By Jessica Smith
Before she developed dementia, Sylvia Sinclair was a high school art teacher and a painter.
“She was a maiden aunt, never married, no kids, loved cats,” says Sinclair’s niece, Charlotte McLaughlin. “Owned her own home, was very independent, loved to travel. Travelled the world, spent a lot of summers in Hawaii, painted as she went, sketched and painted.”
At 84, Sinclair continues to paint as her dementia progresses. One of the many abilities dementia has taken from her is to conceptualize how the parts of things she sees make up a whole. Her art is abstract—colours and forms in the paintings aren’t connected into a lifelike whole.
About 450,000 Canadians over 65 years of age have dementia. That number is expected to rise as baby boomers age and live longer than previous generations. Dementia is the second-most feared disease for Canadians as they age, after cancer.
There are drugs on the market that can slow down the onset of some forms of dementia, including Alzheimer’s, but there is not yet a cure.
Without a cure, families turn to finding ways to improving quality of life throughout the progression of the disease. For Sinclair, one way is art therapy.
Sinclair is a subject of the research of Dalia Gottlieb-Tanaka, who earned PhD from the University of British Columbia (UBC) studying the creative abilities of seniors with dementia.
At The Third International Conference on Creative Expression, Communication and Dementia (CECD) at the Emily Carr School in Vancouver in May, Gottlieb-Tanaka will present findings from a tool she developed, along with colleagues in her field, to assess the creative expression abilities of seniors with dementia.
“I don’t want to give it away, but can tell you there are some very exciting results,” says Gottlieb-Tanaka, adding that her research proves that seniors with dementia have creative abilities and can develop new creative skills.
“Creativity only dies when we die,” she says.
Ten years ago, when Gottlieb-Tanaka began researching her PhD, the idea that creativity could be a part of dementia was outrageous, she says.
“The assumption out there was that once you are declared intellectually incompetent, or cognitively incompetent, you lose all your marbles. What people didn’t understand at the time is that just forgetting things, it doesn’t mean that everything else in the brain is gone to pieces.”
While there have been huge gains in understanding of dementia in the past decade, much is still unknown.
“Dementia is a global word that contains 72 brain diseases,” explains Gottlieb-Tanaka. “It means the cells of the brain are deteriorating, they stop transferring information from one cell to another.”
Different dementias have different causes, affect different parts of the brain, and lead to differences in the symptoms that appear. The common symptoms are memory loss, confusion, loss of control over emotions or inhibitions, the inability to process information correctly, loss of rationality and, in severe stages, physical disabilities.
The symptoms can present in unusual ways.
“If dementia attacks the frontal lobe, the mental effect is it releases inhibitions, for instance,” says Gottlieb-Tanaka. “Then, they will tell you things that they controlled all their life that they didn’t want anyone to know, and all of a sudden this richness of information is coming out, and it’s delightful. I mean sometimes it’s painful too.”
One symptom some people suffer from “left neglect,” which means they only see and comprehend the right side of an object.
To illustrate what that means, Gottlieb-Tanaka uses the example of a dinner plate. The person will only eat what is on the right side of the plate, unless it is then tuned 180 degrees, and they can notice the other half of their dinner.
If they are painting a picture, they will only paint the right side, she adds.
Gottlieb-Tanaka is convinced of the value that expression through art has for seniors with dementia whose ability to comprehend speech, to write, or to find words is faltering.
“You know, the motto of our society [the CEDC] is “Art speaks when words fade,” she says.
McLaughlin has sat in on her aunt’s art therapy sessions with Gottlieb-Tanaka. The first one she witnessed amazed her, she says.
“When I would go and visit, Sylvia was at a place where she sometimes would be open to you and sometimes she wasn’t. Sometimes she could communicate well and sometimes she couldn’t. Sometimes she could find the words and sometimes she couldn’t,” McLaughlin says.
“From the beginning of the session to the end Sylvia grew and communicated unbelievably, like she came right out and was finding words and was talking coherently.”
McLaughlin says she is sure art therapy helps artists like her aunt but wonders what art therapy can do for people who are less artistic.
There is no doubt that Sinclair is a special case. In an interview with Gottlieb-Tanaka, when asked what she’d do if she had to give up art, Sinclair answered that she might as well be dead.
However, Gottlieb-Tanaka believes that everyone is creative in some way and so she doesn’t limit art therapy to the visual arts—music, poetry, even gardening can be creative therapy.
Perhaps, it is the communication and connection between art therapist and client, facilitated by creativity, that is important.
“You need to give an opportunity for seniors with dementia to express themselves, then they can enjoy their life, quite a bit,” says Glottlieb-Tanaka. “They crave the human interaction, they crave that someone would pay attention to them and even give them some challenge, and not treat them—and this is my motto—not treat them like they are dead already. Because they are not dead, and it’s amazing how the human spirit comes across if you give them the opportunity.”
The social interaction dementia patients receive in art therapy is beneficial to health and quality of life of a patient with dementia, says Sylta Hellner, a nurse in a lower mainland complex care facility.
“That stimulation, that interaction, that social contact is massively important, it really is,” she says.
Regular contact with familiar people, which includes family members and professional care givers, can ease the anxiety common in dementia patients that can lead to accidents and other health problems, she says.
Hellner explains that an anxious patient will have a more difficult time expressing their needs and will be harder to treat.
“For some of them, they feel like they’re in a brand new environment all the time, and they’re scared,” Hellner says. “They don’t know how they got here, why they’re here or what’s going to happen to them. They really are kind of inside, freaking out.”
Even a patient who doesn’t recognize their family can benefit from their visits, and remember that someone has visited them, even if they don’t remember their name, Hellner says.
When McLaughlin visits her aunt, she tries to find ways to connect with her.
“I try to engage her in something that’s going on, a letter that someone’s written, a picture that I’ve received on her behalf,” says McLaughlin. “And it doesn’t always connect, and sometimes she just starts talking around and around. I let her talk, wherever she talks, I just kind of go with it.”
McLaughlin has found that asking for advice is a good way to communicate with family members with dementia. Even without remembering details they can draw on their life experience.
“And in asking for advice, they intuitively know that they’re still valued,” she says.
Hellner recommends that family members name their relationship to that person when talking to them to help orient them with who you are. “If they’re you mum, call them ‘mum,’” says Hellner. “Identify yourself as ‘hi it’s John, your son.’”
She also recommends families bring in mementos from their relative’s past, such as familiar photos, keepsakes and music.
However, one thing that makes spending time with a loved one with dementia is their genes, she says.
“You watch one of your parents go through something, you’re going to be afraid that you’re going to be going through that, and that maybe your own children are going to be experiencing that, whatever the disease might be,” says Hellner.
Heredity is one risk factor some forms of dementia, but inheriting dementia is not guaranteed. There is research to suggest that keeping mentally and physically active throughout life active can help prevent or delay dementia.
McLaughlin says she is aware of the risk factors of dementia.
“You can see it coming at you,” she says. “I have it on both of my grandmother’s sides, both sides, and my dad is now dealing with memory issues… And both of [Sinclair’s] parents, particularly her mother, aged in this manner. You know, I better start learning Russian or something.”