| Before Memory Fades | ||||||||||
| By Zhang Jing-mei Translated by Tang Yau-yang | ||||||||||
The progression of dementia may be slowed if it is diagnosed and treated early. The Tzu Chi International Medical Association has been working to help identify those who may be at risk, and has offered workshops on memory preservation. Their noble goal is to help people retain their precious memory.
Alice Howland, the protagonist of the 2007 best-selling novel, Still Alice, was a cognitive psychology professor at Harvard University and a renowned expert in linguistics. One day while giving a lecture, Howland forgot the word “lexicon.” Soon after, she became disoriented while jogging near her home. The rest of the book follows the 50-year-old character as she was diagnosed with and struggled through her early-onset Alzheimer’s disease. The book, by Lisa Genova, was later adapted into a movie with the American actress Julianne Moore playing Alice. Moore won the 2015 Academy Award for Best Actress for her portrayal of the courageous woman. The film thrust the personal reality of Alzheimer’s disease to the forefront for audiences to see. Although Alice Howland was but a fictional character, she represents many real women and men from all walks and stations in life who suffer from this disease. Prominent and ordinary people alike have been victimized, from former American President Ronald Reagan and famous writer E.B. White to commoners of all stripes. The Taiwanese government, based on its 2013 census and a survey, pegged the prevalence of dementia—the most common type of which is Alzheimer’s disease—among its citizens to be one in a hundred. This is an issue that must be taken seriously. At the onset of dementia, many patients attribute their episodes of forgetfulness to aging and consider such incidences a normal part of getting old. Typically, patients and families become alerted to the true nature of the problem only when such forgetfulness begins to interfere with the patients’ daily activities. As a patient’s condition declines, symptoms grow beyond mere forgetfulness to include difficulties with language, disorientation, mood swings, loss of motivation, and failure to manage self-care. The care that is required for dementia patients 24 hours a day, 7 days a week, as well as the stress of watching their loved ones slowly decay, often plunges families into challenging physical and mental miseries.
Too late? There is no cure for most progressive dementias, including Alzheimer’s disease. But early diagnosis and intervention may impede the progression of the cognitive disorder, which can be roughly divided into mild cognitive impairment (MCI), early stage, middle stage, and late stage. For people with MCI, the symptoms of the disorder are just beginning to show but are not yet severe enough to affect their everyday ability to function. They usually see no need to seek medical help. However, more and more evidence has shown that about 10 to 15 percent of people with MCI evolve into early-stage dementia within a few short years. Thus, people with MCI are most in need of caring and knowledgeable people to look out for them and recognize the signs of illness before it is too late. Dalin Tzu Chi Hospital and the Tzu Chi International Medical Association (TIMA) are engaged in efforts to identify people who have MCI or are in the early stages of dementia in hopes of bringing about early intervention. Dalin Tzu Chi Hospital set up a dementia center in 2012. Hospital medical teams started visiting communities in 2013 to screen interested residents for very early-stage signs of dementia. More specifically, the teams interview residents using the AD8 Dementia Screening Interview in an effort to identify individuals in need of treatment and support. The teams have also expanded their reach southward in Taiwan. In 2014, they began joining forces with TIMA members in Kaohsiung and Pingtung to screen elderly volunteers at Tzu Chi recycling stations in those regions. Tsao Wen-long (曹汶龍), director of the dementia center, has established a community-based model of care for early-stage dementia patients. The model combines community resources and efforts by Tzu Chi volunteers to offer memory upkeep classes in many towns in Chiayi County, where the hospital is located. The TIMA branch in Kaohsiung, located to the south of Chiayi, has been involved in a similar initiative. Since 2013, it has trained volunteers in this regard, conducted dementia screening in communities, referred suspected patients to specialists, visited patients in their homes, conducted memory upkeep courses, and assisted communities to initiate their dementia programs. Hsu Chiu-tien (許秋田), director of the Clinical Psychology Center at Dalin Tzu Chi Hospital, said, “We should take action to seek out dementia patients instead of just sitting in our clinics waiting for them to show up.” He explained that if screening leads to an earlier diagnosis, a patient can benefit earlier from medical treatment and engagement in community activities and physical exercises. “Imagine the incredible good we can bring