By Max Wallack
It was a wonderful presentation, both sad and encouraging, at the same time. I strongly recommend that anyone involved in caregiving to dementia patients should make a point of seeing this film! It is a documentary about the positive affects the creative arts have on persons suffering Alzheimer’s and dementia.
In addition to viewing the film, I had the opportunity to benefit from the panel discussion which followed. The panelists, as listed on the website notice, were:
- Brandon Ally, PhD, Boston University School of Medicine, Assistant Professor of Neurology, Director of Neuropsychology Research, Center for Translational Cognitive Neuroscience, Bedford VAMC
- Meg Curtis, Innkeeper, caregiver to Alzheimer’s patient Skip Curtis featured in the film
- Robert Green, MD, MPH, Boston University School of Medicine, Professor of Neurology, Genetics and Epidemiology and Co-Director, Alzheimer's Disease Clinical & Research Program
- Berna Heubner, Co-Director and Producer of the Film, Founder and President, The Hilgos Foundation
- Robert Stern, PhD, Boston University School of Medicine, Associate Professor of Neurology and Co-Director, Alzheimer's Disease Clinical & Research Program
- John Zeisel, PhD, President and Co-Founder, Hearthstone Alzheimer Care, Ltd.; I'm Still Here Foundation
The challenge is to bring this success to human patients. So far, the medicines being developed will greatly slow down Alzheimer’s, but not cure it. That means people will live longer with the disease.
The speakers mentioned that the families of Alzheimer’s patients and even the patients themselves are afraid of their own limitations. Soon, their loved ones stop involving them in many experiences.
The speakers talked about the stigma of having Alzheimer’s. The families immediately see them as a “patient”. Many families come to physicians telling what the Alzheimer’s person “can’t” do. All speakers stressed the importance of allowing persons suffering from Alzheimer's “to do as many things as possible -- to let them do what they can do”. It is important to find out what the person can do and enjoys doing.
Many families have negative attitudes, feeling that the person is “no longer there”. It is important to realize that the person is always there. We need to help the Alzheimer’s person find things the person will enjoy, and they will become “more there.”
Examples of these things that were mentioned are cooking, baking, gardening, exercise, painting, music, even visiting circuses, zoos, and acrobatic performances. I feel Alzheimer's caregivers will be more successful if they can identify what interests the person suffering from Alzheimer's -- this is how you stand up to the disease.
In my great grandmother’s case, it was taking care of young children. She loved babies!
During her last few weeks of life, even when she was in a dementia facility, couldn’t speak, couldn’t swallow, and really seemed “gone”, Great grams brightened up when she saw a baby. She actually said how cute the baby was! On this occasion, a nurse's aide had brought her baby into work to show to her colleagues.
Great grams was also very upset when the baby was whisked into a back room, out of her site. She struggled to follow it, obviously “remembering” where they had taken the baby.
The film, “I Remember Better When I Paint”, began as a case study of Hilda, a 90 year old woman with Alzheimer’s who had been a successful painter. Hilda, now in a nursing facility, was apathetic and easily agitated. In an effort to get through to Hilda, one day her daughter asked her, “Mom, do you want to paint?” Hilda answered, “Yes, I remember better when I paint.” A connection had been made! Still, it took several months of being visited by her family and by art students before Hilda “came alive”. She became more focused when with her art materials. She breathed slower, was calmer, and she became more receptive to communication.
After a while, Hilda created a whole new family with the visiting art students, eventually producing 300 paintings while in the nursing facility. She also developed a better sense of reality, once saying, “Here comes the real one!” when her own daughter arrived for a visit.
Several other case studies were presented in the film. In every case, the value of the creative arts was astounding. A physician explained that the key to unlocking memories starts at finding new ways of getting to persons suffering from Alzheimer's. He said that the parietal lobe is only involved very late in Alzheimer’s disease. The parietal lobe gets stimulated by art. Previous information is still there for the Alzheimer’s person. What is needed is to open a new pathway to old information. Sometimes, art can do this.
The film and the physicians explained that creative arts are a doorway. Once the doorway is opened, worlds are opened. The Alzheimer’s person takes in color, forms, and shapes that are real and have meaning even in the nonverbal brain of a person with advanced Alzheimer’s.
In the film, one clinician told of how he frequently took people with mid to late stage Alzheimer’s to art museums. He was often asked there if they were “only early stage.” Sometimes, people didn’t believe the patients he brought had Alzheimer’s at all, because they were so engaged with the art.
The physicians present at the panel discussion said that one problem is that people still see arts and crafts as just a way to pass the time, and not as an essential treatment even though, in many cases, “ART WAS JUST AS EFFECTIVE AS DRUGS!” They stressed that art should not just be a topping on the care of these individuals; it should be a fundamental part of caring.
Less than 15% of people with Alzheimer’s are doing creative activities. Most facilities are too understaffed. They try to meet only basic federal standards. John Zeisel, President of the Hearthstone Facilities and the President of the “I’m Still Here Foundation,” was asked what facilities could do when they have a lack of funding. He said that creativity has to be a part of whatever the staff does. Creativity must be involved.
I learned that over 35 million people have Alzheimer’s. By 2050, over 100 million people will have Alzheimer’s. It is becoming an epidemic, as people are living longer. It was discussed whether it is important to prolong life if it’s a life not worth living. It was stressed that we need to not only extend life, but make sure it is a life worthwhile, with meaning and quality.
Someone asked why we would remember better when we paint. One answer was because there is emotion involved in art, and people remember better when there is emotion involved. Also, creative arts are able to use the brain as a whole.
One audience member said her family had funded an arts program for people with Alzheimer’s in Connecticut. She asked what she should look for to see if these programs were being successful. Mr. Zeisel said his facilities are being taught to measure engagement. They use questionnaires. They take movies of their patients, and they have engagement scales. The goal is to REPLACE aggression and apathy with a focus of attention, engagement, mood elevation, and improved memory.
I am very happy that I attended this presentation. Not only did I learn a great deal, but I came to believe in PuzzlesToRemember even more than ever before. Puzzles often deal with artistic subject matter. Puzzles certainly engage the people with Alzheimer’s. I have seen this for myself. Puzzles can elevate a person’s mood. Puzzles really can help!
Also see I Remember You
PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients. Puzzles To Remember has already distributed 12,646 puzzles to over 1298 Alzheimer’s caregiving facilities in all 50 states, plus Canada, Mexico, England, and Colombia.
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Original content Max Wallack, Alzheimer's Reading Room