慈濟傳播人文志業基金會
Freeze This Beautiful Moment
Grandma Jian, an elderly woman in her 80s with middle-stage dementia, often forgets things and people around her these days, but some memories seem to be intact in her mind. Here she sews with ease, probably like in the days when she taught sewing to many apprentices.

 

An Epidemic of Dementia

In Taiwan, one in twelve people 65 or older is afflicted with dementia. The prevalence of dementia jumps to one in five for those 80 years or older. Considering that Taiwan is projected to enter the ranks of “aged societies” by 2018—14 percent of its population will be at least 65 years of age then—dementia has become an issue for the whole of society to face.

Dalin Tzu Chi Hospital is doing something to lessen the impact of this disease.

A CT scan of the brain of a healthy person, left, and that of a dementia sufferer, right, which shows brain shrinkage.  Courtesy Dalin Tzu Chi Hospital

 

"I like this soup. Pack it up for me to take home,” you say to an eatery owner. A few moments later, however, you find yourself riding on a bus, confused as you look at the soup in your hand. You ask a fellow rider, “What is this? How did I get it?”

Your memory has become so short that it feels disconnected. As soon as you walk out your door or get into your car, you forget what you did just a moment ago. It eventually gets to the point that you can’t even write your own name....

Unending delusion and forgetfulness

“When I’m at work, Mom sometimes cooks a big pot of rice at home, only to follow it with two more big pots. She even hides them sometimes. By the time we find out, the rice has spoiled and it stinks,” said Huang Yan-fei (黃燕飛) of Beigang in Yunlin County, southern Taiwan. Her mother suffers from middle-stage dementia.

Despite her illness, she appears perfectly normal when out and about or interacting with others. It is not immediately apparent to casual observers that she suffers from memory loss. Only her family, being so close to her, can detect that something is wrong.

Talking about her mother’s memory loss, Huang remarked that at first she just felt curious why her mom kept asking her if she had eaten yet or kept whispering to her that so-and-so seemed to have stolen some money from her. Those accusations, when examined closely, weren’t true at all. Gradually, her mom even began to talk to herself or call her family bad names.

Huang said with an air of resignation that once a cousin angrily questioned why she had not given food to her mother. Her mother had complained to the cousin that she had not had anything to eat for three days and that she was about to starve to death.

The truth of the matter was a different story. In fact, Huang’s mother often forgot that she had eaten and would as a result eat without restraint. To prevent her from overeating, Huang and others in the family had had to put food away after meals.

One time, her mother even fed their three dogs more than 20 times in a day, almost stuffing them to death.

“Fortunately, because she worries that people might break into our house and steal things from us, she doesn’t wander about,” Huang said. It’s a “silver lining” of her mom’s delusions; at least her family doesn’t have to worry about her wandering away and getting lost.

What is happening to this family is not an isolated case. They may not be fully representative of all families with dementia patients, but this does provide a glimpse into what it is like to live with people who suffer such a disease.

 

Tsao Wen-long (right) chats warmly with a patient and a family member in his clinic.

 

An on-going epidemic

Dementia has become a familiar term in today’s world. Most people can name off the top of their heads some common symptoms of the disease, such as a tendency to get lost or forget the current time. According to the World Alzheimer Report 2016, published by Alzheimer’s Disease International, 47 million people worldwide live with dementia today. That number is projected to increase to more than 131 million by 2050, as populations age. If the projection holds, more people will live with dementia by 2050 than the total population of Japan today, 127 million.

Beyond the sheer magnitude of these numbers, what is even more worrisome is that there is still no cure for dementia. Drug therapies offer only limited benefit. Cognitive and behavioral interventions may help mitigate the effects of the disease, and exercise programs may also be beneficial, but there is no cure.

Dementia is not a direct cause of death, but it degrades the sufferer’s quality of life, immune system, and motor function, leading indirectly to death. Alzheimer’s disease, the most common form of dementia, has been listed as the sixth leading cause of death in the United States.

