“Once the dementia deteriorates, the person you love is no longer there inside.” Gwen Kao Wong May-wan, 81, wife of Nobel Prize laureate Professor Charles Kao Kuen, has spent more than half of their 57 years of married life caring for her ailing husband. “He is not there. You have to accept it, and face it bravely.” Nobel winner wants to die in peace at home, wife says, as she urges Hong Kong to change culture on end-of-life care She says she is speaking out now to encourage other caregivers and to urge the Hong Kong government to educate the public about a disease that is set to explode as the city ages. It was agonising for Kao when dementia afflicted her husband, a hugely respectable physicist dubbed the father of fibre optics. Over the years she has gone through various stages as a dementia caregiver and knows that the strength to continue is drawn from the help provided by others. But she says many medical professionals in Hong Kong lack the skill in helping families to understand and get to grips with dementia, and it is difficult for relatives to seek help. “The government is not doing much about educating the public about dementia,” she says. “Doctors don’t know how to do it either. They don’t know how to talk to the patients and are a bit worried talking about the disease at the early stage.” He has lost all control of his daily functions and everything. No speech. He’s been like an 18-month-old Gwen Kao Wong May-wan The scientist, 82, has rarely accepted media interviews in recent years as his condition entered the final stages. On the day of the Post ’s exclusive interview, he looked spirited on the campus of Chinese University in Sha Tin, where he founded the electronics department and was vice chancellor for nine years until 1996. Students greeted him warmly as he returned his signature innocent smile. Although he lost his speech three years, the professor still tries hard to speak but can only manage a mumble. He is also a lot less mobile these days. He now has to walk with a person at each side and relies on a wheelchair to get around. “In the past two months he began to lose his balance. He is not steady on his feet anymore,” Kao explains. “He has lost all control of his daily functions and everything. No speech. He’s been like an 18-month-old.” It means she faces an even heavier burden in taking care of him. “The caregivers can be helpless,” she says. Charles Kao Kuen’s wife: we must banish stigma of Alzheimer’s She founded the Charles K. Kao Foundation for Alzheimer’s Disease in 2010 in the hope of educating the public and enhancing the care and support of patients and their families. The foundation has received many inquiries from worried families about where to turn for help in coping with a dementia patient. “The caregiver does not know what to expect, that’s why you need a good support group. You need social workers to tell you what’s coming,” she says. “They should also learn how to relax and do something they like to let go of the burden from time to time, so that they will not crushed by the pressure.” The dementia population in the city is expected to grow from 100,000 in 2015 to 300,000 in 2039, but Kao says the government has made no significant effort in educating the public about the disease. She urged the government to increase support for the community and raise awareness. “Even children should know about dementia, so that they can help to detect the condition when their parents or grandparents show early symptoms.” She also believes Hong Kong doctors should be better trained to discuss dementia with patients and their families at an earlier stage in “a tactful way”, especially when there is no cure and the condition will only get worse.