Note: This article is the first part of a three part series sharing the wisdom of Katya De Luisa, a dementia educator and author of “Journey through the Infinite Mind–the Science and Spirituality of Dementia.” Read part 2 and part 3 here.
“We never lose those we love, whether through dementia or death. They are a part of us.”
– Katya De Luisa
Katya De Luisa is a dementia educator, caregiver coach, and author of “Journey through the Infinite Mind–the Science and Spirituality of Dementia.” She is also an artist who specializes in art therapy. For De Luisa, art is more than just aesthetically pleasing. For her, it’s a window into the inner workings of the mind — and a way to tap into spirituality. Today we will explore one facet of De Luisa’s writings — communication through art — where she accomplished a nearly impossible feat of getting someone who is nonverbal to communicate with words to a loved one.
According to De Luisa, “(t)he life of every person is a collage composed of pieces of their personal experiences. However, when dementia chips away at the memory and begins to curtail one’s ability to communicate, it’s hard to know what pieces of their life continue to exist, especially when they become non-verbal.” She says, “(u)sing pictures from magazines is a very effective way to find out, and you don’t have to make collages, although doing this is a highly effective reminiscence therapy.”
De Luisa describes a particular couple she worked with:
James had late-stage Alzheimer’s, and Mary had been his wife 48 years, during the last seven of which James had resided in a facility. James wandered incessantly, mumbling to himself and avoiding eye contact. Mary visited every day but doubted James was even aware of her presence.
Mary was hesitant to participate in Katya’s weekly picture communication workshop, thinking James wasn’t capable or wouldn’t be able to sit still long enough. Surprisingly, James remained engaged throughout the entire class. James often turned his face away but remained seated listening as Mary paged through the magazine, talking about the pictures she pointed out.
If he became attracted to a picture, he would touch it, and Mary would cut it and glue it in the collage they were making. Mary discovered most of James’s chosen images related to his past and their life together, and she would talk to him about the memories they brought up.
One day, Mary showed the class their collage. James had been a high school basketball coach, owned a red car, a tractor lawn mower, and built a small airplane. The images and words associated with James’ prior life; however, it was the words, “I’m ok, I’m alive” that jumped off the page. Mary explained he kept touching these words even though she was hesitant to cut them out. She revealed although the pictures seemed to relate to their shared experiences up until now, she was afraid to believe he was still there and somewhat aware. The “I’m ok, I’m alive” clipping convinced her she had not lost him completely.
Katya used this technique with both family of dementia patients and professional caregivers, and similar to the instance described, the results always amazed her.
Communicating through Art
Katya De Luisa has spent the majority of the last 30 years living and working as an artist in Costa Rica, but from 2000 to 2004, she worked with Alzheimer’s patients and discovered a link between her passion for art and helping others, similar to the couple described above. De Luisa believes that art allows people to access their creative side, which she says is a key component of mental health. “It’s not just about art,” she says. “It’s about creativity and problem-solving, bringing something into being and getting excited about what you’re doing. It’s a crucial part of well-being.”
De Luisa stated, “My first experience with dementia was in 2001, after being contracted to create an all-inclusive group art activity for a small nursing home. I soon discovered all-inclusive group activity doesn’t apply to dementia, yet I rose to the challenge and dove in headfirst. My one day a week paid job led to six unpaid days of endless research online and hanging out with the residents. I needed them to teach me.” She said, “My collage making experience paid off and I created a picture communication activity with a companion, usually a family member, helping each resident. Long story short, I eventually partnered with the local Alzheimer’s Association, received a large grant allowing me to transform the activity into a therapeutic experience, and conducted caregiver training in the picture communication process.
De Luisa found that a lot of the people who had mental or cognitive problems hadn’t been able to participate or communicate. But by creating collages, everyone could participate, if they had a companion. Similar to James and Mary, it became a way for them to communicate.
Over the years, De Luisa was contracted by eldercare facilities across the country as well as organizations on aging to help dementia patients communicate through art. After years of doing so in the United States, she returned to Costa Rica where she continued independently offering caregiver training on the picture communication process in Spanish.
De Luisa is now the director of the Infinite Mind Dementia Project in Costa Rica. They provide dementia education, workshops, presentations, home safety assessments, caregiver mentoring and advisory information to eldercare facilities focused on holistic healthy aging and dementia.
Spirituality and the Infinite Mind
Katya De Luisa also looks at spirituality in her research. She questions, “If we are spiritual beings having a human experience, what could be the spiritual purpose to millions of souls living with dementia?”
In her book, “Journey through the Infinite Mind–the Science and Spirituality of Dementia,” she addresses the physical/neurological aspects of dementia as well as spirituality. She explores the following questions:
– “If we are spiritual beings having a human experience, why are millions living with dementia?”
– “Is the mind only what the brain does, or is it more?”
– “What happens to the person’s spirit during dementia?”
– “Can dementia destroy the spirit?”
Her book is designed to inform, encourage, and empower those who are experiencing dementia, their families, caregivers, and health care professionals. It raises questions not normally addressed and encourages the reader to think for themselves and formulate their own answers.
In a future post on Katya De Luisa, we will look at another recent book she wrote that explores dementia and questions such as, “What should you do when your loved one with dementia believes someone whose been dead for years is still alive? When they ask about them, what do you say? When they think they see them, should you tell them the person isn’t there and died years ago?”
Plan Ahead for Yourself and Your Loved Ones
As you can see, practices such as reminiscence therapy using collage can help caregivers and loved ones communicate even with those with advanced dementia. As you are trying such techniques with your loved ones as a means of communication, remember one of the greatest ways to gain peace of mind comes with planning for your future and for your loved ones. If you haven’t yet done your estate planning, or if you don’t have a Power of Attorney with asset protection powers, or if a loved one is nearing the need for nursing home care or is already in a nursing home, please call us to make an appointment for an initial consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
NOTE: This article is part 1 of a 3-part series sharing the wisdom of Katya De Luisa, a dementia educator and author of “Journey through the Infinite Mind–the Science and Spirituality of Dementia.” Read part 2 and part 3 here.
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About Evan H Farr, CELA, CAP
