慈濟傳播人文志業基金會
Aging Well Through Community-Based Dementia Care -- Tsao Wen-long, M.D.

Good morning, everyone,” Dr. Tsao Wen-long (曹汶龍) said warmly, smiling and waving in his white doctor’s gown. He was greeting some elderly people and their caretakers, such as family members, who were gathered for a memory upkeep class. The old folks had lost some of their memory faculty, and they were gathered for this class that Tsao helps manage.

Tsao’s colleagues, patients, and their families call him Papa Tsao. At age 71, he blends in well with the elderly people in the class, whether he is chatting or playing cards with them. Strangers might even mistake him for a student in the class if it weren’t for his white coat.

Dr. Tsao heads the Department of Neurology at Dalin Tzu Chi Hospital, southern Taiwan. He is also the director of the Dementia Center at the hospital. “I’ve seen patients for 46 years,” he said. “I’ve grown tired of treating diseases per se. I no longer enjoy finding the root cause of an illness. However, I’ve grown to love seeing patients—the human beings—and learning how they feel.”

He has scaled back his clinical duties, usually seeing patients at the Dalin hospital only once a week, on Tuesday mornings. He dedicates the rest of his working hours to people in communities.

 

Dr. Tsao could have retired twice had he so chosen, but he opted to keep working. Though he is now over 70, he still finds satisfaction in helping elderly people live more happily.

Community-based care

The Dementia Center at Dalin Tzu Chi Hospital was selected by Taiwan’s Ministry of Health and Welfare in August 2017 as one of 20 centers around Taiwan for community-based care for dementia patients. The Dementia Center currently serves seven care locations in Chiayi, Yunlin, Changhua, and Tainan. Each location is unique. For example, some focus on families banding together to provide support for one another, while others offer classes to help with memory upkeep.

Despite their differences, these locations share one common trait: They are staffed mainly by volunteers. That makes Tsao’s role as a provider of professional medical assistance especially important. He visits each care location several times a month. He screens people who have been identified as potentially having dementia or related conditions. He goes with his team to visit dementia sufferers at their homes. He offers encouragement and moral support to family members who bear the brunt of caring for their loved ones whose memory is deteriorating. He also regularly teaches volunteers information about dementia-related care.

These visits keep Tsao busy. “I just got back from such a visit,” he said, “and immediately afterwards I have patients to see [at my hospital clinic]. Naturally I feel a bit tired, but that doesn’t bother me because I feel I’m doing very meaningful work.”

“Meaningful” means different things to different people. To Tsao, the smiles on the faces of dementia patients and their families fill his endeavors with meaning. He is not alone in these feelings—all his colleagues feel the same way. Smiles like these fill Tsao and his team with purpose and propel them to keep doing their best.

 

 

Though dementia is currently incurable, the degeneration of functions in dementia patients might be slowed by doing exercises or other activities.

An old man himself

Dr. Tsao is himself getting on in years. He is quick to point out that he’d be lying if he said his workload doesn’t make him physically tired. But when he feels tired, he just takes a break and then resumes working.

At 71, he is, in his own words, “a younger old man,” meaning one between 65 and 75 years old. Such persons are generally doing okay, both mentally and physically. They can still drive and don’t have to visit the hospital too often.

He recalled that soon after he entered this stage of life, he noticed that his lower back was sometimes rigid and less flexible than in the past. Then he began to experience numbness in his legs. Sometimes he even found himself unable to walk, as if his legs had been tied together. As a seasoned neurologist, he knew that something was wrong with his nerves.

He had surgery to address that issue in 2016. Now with two steel plates and four steel pins in his lower back, he can’t even bend down. Though he wears a back brace and needs help to get in and out of a car, he views that as just a minor inconvenience. He can live with his limitations, and at least they do not impede his work. Plus, he has learned to listen to his body. When he has pain in his back, he knows that he’s moved around too much and that it’s time for him to get a little rest.

Tsao plays toss-and-catch with older people at a care location in Chailinjiao, Xikou, Chiayi. It is a very old game that people in the group likely played when they were children.

A little history

Tsao grew up in a military dependents’ village in Pingtung, southern Taiwan. He graduated in 1977 from the National Defense Medical Center, a military medical school in Taipei. Afterwards, he wanted to learn the latest medical techniques at Tri-Service General Hospital, a military hospital. To win the only resident vacancy in the hospital’s internal medicine department, he signed a contract with Tri-Service that committed him to working at the hospital for 22 years.