The average life expectancy of Alzheimer’s disease patients following diagnosis is approximately eight to ten years. During this time it is the goal of caregivers to blunt the impact of the disease, postpone its onslaught, and retain the functioning of the patients until as close to the end of life as possible.

 

Volunteers lead participants of a memory upkeep class in physical exercise.

 

The dementia center

Chiayi and Yunlin counties, in southern Taiwan, lead the nation in having the oldest populations. Chiayi is in the top spot, with 17 percent of its citizens 65 years or older. According to statistics compiled by Dalin Tzu Chi Hospital, located in Chiayi County, 40 percent of its patients are 65 or older. The implication is clear: the more older people, the more potential dementia patients.

Dr. Tsao Wen-long (曹汶龍) took the helm at the Department of Neurology of the Dalin hospital in 2011. He noticed that many older patients at his clinic were afflicted with dementia, and that many didn’t come to seek help until their diseases were very advanced and their caregivers were at their wits’ end.

Tsao pointed out that there is a difference between dementia and aging. With aging, a person may forget things sometimes but can usually recall them later. With dementia, however, a person can forget completely what he or she has said or done—with no recall whatsoever—potentially to the point of making it difficult for them to carry on a conversation with others. In addition to a decline in memory, dementia patients also suffer from a deterioration of cognitive, visual-spatial, and motor functions, as well as a decreased ability to interact with others. Some dementia sufferers may also appear to undergo a total personality makeover.

Even though there is currently no cure for dementia, it can be detected early. Recognizing and treating the disease early may improve a patient’s quality of life. In Taiwan, once diagnosed, dementia sufferers can request medicines from the national health insurance program.

With the large senior population in the Chiayi area, Tsao knew that his hospital had to deal with dementia head-on. There was no avoiding it. A dementia center and a dedicated clinic were established at the hospital in September 2012. Initial staff members included Dr. Tsao, case manager Liu Qiu-man (劉秋滿), and clinical psychologist Hsu Chiu-tien (許秋田).

To identify people at risk of dementia as early as possible, Tsao and Hsu often visited local government officials to solicit support and assistance so that their hospital could conduct dementia screening at community events.

The center has also worked closely with Tzu Chi volunteers. Together, they have held training classes in Yunlin, Chiayi, Tainan, and Kaohsiung to coach volunteers on how to fill out AD8 Dementia Screening Interview forms. With this knowledge, volunteers can conduct basic dementia screening at community activities, thus facilitating early detection and treatment.

As a result of Tsao’s advocacy, the Chiayi County Health Department in 2013 incorporated the AD8 Dementia Screening Interview as one of the regular checkup items at the free physical exams the department provides for county residents.

Tsao’s efforts extended even further. He pointed out that in the past it typically took a patient at least five visits to a hospital before he or she could be prescribed the needed pharmaceuticals. These visits included the initial clinic appointment, followed by appointments for a cognition test by a clinical psychologist, a CT scan, and blood tests. After all these visits had been finished, an application could be made to the national health insurance for dementia drugs. It could take several months before the entire procedure ran its course.

That cumbersome and lengthy process was a deterrent to dementia sufferers seeking medical help, especially those whose symptoms were not severe. To improve this situation, the dementia center revamped and streamlined this process. Now when its outreach team conducts screening in communities, the team includes a clinical psychologist, who stands ready to evaluate the patients that screeners suspect might be afflicted with dementia. If the evaluation confirms their suspicion, home visits ensue to bring the family up to speed, and an appointment with the dementia center is made for an initial clinical visit.

During that initial visit, because a lot of information has already been gathered by this time, the patient receives a CT scan and laboratory tests. Usually, the patient can receive medicine for the dementia as early as the second clinical visit.

The entire process has been greatly streamlined, cutting out much of the patients’ travel, wait time, frustration, and hesitancy to continue through with medical care.

 

Zhang Yi-rong, a social worker at the dementia center, visits the homes of two patients every Thursday afternoon. Each visit takes a long time. Even when it is a return visit, it still feels very much like a first visit because the patient often has difficulty remembering things from before.

