A tragic disease robs patients of their memory, but makes their visual world flourish

WESTBOROUGH, Mass. — Carol Spence had been an accomplished artist all her life, first working in graphics, and then as a maker of handcrafted, miniature dolls, which she sold at craft shows and galleries.

Three years ago, without notice or explanation, she took exclusively to the canvas, creating work that little resembled her past work. Two-dimensional animals and people. Smiling fish, floating near butterflies. Frogs with a variety of facial expressions.

More recently, she lays these images against a backdrop of perfect, shaded squares.

“She’ll just go for hours at a time,” said her son-in-law, Padgett Berthiaume.

The shift was not just a stylistic change but also a curious symptom for some with frontotemporal dementia, a little-known degenerative brain disease that afflicts between 50,000 and 250,000 Americans. Spence, 68, was diagnosed with the condition in 2011.

The symptoms of FTD, as it’s known, vary, depending on where the disease first appears. When it starts on the right side of the frontal or temporal lobes, the patient’s personality changes, and he or she often struggles with social interactions.

If it starts on the left, as was the case with Spence, they lose their language abilities instead. But as patients’ spoken vocabulary dwindles, their interest in the visual world flourishes. Even patients with no previous interest in painting or sculpting, for instance, will often plunge themselves into these pursuits, sometimes obsessively.

Spence’s neurologist, Dr. Bradford C. Dickerson, said these flights of artistic creativity — or, in Spence’s case, a sharp change in creative expression — often surprise and mystify family members. Some are reluctant to acknowledge or embrace it, he said, possibly because it signifies a shift away from the person they knew and loved.

Dickerson said families who encourage these changes, though, can find as much solace in this phase as the patients do. “It can be a source of pleasure and hope and optimism in an otherwise pretty devastating state of affairs,” he said.

No known artistic geniuses have yet sprung from the FTD population (though some believe the composer Maurice Ravel composed “Bolero” as his FTD symptoms deepened). Rather, the works of FTD patients are more typically marked by geometric precision and pattern repetition, than, say, a depth of insight or surpassing beauty. Other FTD patients have created intricate lighthouses by gluing seashells to canvas, for instance, or have created tabletop mosaics with tiles.

Patients in whom FTD first strikes the right side of the brain, meanwhile, often grow deeply interested in simplistic puns and rhymes.

In a way, the impulses toward recurring, simplistic patterns and themes are in line with the broader challenge of living with progressive dementia — namely, finding order and sense amid gathering chaos.

After Spence absorbed her diagnosis, she created a bulwark for the future — notebooks brimming with annotated photographs of loved ones and important places, and colored drawings of important people or things: Santa and a wreath, in a section labeled “December-Christmas”; dozens of creatures on a page labeled “Animals.” The alphabet.

In subsequent years she might struggle to remember the name of a family member or the word for “car,” but she could point to them while telling the story of a road trip.

Spence’s vocabulary now includes only a handful of phrases, which she uses no matter the conversation’s context. “I do a lot of artwork,” and “I’m getting worse and worse with words,” are among the most frequent.

In her room at an assisted living facility here on a recent day, she was generally in good spirits, dancing enthusiastically to a recording played by a stuffed frog on her bureau, and taking photos of visitors to log in her journal. She grew momentarily downcast only while conveying her feelings about being unable to walk outside freely.

Dickerson, who researches and practices at Massachusetts General Hospital, said he is studying FTD patients not only for possible treatments — of which there are currently none — but to further understand the brain’s functions.

The artistic impulses “make me think there’s something in most of us requiring both sides of the brain to be in some type of balance that keeps us more or less equivalently interested in the verbal and visual world,” he said. “It’s a fundamental feature of our brains we don’t understand yet, but we’re starting to make observations about.”

Dickerson said an FTD patient’s artistic phase lasts between three and five years. After that, the disease progresses to advanced dementia.

In the meantime, caregivers can take some solace in the fact that, simplistic though the patients’ creations may be, these works are a physical token of how their loved ones found something that could bring them great peace.

Berthiaume said the family is, sadly, braced for the future, and for Spence to leave a canvas unfinished.

“We know it won’t last forever, but we’re hoping it can continue for a while longer,” he said. “It’s been great for us to know that she still has something she can do, and that she can enjoy.”