Due to Tsao’s superior performance as a resident physician, the hospital administration chose him to help establish a service in neurology. To prepare him for that, the hospital sent him during his fourth year as a resident to study neurology at the University of London. That was in 1979.

He returned to Taiwan in 1980 after his study in London. The following year, he assumed the directorship of the department of neurology at the hospital—a department that he would build up from scratch.

The long duration of the contract that he signed with the hospital had been stipulated by the government, but in 1996 the government repealed that regulation, releasing Tsao and many others from their long-term contracts. He could have retired at that time if he had wanted to, but he was not ready to stop working yet.

At the invitation of a former student who was working at Hualien Tzu Chi Hospital, eastern Taiwan, Tsao visited Master Cheng Yen in 1996. Touched by how the Master’s persevering spirit had enabled her to overcome untold challenges in establishing the hospital in Hualien, Tsao decided to join as the director of the neurology department. His relocation from Taipei to Hualien was welcome news in a region that suffered from insufficient medical care, to say nothing of neurological medicine. Tsao also began traveling to Dalin Tzu Chi Hospital after it was established in 2000 to help out when it was short on neurologists.

As the years passed and he got older, he began to focus more on teaching and visiting needy patients in the countryside. He was thinking about passing the baton, and he began to plan for life after retirement, including spending more time with his own parents.

But in 2011, Dalin Tzu Chi Hospital was again short on neurologists. Like a crisis first responder, Tsao went to Dalin to fill in. He knew that the neurological services at Hualien Tzu Chi Hospital were running smoothly and that Dalin could really use his service, so after filling in for a while, he accepted an offer to head the neurology department at the Dalin hospital. When a dementia center was established at the hospital in September 2012, Tsao took the helm there too.

At this venue in Xikou, Chiayi, about ten families have banded together for the care of their loved ones who suffer from dementia. They meet two days a week. Together, they tend a vegetable garden, cook lunch, and offer care and support to one another. The venue was provided by a participating family.

From hospital to communities

Through his years in clinical services, Tsao had witnessed that pharmaceuticals could not solve all the problems faced by dementia patients and their families. After the dementia center was established, he started organizing regular get-togethers for patients and their families so that they could offer support to one another.

Then he took part in a three-year program sponsored by the Ministry of Health and Welfare for community-based dementia care. That experience convinced him that community-based care offered great help for these patients and was worth implementing for the long haul. As a result, he began working with community development associations and Tzu Chi offices to set up care locations for dementia sufferers.

In July 2017, the government identified 20 centers throughout Taiwan for community-based dementia care. The Dementia Center at Dalin Tzu Chi Hospital was selected as one of them. It is a model of care that aims to improve the quality of life for dementia sufferers and their families. The government model is completely in line with what Tsao has been doing.

Tsao pointed out that the establishment of community care locations for dementia sufferers is not so much to alleviate a patient’s symptoms as to provide an environment to make them happy. The mere thought of such an environment makes a patient smile.

He provided an example of what he meant: An elderly female patient used to spend her days sitting idly at home. When her family first started bringing her to a care location to attend a memory upkeep class, she strongly resisted. But she soon began to enjoy it and started to smile more.

One day she had a fall at home. After treatment, she was kept at home to rest, but she bugged her family to take her to the memory upkeep class. There, she joined her classmates in whatever they were doing. When they stood up to exercise, she did too, even though the steel pins in her body made it hard for her to stand up. The class made her forget her injuries, and her eager participation in class activities helped her recover more rapidly. Even though she occasionally dozed off in class, she did so with a smile.

The woman passed away three years after she started coming to the care location. “The most beautiful memories we have of her over those three years were her smiles,” Tsao recalled, adding that it warmed their hearts to know that she was happy in the final years of her life.

He also pointed out that the woman was not the only person coming to a care location who left this world with a smile. He knew of several others like her. Their families all told him that their loved ones had passed the final phase of their life very peacefully and that they had together created many unforgettable memories at a care location.

 

This location in Chailinjiao, Xikou, Chiayi, functions as a community center and provides local elderly people with lunch and dinner. It is also in the dementia care program.

False dementia

False dementia may sometimes be confused with the real thing. A person displaying symptoms of the disease may not necessarily be a real sufferer. Other factors may have brought about the symptoms.