 
 

Personal touch

The center also offers organized support groups to stand behind dementia patients and their families. Members of the support groups include doctors, nurses, nutritionists, physical therapists, social workers, and volunteers.

Case Manager Liu Qiu-man has been with the center since it was first established. She used to be an inpatient nurse and believed that she was well versed in elderly care. She anticipated that changing her focus to the care of dementia patients would not be a problem. However, once she joined the field, she experienced a rude awakening. Take, for example, the issue of a dementia patient who refused to go to bed at night. When a patient’s family asked her what to do regarding this issue, Liu, still new in this field, instinctively posed a question back to them: “Does he sleep too much during the day?” She only found out later that such behavior is a symptom that shows up in the progression of dementia, a symptom that often also keeps a patient’s family up at night, draining their energy and making them exhausted.

“A good way to handle this issue is to increase the patient’s physical activities during the day, along with using the proper medicine.” Now Liu, having learned many aspects of dementia care, can easily answer most questions from families. Furthermore, she knows that listening to them with empathy can prove to be even more helpful. Dementia care is much more than just giving drugs to patients and proper answers to their families. Listening to weary family members pour out their frustrations helps them decompress. Caregivers need the relief a sympathetic listener provides.

The dementia center also sends its staffers to visit patients at home. It is a service that requires a commitment of a tremendous amount of time.

Zhang Yi-rong (張益榕), a social worker at the center, makes such house calls on Thursday afternoons. She usually visits two families: one new, one old. New patients are usually referrals from neighbors, local government leaders, or the center’s outreach screening service. During these visits, she checks if they want further medical help or would like to join a memory upkeep class. For existing patients, she checks on their situations to find out if there are any difficulties with which they and their families need assistance.

The children of many older Taiwanese citizens live away from their hometowns, which makes for a challenging situation when those with dementia can no longer care for themselves. In place of their own family members, many patients live with and are cared for by hired caregivers from other Asian countries, such as the Philippines, Indonesia, and Vietnam. Home visits to these patients are particularly important and valuable because there often exists a language barrier between the patients and their foreign caregivers.

Zhang pointed out that home visits have helped her see the real needs of patients or things of note. One time she visited an old woman who was in the middle stage of the disease. Talking with her, Zhang found out that she had been a master seamstress in her younger days. Soon the woman—drifting back to the proud days of her past—thought Zhang was a customer in her shop. Zhang played along and kept the conversation in that vein. But eventually this “dream” skidded to a stop when the old woman set out to draw a pattern but found that she couldn’t.

“I once wondered about the value of my work—I doubted that dementia patients would ever find hope,” Zhang said. But now she has realized that though she cannot really change the fact that they will keep losing memory, she can keep giving them love.

 

A clinical psychologist carefully assesses the condition of a participant in a corner of a memory upkeep class.

A wider care network

The Dalin hospital dementia center offers its services through clinics, community screenings, support groups, and publications, but the most outstanding results they have seen are through their memory upkeep workshops.

In 2014, to improve care for the senior population in Taiwan, the Ministry of Health and Welfare set out to select 22 locations throughout Taiwan that would receive government support to provide care for dementia sufferers. The dementia center at Dalin Tzu Chi Hospital submitted its bid, as did many other hospitals in the county, and won the only slot allotted for Chiayi County.

With the government support, the center started a memory upkeep workshop at Youdong Village in the town of Xikou. It has since offered two classes every week at this location, providing cognition training and physical fitness courses to hopefully help slow memory loss for the participants. Just one year after it began, thanks to the hard work of all those involved, the government rated the performance of the workshop “superior.”

From this initial location, the dementia center has expanded its services to other places in southern Taiwan: four more locations in Chiayi County, one in Yunlin County, two in Tainan City, and two in Kaohsiung City—a total of ten locations now. Some of these locations are at Tzu Chi offices.

Each location enrolls just over 20 participants on average, so more than 200 dementia sufferers are being served across the ten locations. Behind those people, over 200 families are receiving some support and a little breathing room through the workshops.

