Gwen Kao: a guiding light on Alzheimer's

Gwen Kao, the wife of Nobel physics laureate Charles, has spent half her married life caring for family members with Alzheimer's. She tells Linda Yeung about the foundation she established to raise awareness of the disease

PUBLISHED : Thursday, 21 August, 2014, 5:29pm
UPDATED : Thursday, 21 August, 2014, 5:29pm

It's a cruel fate for a brilliant scientist to be afflicted by a disease as debilitating as Alzheimer's. For Gwen Kao Wong May-wan, wife of Nobel physics laureate Charles Kao Kuen, the realisation that her husband was in the grips of dementia came as a great shock.

The mother of two has now spent more than half of her 55 years of married life caring for family members with the irreversible disease, which also struck her father-in-law.

The twin episodes have been trying for Kao. But she has also learned much about the little-understood condition and set up a foundation in her husband's name to spread awareness.

She was angry and upset, she says, when her husband's symptoms first appeared in the mid-2000s. "I used to get mad and yell at him," she admits. "It took me a while to learn that it doesn't work. It's like learning how to bring up a baby."

It was a tragic mental decline. In 2009, before her husband's condition became known publicly, he was jointly awarded the Nobel Prize and earned the nickname "father of fibre optics" for his work in the field.

Her husband became frustrated and angry in the early days of the disease, Kao says, and she would become irritated. "When he did silly things, like ask, 'Where is the toilet?' and couldn't find it, I'd get upset and shout at him. I really upset my daughter-in-law, who thought I was terrible to him."

Stress would weigh on her and she would find relief by throwing her china plates and cups into the sink. "As the caregiver, you are in control of your actions, so you have to hold your anger," she says.

"None of us knew how the condition would progress. We didn't understand that forgetfulness also meant forgetting skills and awareness in the later stages."

It wasn't Kao's first brush with the disease. In 1987, her octogenarian father-in-law started to show signs of forgetfulness. He was living with the couple in Sha Tin at the time, when Charles Kao was vice-chancellor of Chinese University, and was cared for by Gwen and a maid. "He kept asking questions. Also, he'd have lunch but then tell me, 'I am very hungry.' I thought it was senility; we didn't know it was a disease."

When her husband's tenure ended at Chinese University in the mid-1990s, the couple moved back to the US. By then Charles' father had been living in a care home for three years, and his condition was stable.

"The home was not ideal; he was not very happy. His condition deteriorated very quickly [after the couple left] and he passed away there," she says. That was 10 years before her husband was diagnosed with the same disease.

More than a decade on, Charles Kao, 80, is still physically fit and happy, but has the mind of a two-year-old, needing help with eating and putting on shoes. But he still recognises his wife and two US-based children.

The responsibility of looking after him falls mainly on his British-born wife, who quit her career in computing when the couple moved to Hong Kong in 1970, and a maid.

Patience and a deeper understanding of his condition have greatly helped Gwen. Now 79, she still plays tennis, which gives her an outlet for her stress, and there is little sign of fatigue on her face.

After coming to terms with her husband's condition, she founded the Charles K. Kao Foundation for Alzheimer's Disease four years ago to help others in the same boat as her. She now flies between her home in San Francisco and Hong Kong a few times a year.

Since last year, the Hong Kong-based foundation has held brain health education sessions at more than 100 schools, teaching students the symptoms of dementia through talks, puppet shows and dramas. It is hoped they will alert busy parents to the possible onset of the disease among their parents, should that happen.

Scientists know more about Alzheimer's disease today than they did when Charles Kao was diagnosed, but its cause remains largely a mystery. Gwen Kao suspects a possible genetic link in her husband's case, or that it might be related to his stressful job as a vice-chancellor. It's all still guesswork.

The World Health Organisation estimates 35.6 million people are suffering from dementia worldwide. It forecasts that number to double by 2030 and more than treble by 2050.

Locally, statistics from the Health Department show that, in 2006, one in three people aged over 85 suffered from dementia - the eighth leading cause of death in the city in 2012.

Sufferers are eventually unable to coordinate basic motor skills such as swallowing, walking or controlling bladder and bowel movements. Difficulty swallowing can lead to food being inhaled, which can cause pneumonia.

Although it is more prevalent among those aged over 80, dementia can strike people as young as 40. However, the rate of early onset is very slow.

Besides forgetfulness, other symptoms of early stage Alzheimer's disease include not wanting to change clothes or take a shower. The disease is irreversible, but there are three things that can help slow deterioration: daily exercise, such as walking briskly for 30 minutes; a balanced diet and social activities.

Living in a lonely and confused world, those with dementia can easily become agitated and quarrelsome, Kao says. "There are four things that make them belligerent: tiredness, hunger, pain and fear. A lot of things make them fearful. For example, if you take them to a strange place with loud noises ... you should soothe them by taking them away."

I used to get mad at him. It took a while to learn that it doesn't work
Gwen Kao

Kao hopes that the work she is doing through the foundation will instil in the younger generation a greater understanding of the disease and more empathy for those whose lives have been blighted.

Having battled the condition for years, Kao advises caregivers never to allow themselves to burn out. A family should never leave the job to just one member. "It's a 24-hour, seven-day-a-week job; the caregiver must find time for themself and get away. Once a carer gets burned out, they get ill, depressed, their immune system weakens, and that does not help the situation at all."

Kao is confident that she will get more support from her children when the need arises. "When the time comes, they must take the responsibility to care for their parents. They will do so. It is part of our culture. Right now they know I am coping."

Locally, her foundation is manned by two staff, and is focused on promoting care for the elderly. It is collaborating with NGOs to run day-care centres called Eldergartens for dementia patients, providing them with social interaction and nursing care while giving their home carers a break.

Kao also gives educational talks in housing estates. The mission is helped greatly by the widespread publicity given to her famous husband's case.

Under a project funded by the Jockey Club Charities Trust, the foundation also has a van, bearing the face of Charles Kao on the side, which travels across the territory offering free assessments and information about the disease. It aims to visit all 18 districts in the next two years, before funds run out.

One hurdle to setting up centres in various districts is high rents, Kao says. She hopes people from a wide range of backgrounds will be able to access the foundation's services.

"Quite often the middle class just leave family members at home [if they have dementia]. Where they live, there aren't the facilities for dementia patients."

Kao has set an example with her positive attitude towards caring for a heavily dependent spouse.

"They say we marry someone for better or for worse, and it's been a life that has had a lot of the better and the very exciting. You have to take the worse, too," she says. "I wish there was no such thing as Alzheimer's disease. Charles might have accomplished much more.

"There is no cure. You have to go with the flow. Maybe in five years they will be able to stabilise it, and in 10 years they will find a cure."