to patients and their families if we can help delay the onset of dementia by 10 or 20 years, say from age 65 to 75, or even 85.” Memory upkeep courses In 2016, the TIMA branch in Kaohsiung joined forces with Dalin Tzu Chi Hospital, Kaohsiung Chang Gung Memorial Hospital, and the National Chung Cheng University Department of Athletic Sports in offering courses to help dementia patients preserve their memory. One such course, consisting of nine classes that spanned March and April of 2016, was held at the Kaohsiung Jing Si Hall. On April 8, TIMA members escorted ten elderly people, averaging more than 70 years of age, to a Tzu Chi recycling station in Niaosong, Kaohsiung, for the first outdoor activity of the course—drumming. Volunteers at the station had prepared red bean pineapple soup and stir-fried king oyster mushrooms for the visitors. They had also cleared an area and set up ten drums. Sitting in front of a drum and holding drumsticks, the older folks probably felt like fish out of water. They were in a setting with which they had had no prior experience. Nobody knew what to do. But then, unexpectedly, somebody struck the first drumbeat. That was Zeng Tian-fu (曾添福, 79). Cheerfully beating his drum, he remarked, “This was how people used to play the drums during temple festivals when I was little.” His wife, Xu Wei-yun (許瑋芸), sitting beside him, chuckled. She was too slow to stop her husband from beating his drum. Zeng’s unexpected act nicely broke the ice and got the event off to a lively start. “All right, let’s get started,” said the young drum teacher, Xu Jia-zhen (許家禎), to the group. “Raise your hand and repeat these words after me, ‘A big elephant!’ Then hit the drum hard. Dong!” He taught everyone to beat out tempos slowly and then faster. His students did the best they could to follow his directives and copy his motions, beating sometimes on the drumhead and other times on the rim of the drum. Under Xu’s guidance, the old folks beat out the rhythm of a familiar nursery rhyme, “Tricycle.” Drumming was an entirely new experience for these elderly people, so they inevitably fell out of rhythm or missed a beat here and there. When they made mistakes, they smiled apologetically, like a first grader caught with his hand in a candy jar. But no matter the quality of their performance, everyone there gave them generous rounds of applause and cheered them on. Mr. Qiu, a mid-stage dementia sufferer, was accompanied by his wife and their children on this day. Counting the beats in earnest after the teacher, he forgot to beat the drum, his arms suspended in mid-air. His son Qiu Fang-jie (邱芳傑) quietly moved behind him, held his arms, and guided his hands to beat on the instrument. After a few strokes, the father, smiling all the while, got back in the rhythm and beat the drum with increasing accuracy. Fang-jie was glad to see his father have a good time, which he attributed to the friendly environment that the Tzu Chi volunteers had created. It was easy for people to relax there. The old man used to be a very capable dad for his children, but now he had to rely on them for his care. Fang-jie at first found it hard to accept this reversal of roles, but fortunately he and his family had been quick to adjust. His father was no longer his previous self, but they had to accept him the way he was, without attempting to change him. “Were it not for my dad’s dementia, I probably wouldn’t have been able to interact so intimately with him,” the son said. “He’s my dad. I feel nothing but joy and gratitude for being able to do anything for him.”
What will tomorrow bring? Mr. He, another participant, sat off to one side. A stroke 12 years ago had caused him to lose the use of his left arm, left leg, and left ear, as well as his command of speech. Sitting in front of a drum, he was expressionless and silent. Pretty soon, two volunteers cajoled him to take part. Each held one of his hands and moved them repeatedly up and down to the drum. Unable to resist the volunteers’ enthusiasm, the old man soon began drumming by himself. Sitting beside these three senior men—Zeng, Qiu, and He—were their wives, who had accompanied them through thick and thin over the years. When their husbands fell ill, they took care of them the best they could, but it was a task that often quite thoroughly sapped their strength. Therefore, it was a welcome respite for them to attend this drum event at the recycling station. They enjoyed these rare moments of relaxation as they drummed out light-hearted beats. Looking at the group of older people in front of him, Dr. Ye Tian-hao (葉添浩), a TIMA member, observed cheerfully, “Drumming is a rejuvenating activity. I’m so happy to see the bright smiles on these seniors’ faces.” Under the afternoon sun, everyone’s face beamed. In Still Alice, Alice Howland said, “My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.” The memory of a dementia patient will eventually fade away, but that is not necessarily a tragedy. As long as he or she can choose to enjoy and live every day fully, their life journeys will still be enriching and beautiful.
|
|