The mother of Huang Yan-fei, mentioned at the beginning of this article, is one of the participants. Huang said that at first she had to cajole her mother into going to the classes, but now she willingly and cheerfully attends them. She remarked that the biggest change in her mother is that she has begun to smile again. Huang also declared that now she and her family are clearer on the progression of the disease and know how to better handle a situation, such as new changes in her mother’s behavior. They have even been able to anticipate what is to come and attune themselves to it accordingly.

A social worker from the center talks to seniors, who are easily her grandparents’ age, to help stimulate their brains.

A team on the go

The team from the dementia center is busy from Monday through Saturday. They only rest on Sundays.

When the memory upkeep courses first got started in Kaohsiung, Dr. Tsao and clinical psychologist Hsu Chiu-tien often drove there, an 80-mile trip, to conduct training classes for volunteers. After the classes, the two of them would then drive back, even when they were very weary. At times, they would doze off while on the road. It was just not the best time for them to drive. But they had simply braved it and eventually helped the new classes get off to a good start.

Fortunately the dementia center has been able to hire more help with funding from the Tzu Chi Foundation. In 2016, a social worker, a clinical psychologist, a nurse, an administrative staffer, and—this must be music to the ears of Tsao and Hsu—a driver came on board. The professional staffers can now concentrate on what they do best for dementia sufferers and caregivers and leave the driving to a pro who will take them home safely, however exhausted they may be at the end of a long day.

A senior, with a book bag slung across her shoulder, on her way to a memory upkeep class.

Since their establishment, the ten workshops have each evolved and developed characteristics all their own, shaped not by the center alone, but by the combined efforts of the center and the local volunteer teams. Tsao hopes to help each workshop keep improving so that each location will be a haven for patients and their families. He wants all of them to take home from the classes fond memories filled with laughter.

 

Mom, I’m Your Son

Her memory keeps declining, to the point that she often confuses her son with her late husband or her brother. Her mind might be muddled in her battle with dementia, but her son refuses to throw up his hands in defeat. Instead, he is doing his best to help her live in the happiness of the moment.

After he got up this morning, Xu Dong-liang (許棟樑) quietly put his mom’s clothes and her book bag for her memory upkeep class in her room. He reminded her of the class, and he told her to remember to take the bus in front of their home to get there. When the time had come for her to go and she was still sitting at home, he said to her, “It’s eight already. Aren’t you going somewhere? Or would you prefer to stay home today?” When his mom heard that, she shouldered her book bag and walked out the door. There was no way she was going to miss the class. She loves going there.

Xu’s mother is now 91 years old. Xu and his family first suspected something was wrong with her not long after Xu’s younger brother died in an accident six years ago. They began to notice that she was becoming more and more irrational, often saying things that didn’t make sense. Originally a kind, mild person, she became hot-tempered and quick to find fault with others. She even quarreled with fellow passengers on a bus. She would often accuse others of stealing her stuff, but when Xu and others in the family tried to confirm her allegations, they discovered that they were completely unfounded.

“At first, we thought it was just normal cognitive decline related to aging,” Xu recalled. He took his mom to a geriatric physician, thinking a doctor might help her. The doctor put her on medicine to ease the deterioration of her condition, but just a few days after she started taking the medicine, her feet became badly swollen, forcing her off the meds. Xu left the matter alone for a while until a relative suggested that she might be suffering from dementia and advised him to take her to a neurologist for an assessment. Xu took his mom to Dalin Tzu Chi Hospital, where she was diagnosed with a mild case of dementia.

“Are they here yet?” With a book bag slung across her shoulder, Xu Dong-liang’s mother asks him every few minutes why the bus that will take her to the memory upkeep class has not arrived yet.


After learning that his mom was ill, Xu began to take part in support groups and lectures for dementia patients and their families, hoping to learn how to help his mom get better. But the more he learned about the disease, the more he realized that his mom’s condition would only get worse—there was no stopping the decline.

