Alzheimer's Disease: Insights and Needs of a Caregiver

Interviweing Mrs KAO Wong May Wan Gwen

Alzheimer's disease, a progressive neurodegenerative condition, exerts a profound impact not only on patients but also on those who care for them. Caring for someone with Alzheimer's disease is a multifaceted and emotionally demanding journey. As the wife of Nobel Laureate Professor Charles Kao, Mrs Gwen Kao shared her unique experiences and insights in caring for Professor Kao through his battle with Alzheimer's disease. As the co-founder and chairperson of the Charles K. Kao Foundation for Alzheimer's Disease, she also shed light on how the community and aspiring healthcare professionals could support Alzheimer's patients and caregivers in their journey in the interview.

Caring for a Loved One with Alzheimer's Disease

Professor Kao was diagnosed with Alzheimer's disease in 2002. "When I was looking after my husband, those were the days when no one knew much about Alzheimer's disease. It was one step forward, two steps back," Mrs Kao recalled. She suspected Professor Kao might have Alzheimer's after learning about former US President Ronald Reagan's public announcement of his Alzheimer's disease diagnosis.

In the initial stages of Alzheimer's, individuals forget various things and cannot make decisions. An unforgettable moment Mrs Kao had as a caregiver was realising Professor Kao had difficulty making choices at a restaurant. "It is hard to make decisions for Alzheimer's disease patients. We all had chosen what we wanted to do, but he was still looking at the menu. My daughter caught on and asked whether he wanted to do chicken, fish, beef, or pork to make it easy. There were four choices, but it was still difficult for him." Nevertheless, Professor Kao was still pretty alert, and his excuse was "there were too many delicious things on the menu, and I could not choose it." She noted Alzheimer's patients are still in control of their intelligence at early stages.

Prof Joseph Sung Mrs Gwen Kao Prof Kao (Source CUHK website)

Professor Kao was diagnosed with Alzheimer's disease in 2002. "When I was looking after my husband, those were the days when no one knew much about Alzheimer's disease. It was one step forward, two steps back," Mrs Kao recalled. She suspected Professor Kao might have Alzheimer's after learning about former US President Ronald Reagan's public announcement of his Alzheimer's disease diagnosis.

In the initial stages of Alzheimer's, individuals forget various things and cannot make decisions. An unforgettable moment Mrs Kao had as a caregiver was realising Professor Kao had difficulty making choices at a restaurant. "It is hard to make decisions for Alzheimer's disease patients. We all had chosen what we wanted to do, but he was still looking at the menu. My daughter caught on and asked whether he wanted to do chicken, fish, beef, or pork to make it easy. There were four choices, but it was still difficult for him." Nevertheless, Professor Kao was still pretty alert, and his excuse was "there were too many delicious things on the menu, and I could not choose it." She noted Alzheimer's patients are still in control of their intelligence at early stages.

As Professor Kao's Alzheimer's disease progressed, Mrs Kao encountered increasingly challenging circumstances as a caregiver. The significant hardship she faced was to increase her patience. She explained, "I was short of patience 20 years ago, which was one of the things I had to change. I realised that as the disease symptoms progress, Alzheimer's patients have a lot of fear. He was afraid of the environment and things that were strange to him, and he could not understand. He had little self-confidence, so he got angry, thinking, 'what have I done wrong?'. Then he started yelling back at me, defending himself." It took her a while to comprehend his fear, which caused him to yell at her. She understood that yelling back only exacerbated the situation. "When you have an Alzheimer's patient, one thing you must learn is patience. You can control yourself, smile at him always, and give him confidence," she remarked.

As a caregiver, it is crucial to understand the prejudice faced by Alzheimer's disease patients. "They do not get angry and hit people all the time. It is a myth. An Alzheimer's patient is not normally violent," she said. If caregivers fail to handle the situation appropriately, patients may become fearful of their surroundings and resort to defensive behaviours, including yelling at others. "It is because you, as a caregiver, are not showing him a kind face. You should always be kind to them and know that they have lost control of some of their personality. It is the responsibility of a caregiver to control the situation. Show a smile, hold their hands, and give them a safe and comfortable environment. If violence persists, you must calm down, walk away, and leave the situation," she added.

Mrs Kao also stressed that not everyone fits the role of a caregiver for Alzheimer's disease patients, and it is not an easy task to be one. "It is personal whether you can be a caregiver or not. Not everyone can develop more patience like me. If you cannot learn to change and give a smile, you will get depressed over time." Indeed, caregivers might quickly get depressed due to repetitive and routine work without reward. "If you are depressed, you should not be caring for Alzheimer's patients," she added. "You have to take care of yourself as well."

