometimes, the most challenging step is admitting the need for such resources, but timing is crucial for improving the quality of life for both the person with the disease and the caregiver.

“You can’t be afraid to ask for help,” Badras said. “It’s hard for people to admit that there’s a problem. That’s where we were at. We had no idea what we were dealing with for the longest time. But, when you finally start talking to people, you start to understand more.”

With the right care, relationships can still exist, even if they look different.

Ricci visits her husband at his care facility regularly, bringing him treats to brighten his day and to remind him she’s still there, still his wife. She encourages others with a loved one battling Alzheimer’s to remain present, however they can.

“Your spouse is still your spouse, just very different,” she said. “Continue to show them love through the whole ordeal because they’re suffering just like you’re suffering. They don’t know what happened to themselves. You just need to be there so they can hear your voice. Don’t take them somewhere and leave and not visit.”

Her thoughts returned to her husband as she added, “I would rather just be there so he knows he’s still married and has a wife.”