To care for her, he took her to live with him and his family in Taipei, northern Taiwan. But even though his wife and children were fine with this arrangement, his mom had a hard time getting acclimated to the new environment. She even got lost in his house, on her way from her room to the bathroom. Three days later, after it became apparent things weren’t working out, Xu decided to let her move back to her place in Yunlin, southern Taiwan.

Feeling uneasy about her living alone, Xu began to split his time between Taipei and Yunlin. After doing this for some time, he noticed that his mom wasn’t eating properly, which resulted in malnutrition. Eventually, he decided to leave his family and job behind in Taipei and move in with his mom to take care of her. That was six years ago. His wife and kids complained about it at first, but they have since come to respect and accept his decision.

Xu admits that at first it was difficult living with his mom day and night. He didn’t know her behavior patterns very well, and when she lost her temper at him he didn’t know how to deal with it. He could only bottle up his pain. Sometimes he would lose his temper too and shout back at her: “I’m just a human being after all. It’s hard to always hang onto my emotions.”

Now, after having lived with her for six years, he has become much more adept at handling a volatile situation. If they get into an argument, he cooks up an excuse to leave the scene first, such as saying that he has to go out to buy something. When he returns 30 minutes later, chances are his mom has forgotten all about the argument.

On this day, a lecturer brought a ball-hitting toy to the memory upkeep class to help participants improve their hand-eye coordination. With everyone’s encouragement, Xu’s mom (in yellow school T-shirt) gave it a try. She finally hit the ball on the third try, but the entire toy flew away along with the ball. It left everyone in stitches.

 

Cajoling

Three years ago, Xu signed his mom up for a memory upkeep class offered by the dementia center at Dalin Tzu Chi Hospital. Since then, his mom has had two more happy days each week, and he can enjoy some free time for himself too. At times, instead of using that free time to take care of some business, he joins the support group on the floor below his mom’s class. There he and other family members of dementia patients share their frustrations and learn from each other how to provide better care for their loved ones.

It wasn’t easy to get his mom to join the class at first. After all, she was illiterate (like many women of her generation in Taiwan) and well advanced in age. When he told her about the class, she responded, “A class?! At my age?” and plainly refused to go.

It was a stroke of luck that the class was scheduled to start just before Senior Citizens’ Day. Xu tricked his mom into going by telling her that an event was being held in honor of the day, and that older people who attended the event would receive a monetary gift. He took money out of his own pocket and prepared the gift for his mom.

Just like that, he succeeded in getting his mom to go to the first session of the class. However, they arrived too early and then had to listen to a government official deliver an opening speech for the class. His mom was bored. Just ten minutes after she sat down she told Xu she wanted to go home. She even left the class on her own and walked out to the street. Xu had no choice but to drive her home. The first session thus ended in failure.

Xu wondered how, with that bad experience, he would be able to get his mom to attend the second session two days later. Fortunately for him, his mom soon forgot all about that bad experience, and Xu was able to get her to the second session by using the same trick—promising her she would receive a gift. This time he was sure to time it so that the session would start as soon as they arrived.

That second session went well. And after that, the third and fourth. Sometimes his mom remembered to get the money from him, and sometimes she didn’t. As time went by, she stopped mentioning it altogether. She was having a blast at the class and she would attend it with or without a gift.

Her memory continues to decline and she often confuses Xu with her late husband or her brother. It makes Xu sad sometimes when she does this, but he has learned to be more positive about it. His mission now is to make his mom happy. When she suddenly recalls the passing of his younger brother and feels sad, he says to her, “What are you talking about? He’s alive and well and working in Taipei. He came home for a visit just yesterday. Have you forgotten about it?” He does that to prevent his mom from dwelling on sad memories.

“I don’t expect the class to bring about any marked improvements in her. It would be enough for me if she likes going to the class and has a good time there.” Xu said that since he learned about his mom’s dementia, he has become a lot more tolerant and patient with her. She is ill after all, and it won’t do to judge her behavior by normal standards.

Though he has to humor his mom in many things and often feels like he is dealing with a child, he has come to take it as a part of his life. He is prepared for what may lie ahead.

