My Tico Heart: Katya De Luisa, Discovering Dementia in Sarasota
After two decades in Costa Rica and the year in Guatemala, Florida was a hell of a culture shock. I'd never been in a Walmart, and while trying to find the shampoo, I became sensory overloaded, panicked, and couldn't find my way out or find the car in the parking lot once I was out. Never did get the shampoo.
My friends had left on vacation, leaving me to care for their beautiful Victorian house in the middle of Sarasota’s historic district. I bought a bicycle and delighted in exploring the waterfront, the beaches, and the town streets lined with old Oak trees covered in hanging Spanish moss.
While working a temporary job with a catering company for swanky parties, I also got an up-close look at the lives of the rich and famous, quite the contrast to my Central American living.
Eventually, I rented a live/work studio at the Towles Court Art Colony, my creative passion returned, and I immersed myself in local cultural events. Sarasota prides itself as an arts town, so it was easy generating income from art sales and conducting expressive art classes at my studio and arts centers around town.
One afternoon while riding my bike down a fascinating block of restored Victorian houses, I was drawn to where several elderly people were milling around an enclosed yard. A woman was sitting on the front stoop, and after inquiring if it was a hotel, she explained it was an assisted-living facility; she was the administrator.
During our chat, she offered me a part-time job to create an all-inclusive art workshop for the residents. Never having worked with the elderly, I was a bit hesitant but accepted--never realizing how challenging this would be.
My first workshop was a simple watercolor class in their dining room after breakfast. The staff seated ten residents at the indicated places, equipped with brushes, paper, and paints.
However, most participants just stared off into space, a couple fiddled with the materials, and only one seemed to be aware of my presence when I asked them to pick up their paintbrushes. An employee explained the residents had dementia, predominately Alzheimer’s, and she didn’t believe they could do art.
My first thought was, “What’s Alzheimer’s?”
Deciding to learn about dementia through direct interaction with the residents, I hung out at the facility on my own time. I helped with the care, sat and talked with them, assessed their abilities, and discussed their histories with their families. But mostly, I observed.
I haunted the local library for videos on brain function, both normal and impaired, and watched six hours of these videos a day, taking hundreds of notes. I thought of nothing else, and a continuous flood of ideas bombarded me day and night, which I jotted down in the notebook I always carried. Eventually, this dementia intensive clarified my understanding of human brain function and the effects dementia has on it.
Of all the challenges the person with dementia faced, the saddest was the loss of communication abilities; they’d withdraw into their own world, alone even when surrounded by people. My personal collage art had always been a way to express myself, and I wondered if this technique could work for them.
Each resident was assigned a family member or volunteer to act as a companion to help with cutting and pasting if the person wasn’t willing or able. The resident selected images from magazines and placement, and the companion then discussed these images with them.
It actually worked!
This soon revealed collage making was more than a simple art activity; it was also an effective tool for encouraging interaction and increasing communication. The picture associations stimulated their memories and past experiences and enabled those with dementia to express their thoughts and emotions. The families were invaluable with their feedback on how the picture selections related to the lives of their loved ones.
I fine-tuned the workshop, and eventually, a method emerged which worked even with nonverbal persons.
I called the process Collage Communication Technique. (CCT)
One of the families offered me a $5,000 donation to expand the workshops. After approaching the local Alzheimer’s Association, we partnered, accepted the donation, and began working on the project full-time. I developed caregiver training and eventually presented the “Return to Innocence” program at several international conferences on aging.
The Community Foundation awarded the association a $25,000 grant; I expanded the work, now incorporating CCT workshops in the activity’s programs of numerous eldercare facilities.
I launched a community awareness program giving those with dementia a voice by exhibiting their collages and conversations at libraries, art galleries, and eldercare facilities. The Sarasota library has a million visitors yearly, and the director said the exhibition was the most frequented they’d ever had. The media caught on, and the program grew.
After a couple of years commissioned by organizations like Hospice, Florida Council of Aging, and many upscale eldercare facilities, my life seemed pretty on track.
By now, most of the smaller care homes were either bought up or were run out of business by the corporate eldercare chains. I conducted training workshops of professional and family caregivers in many of these facilities, and despite their high cost and upscale appearances, I witnessed atrocities.
Unlike my first small care home where everyone was together, these places often had a hundred residents or more with three stages of care that separated them. Despite the luxury appearances, most "Memory Care" units were always locked, and the ambiance was reminiscent of a mental hospital with dementia residents aimlessly wandering or sitting around with blank stares. Despite high fees, the bigger places were consistently understaffed, and many offered financial incentives to entice new employees, which created a revolving door of short-term staff.
Once I encountered a frail old man in a wheelchair in front of the nurse's station. He was crying out, "Cold…too cold." The nurse at the desk ignored him. I touched his arm, and it was like ice! Bringing this to the attention of the nurse, she replied, "Oh, he has dementia, and he’s always saying that.” Furious, I got several warm blankets from the storeroom and wrapped him from head to toe. He slowly looked up at me and, with eyes brimming with tears, said, "Thank you." That night I cried like I cried so many nights for the others I encountered unattended in these places.
I began offering advocate work to families of residents in facilities. I regularly visited at odd hours, spent quality time with the resident, often creating CCT journals with them, and reported back to the family to ensure their loved one got the proper care, especially medical attention when needed. The latter was often overlooked in bigger facilities.
Families occasionally hired me as a part-time private caregiver. This taught me about the family dynamics and the challenges encountered caring for someone in the family home. I also offered an advisory service creating safe home environments and developing individualized care plans designed to address the specific needs.
At that time, in 2001, the Alzheimer's Association statistics indicated over one million people in the US lived on their own with dementia. After working with several clients still living independently in their own homes, I became very aware of the dangers they faced.
One day, I encountered a confused old man on my carport. He said he was lost and couldn't find his home. He wasn't a street person, but his clothes were dirty, and he smelled of urine and feces. I offered to drive him around searching but first put plastic on my car seats, opened every window, and tried not to gag from the smell. After an hour of canvassing the neighborhood, he pointed and shouted, "There it is!" and with his hands covering his face he sobbed with relief. Turns out he'd been lost for days wandering the neighborhood, and his home was just three blocks from my place where I found him.
Sarasota was a beautiful place, but it wasn't Costa Rica and that old familiar itch to relocate appeared again.
Ever since leaving home at 15, I've moved from place to place, closing doors behind me as I excitedly rushed towards the endless possibilities of the next place. My father was a traveling salesman and the first generation from a Croatian gypsy family, so it's in my genes. He met my mom in a dance hall, she ran off with him, and after I was born, they continued traveling the country my first six months with me in the back seat of the car. But that’s another story, so let’s get back to this one.
I sold everything and boarded a plane to Costa Rica.