Tsao told a story about a retired school principal that illustrated this phenomenon. The principal came to his first memory upkeep class in a wheelchair. A female foreign helper was at that time taking care of his every need. He didn’t even need to lift a finger to bring food from the bowl to his mouth; he needed only to open his mouth as she spooned the food in. He did not need—or was deprived of the opportunity—to move much at all.

But after a few classes, he refused to be fed again, opting instead to feed himself. He had seen his classmates all around him, people much like himself, eat their meals themselves and he wanted to be like them.

Some time later, he even walked into class instead of being wheeled in. Only then did his family realize that he was capable of doing things that they had thought he couldn’t. Out of a desire to help, they or the helper had performed those tasks for him. But they had put him in an environment where he had little to no opportunity to do things for himself. In essence, that environment had made him useless.

Tsao pointed out that if people stop performing a function for an extended period, they will be even less able to do it. Therefore, staying active is the way to a better old age. On that premise, creating an environment where the elderly can remain active will be very helpful. 

This location in Chailinjiao, Xikou, Chiayi, functions as a community center and provides local elderly people with lunch and dinner. It is also in the dementia care program.

 Young again

People are increasingly living into their 80s or 90s, but what are they doing at those ages? What is the meaning of life when you’ve become so old? Tsao believes that even old people need to keep busy. He brought up the idea of the “age treasury” that Master Cheng Yen recently developed. An age treasury is like an imaginary safe into which older people can deposit 50 years of their age, leaving themselves that many years younger at heart. Why did Master Cheng Yen think of such an idea? Since many Tzu Chi volunteers have grown old, it is a way of getting older people to get out of their homes to volunteer.

“Take me for example,” Tsao said. “Taking 50 years away makes me a twenty-something. Of course, I don’t really have the stamina of a 20-year-old, but I can take on a young person’s mindset. With the wisdom and experience of a 70-year-old and the mindset of a 20-year-old, I can perk myself up to march ahead for another 50 years.”

With this mindset, one may take a very different path forward. A broader horizon in one’s outlook, even if only imaginary, can rekindle one’s desire to lead an active life and make oneself useful to others. Older people may therefore become busy people. They may even cut down on their leisure activities in order to accommodate their new passions.

Tsao believes that two things are indispensable for keeping elderly people active: One is a mental reset, such as an age treasury, and the other is group (environmental) support.

For example, how can you motivate an older person to continue to volunteer at a recycling station? If an older person alone can almost, but not quite completely, finish a task he used to complete on his own, some other volunteer at the station can work alongside the older person to bridge the gap and complete the task together. That way, the older person gets the satisfaction of accomplishment and a sense of usefulness, and he can proudly say, “I’m 30, and I’m a recycling volunteer.” 

Tsao spends time after work with his mother, who suffers from dementia. He humors her as much as possible to make her happy.

 Reinvigoration

“Reinvigorate yourself,” said Tsao. “Find how you can be useful and go where you’re needed. When you choose to stay home and watch TV, you’re cutting yourself out of opportunities to be needed.”

Tsao is thankful that he is a physician because the profession does not mandate retirement at a certain age, such as 65 for professors or judges in Taiwan. Many of these, he said, have difficulty adjusting to life in retirement, and some even end up closing themselves off from the outside world.

However, now that he is in his 70s, he knows that he also needs to hit the mental reset and modify his path forward. For example, if he continued to serve as a typical neurologist, he would need to carry out clinical duties or other commitments for longer periods of time. Such demands might not sit right with another physician his age. He is no longer young, and he must reorient his thinking. Therefore, he chose to switch to community-based dementia care. Though circumstances played a big part in leading him to that path, dementia care was something that he had always wanted to do anyway.

He commented with a smile that such a switch has meant a reduction of clinical duty and hence a big drop in income for him, but he doesn’t mind that. He has found that once you think outside of the income box, your world becomes wider. Though he has seen fewer patients at the hospital, he has helped many more in communities. They all need him and treat him like their own family, and that gives him stamina to keep going.

“I’ll be quite content even if I don’t wake up tomorrow,” he said. “My children are grown, my wife knows how to take care of herself, and my siblings can take care of my mother. I can leave at any time. But if I wake up tomorrow and feel fine, I’ll continue to make myself useful. I’ll go where I’m needed.”

September 2018