To handle the stress of supporting loved ones with Alzheimer's disease, she emphasised the importance of caregivers taking some time off. "If you are under stress, you must escape the situation. Take your patient to daycare or get a relative to keep an eye on your patient," she commented. She recommends that caregivers spend time with friends, meditate, and find a quiet place to calm themselves down.

Supporting the Caregivers

Asking for support from relatives and friends and taking a break could be life-saving, but what can they do when they have nobody to turn to?

In 2010, when Professor Kao and his wife started their foundation, people didn't know much about Alzheimer's disease. Patients felt embarrassed; even some doctors thought it was a Western disease and ignored it by explaining that memory loss and brain shrinkage were normal aging processes.

"But the difference between memory loss and Alzheimer's disease is that patients' brains shrink more, and the memory loss is much more severe," emphasised Mrs Kao. She gave examples of symptoms such as losing the sense of direction and memories of familiar places.

Motivated by her experience, she founded the Charles K. Kao Foundation for Alzheimer's Disease. Even though they lacked the workforce, they strived to provide resources and raise public awareness towards Alzheimer's disease. One of the most ground-breaking projects was the brain health mobile vehicle, which offered free screening and cognitive training. Alongside the mobile van, Mrs Kao gave talks at public estates in all 18 districts of Hong Kong to educate the public and help patients and caregivers with Alzheimer's disease. "We became very creative because of the lack of manpower; we cooperated with other NGOs, and that's how," said Mrs Kao.

Their unwavering efforts paid off after years, the first time in the government's Mental Health Review Report 2017 when officials evaluated the existing healthcare policies targeting dementia patients and suggested new approaches to support them.

Although Alzheimer's disease patients and caregivers have started gaining more and more attention, we are still far from building the ideal health system and society for Alzheimer's patients.

"There should be more training for caregivers, more support from society, more things to be done for the caregiver," said Mrs Kao. The lack of staff and human resources training are also significant challenges faced. Understanding the limited space in Hong Kong, she suggested putting more effort into patient care and organising frequent visits, "the nurse may come for an hour or two to their houses for bathing, injections, and medication," explaining it would be better for professionals to handle the wounds, medication, and personal hygiene. However, she also noted that funding this kind of work is challenging.

Another critical challenge is the aging population. According to the Census and Statistics Department, Hong Kong's elderly comprise one-fifth of the population and is predicted to rise to one-third. Mrs Kao mentioned that building a holistic system for Alzheimer's patients will be more crucial in the next ten years.

"The government is slowly changing its way to improve the policies. There are economic difficulties in the government at the moment, but I hope that when the economy recovers, the government will put more effort into healthcare," suggested Mrs Kao.

Mrs Gwen Kao Interviewed by HKSAN-PUB.jpeg

Words to Students Studying in Healthcare-related Majors

There is currently no cure for Alzheimer's disease. Therefore, Mrs Kao has some words and advice for the students nowadays.

She sincerely hopes that students in healthcare-related majors will put more effort into disease and genetics research. "We are looking forward to the younger generations doing the research, as you are medical students," mentioned Mrs Kao with an encouraging tone. "For the next ten years, you guys will come up with something [to cure Alzheimer's]."

Nonetheless, she also advises all university students to enjoy their university lives. "It goes by so fast," said Mrs Kao. "It's the greatest part of your life because you have relatively few responsibilities and would not have to be in

charge of your finances." She looks forward to our generation running the community and taking up essential societal roles and responsibilities.

Conclusion

To conclude, it is not an easy task to be a caregiver of a patient diagnosed with Alzheimer's disease. It takes a long time for caregivers to adapt, find the best way to perform their tasks, and develop a sufficient understanding of the disease. Moreover, there may be certain stereotypes of Alzheimer's patients in the society, and these misunderstandings require time and effort to be cleared. On a societal level, improving research and public policies is the key to increasing the quality of life of Alzheimer's patients, and the new generation will be responsible for it in the future.

When asked about her regret of being a caregiver, she answered that maintaining sufficient eye contact was necessary. "It was something I learned in the end," said Mrs Kao in a rather serious tone. "My regret is, right at the end, when he was leaving me, I didn't realise his eyes were so alert." This indicated that Professor Kao had been trying to express himself through his eyes. He kept tracking Mrs Kao as well, and it seemed that he knew who Mrs Kao was. Although Professor Kao knew what was happening, Mrs Kao assumed he did not understand anything.

"Watch his eyes; he is looking at you; it's just that he cannot express himself. He knows what you are saying but lost his language," Mrs Kao reinforced the importance of eye contact in caregiver-patient communication. "So please look at his eyes."