 

My Grandpa Remembers My Name

He volunteered to return to the countryside to take care of his grandfather, who had been diagnosed with dementia.

 

 

Wu and his grandpa ride around on a tandem bicycle.

If you learned that your grandpa had been diagnosed with dementia, what would you do? Wu Yao-zong (吳耀宗), 30, encountered just such a situation a few years ago…and he made a decision that surprised everyone.

Before he went to elementary school, Wu was cared for by his grandpa, who lives in a rural community in Yunlin, southern Taiwan. Wu only went to live with his parents in northern Taiwan when he was of school age, so he had a strong bond with his grandpa. About six years ago, his grandpa often forgot his way home, and he was diagnosed with dementia. As his condition continued to deteriorate, his children, all of whom lived in northern Taiwan, decided to let him live with them in turns so they could take care of him.

Wu went on-line to look up information about the disease and found that a constant change of environment is bad for dementia patients. In order to let his grandpa stay in his familiar environment, Wu volunteered to quit his job in northern Taiwan, move back to Yunlin, get a new job, and take care of his grandpa.

“My dad was against it at first,” Wu said. “We didn’t agree on what is best for a dementia patient.” But his dad surrendered to his son’s will in the end.

Wu moved back in with his grandpa and began looking after him, but he soon ran into challenges. The old man’s kidneys didn’t function properly, and so his legs often became swollen. When that happened, Wu was blamed for not taking good care of him. Neighbors liked to put in their two cents too. Some of them even suggested that he seek divine help, such as having a Taoist ritual performed on his grandpa to have his scattered spirit made whole, or letting the old man drink some magical water supposed to have been blessed by the gods.

At first Wu, having received a pharmaceutical education, found such suggestions unbelievable, but he also knew that those neighbors meant well and were trying to help. If it wouldn’t do his grandpa any harm, he would try out a method that they suggested.

His grandfather was in mid-stage dementia. In the beginning Wu enforced a strict regimen on him. He would prescribe a set amount of daily exercise for him and insist that he eat certain foods. This, however, resulted in tension between grandfather and grandson, so the younger had to adjust his mindset and the way he cared for his grandpa.

In 2016, Wu learned that the dementia center at Dalin Tzu Chi Hospital had started a memory upkeep class in a nearby community. He decided to sign his grandpa up and take him there.

Wu soon noticed the positive effect the class had on his grandpa. “He really enjoys it,” Wu commented. While the medicine his grandpa had taken didn’t seem to have much effect, the class was a different story. His grandpa rarely said a word at home, but in the class he had no problem opening his mouth. He would also willingly follow the lecturer in doing physical movements. Wu was surprised. In the class he himself also learned how to better care for his grandpa. Since the class was such a success, he signed his grandpa up for a similar class in another community. Now in addition to the original class each Friday, he takes his grandpa to the other class every Wednesday.

At home, he massages his grandpa with essential oils. He also makes sure he gets enough physical exercise. He starts exercising with his grandpa at seven in the morning on those days when he has to work the night shift. With their arms linked together, they walk around the courtyard, or they play catch, or they water plants. Wu even bought a four-wheel tandem bicycle on which he and his grandpa can ride around for some exercise while enjoying the scenery along the way. When the old man gets enough physical activity during the day, he falls asleep easier and doesn’t pester Wu to go out at night.

His grandpa moves slowly, but Wu is always patient with him. The two of them have, as a result, grown even closer than before. What makes Wu happiest is this: His grandpa used to have to think a long time before he could call out his name, but now he always remembers his name. The grandfather’s blood pressure, blood sugar, and blood lipid levels have also returned to normal under his grandson’s care. Wu even discovered his grandpa’s talent for singing. Family members have been surprised when they visit and hear the old man belting out a song.

Wu knows there are many unknowns on the path ahead, but he has learned not to dwell on what he has no control over. He will just continue to do his best to help his grandpa live happily each day.

In the memory upkeep class, people care for one another like family

 

Spring 2017