Lakshmi Kunta helped raise all six of her grandchildren when she immigrated from India to the U.S. She taught them Telugu, her native language, and took them to the temple, showing them how to honor their heritage.
Now she can’t remember their names.
This is what dementia can look like. Kunta was diagnosed about three years ago, and now at age 77, she is completely reliant on her husband and her children to care for her.
Dr. Glenn E. Smith, a neuropsychologist and professor at the University of Florida, defines dementia as any decrease in cognitive function that affects the everyday life of a patient. The rise in an aging population, as well as dementia patients, is creating an additional problem according to Smith. It’s putting a strain on patients and their families, both socially and financially.
“Obviously that is really hard to witness, but more than just feeling sad,” said Nithya Kunta, Lakshmi’s granddaughter. “I feel helpless.”
Smith said cognitive decline can manifest in many ways from changes in memory, language and attention: all things Kunta witnesses declining in her grandmother.
“The average age of the population is growing rapidly in part because of all the baby boomers getting into that age and in part because the birth rates are down substantially,” Smith said.
According to FL Health Charts, the elderly population in Alachua County alone has increased by 10,000 in under seven years. This trend has increased the number of dementia patients, both nationally and in Alachua County.
Although the number of dementia cases is rising, the rate at which dementia affects patients remains the same. However, Smith recognizes the impacts dementia can have on families.
“It would be really easy to just not want to engage with her because of the frustration or the helplessness,” Kunta said.
Her father encourages her to keep talking to her grandmother by asking her about her life and redirecting conversations if she seems to be getting frustrated.
Caretakers of dementia patients play an imperative role in determining the rate of the patient’s decline and assessing the level of care they should receive.
“A lot of the way we gauge how impaired a person is through reports of their care partners,” Smith said. Caretakers have to report changes in behavior for their patients because they can’t report it themselves.
Being a caretaker of someone with dementia can be taxing, leading to poor mental health, both for the patient and for the caretaker, Smith said.
“I need patience, but the patients themselves need patience because they don’t know what’s happening. It’s really sad to see my grandma cry out of frustration because she doesn’t remember things,” Kunta said.
Aside from being a mental struggle, dementia care can be a financial burden for patients who aren’t fully covered by their insurance.
“Alzheimer's disease is probably the most expensive health care condition in our society at this time,” Smith said.
Smith explains that most people over 65 in the U.S. are on Medicare, and while doctors' appointments and medication may be covered, the cost of caretakers, either at home or in a facility, is typically not.
The average cost of an assisted living facility in Florida is over $6,000 a month according to Dementia Care Central. For in-home dementia care, it would cost you upwards of $22 an hour according to Consumer Affairs.
In terms of treatment, Smith said scientists are still attempting to develop drugs to stop and reverse brain cell death. In the meantime, treatments are aimed at improving quality of life and slowing the decline in cognition.
To counter the cognitive decline of patients, Dr. Smith developed a treatment program during his time at Mayo Clinic. It’s called HABIT: Healthy Action to Benefit Independence and Thinking.
And like the name implies, it's about building habits. Patients engage in daily repetitive tasks, like writing notes and facts about themselves, so they eventually don’t have to think about it. It just becomes a habit.
Smith said even people whose short-term memory is failing, “can form new habits through repetition: that’s called procedural memory.”
Psychology sophomore at the University of Florida, Avery Gauthier, is working on his own program to help combat cognitive decline, but has a different approach.
“Sundays with Avery” consists of musical performances, games, group discussions and a fan favorite, snacks and prizes. Volunteering through Community Hospice & Palliative Care, he was able to take his passions and combine them into a program to help socialize and mentally stimulate the patients at Park Meadows Health and Rehabilitation Center.
“What if I could go to a nursing home and run a program that combines fun activities with thoughtful and reflective conversations and also, I can perform?” Gauthier asked his supervisor.
Now, 18 Sundays later, Gauthier continues to dedicate his weekends to spending time with patients and expanding his program.
He works alongside UF senior, Carl Henri Backer, who has been volunteering with Community Hospice and Palliative Care for about a year.
Just before Gauthier brought out his trumpet on Sunday, he asked, “Who knows Stevie Wonder?” Almost everyone raised their hands or shouted in agreement.
Gauthier hopes to continue this program during his time at UF and expand it to more musical performances and even more facilities. But his main goal is to provide these patients with a good time.
If he can bring, “one smile, one sense of joy and connection,” Gauthier considers it a success.
Caption 1: The program “Sundays with Avery” is hosted every Sunday at Park Meadows Health and Rehabilitation Center. Here is the main entrance to the assisted living facility where volunteers and health care providers check in. Photo by Marina Meretz, WUFT News.
Caption 2: Carl Henri Backer handing a sticker sheet to a patient at Park Meadows Health and Rehabilitation Center. The prizes and snacks are provided by Community Hospice and Palliative Care. “It's not much, but we do what we can,” Backer said. Photo by Marina Meretz, WUFT News.
Caption 3: Gauthier plays news songs every week on his trumpet for the patients at Park Meadows Health and Rehabilitation Center. Here, he is playing “I Just Called to Say I Love You” by Stevie Wonder. Photo by Marina Meretz, WUFT News.