Hong Kong will be unable to handle the explosion of dementia patients over the coming years, experts warn, and the problem swept under the carpet for so long has become a monster which will threaten to overwhelm the city.
A large part of the problem was that the government had done nothing since 1997 in terms of long-term planning for medical and social services in preparation for a fast-growing elderly population, said University of Hong Kong social work professor Law Chi-kwong.
"Our problem is that we've ignored it - nothing long-term has been formulated by the government since the handover," said Law. "I am afraid that the monster under the carpet could overwhelm us."
What is even more worrisome is how the government - despite lobbying by grassroots groups to put in place subsidised and dementia-specific care - remains reluctant to plan for the future.
Hong Kong currently has an estimated 80,000 people with dementia, but only 2,000 receive government support services. Hong Kong's diagnosis rate is also low - at just over 10 per cent.
According to a 2006 report by the firm Access Economics for Asia-Pacific members of the worldwide organisation, Alzheimer's Disease International, the prevalence rate - the percentage of the population which is estimated to have dementia - would rise to 3.59 per cent in Hong Kong in 2050.
The rate is much higher than South Korea's projected 1.19 per cent and India's 1.02 per cent in the same year. But it is comparable to Japan's 4.34 per cent and Singapore's 3.58 per cent.
Maggie Lee Nga-yee, executive director of the Hong Kong Alzheimer's Disease Association. Photo: Thomas Yau
"Many countries are facing similar issues due to an ageing population, but what we did not do was prepare for it - that's the difference," said Maggie Lee Nga-yee, executive director of the Hong Kong Alzheimer's Disease Association, which provides support services to dementia patients and their families.
Singapore had dementiaspecific daycare facilities and an elderly home, said Lee.
South Korea launched a national dementia strategy in 2008. Since then, the diagnosis rate has risen from 3.7 per cent to 60 per cent. The number of dementia care professionals increased from 1,000 in 2007 to 6,000 in 2012, according to the Dementia Asia-Pacific Report released by Alzheimer's Disease International last year.
Japan also prepared a five-year plan in 2012 being implemented by localities, which shifts the care of dementia patients from hospitals to the community, as well as from crisis management to an early approach.
Also making changes is Macau, whose government recently invited Hong Kong dementia experts to help formulate a 10-year care plan.
All this time, Hong Kong's own government has been silent.
"We have lobbied to include dementia-specific services in the list of government-subsidised services. We've demanded, begged and called for a long-term strategy to deal with the upcoming wave. But I've been very disappointed," said Lee. "And because we don't prepare, a lot of elderly people will suffer."
Lee's association has been using this month to raise awareness about the dire situation in Hong Kong, including observing Alzheimer's Disease Awareness day today.
Cheung Lai-chun knows first-hand how tough it is to care for someone with dementia, and to find and be able to afford the support services.
Two months ago, Cheung rushed to her 86-year-old mother's home in Lam Tin after her sister found their mother unconscious on the floor.
Her mother, Lau Ho-moon, had forgotten to eat for two days.
Cheung said one sister lives with their mother, while the other five siblings were scattered across Hong Kong.
But this sister's job has long hours, and that particular weekend she was called to the mainland to work, leaving their mother alone at home.
"We thought dementia was just being forgetful. I didn't know it could go so wrong," Cheung said.
Lau was diagnosed with dementia last year during a routine hospital check, but the siblings thought it wouldn't be that bad as Lau was able to walk, talk and even shop for groceries on her own.
In the first few months, Lau went to a hospital for some simple cognitive training. After the hospital classes ended, the siblings tried to find similar training in the community, but failed.
Cheung said they didn't think it was a big deal, but looking back she blamed herself for not noticing the signs and taking better care of her mother. She said: "During the past half year, my mother's situation really deteriorated."
Since the accident, Cheung connected with the Hong Kong Christian Family Service Centre, and her mother has started attending cognitive training classes there once a week. She also enrolled her mother in another paid daycare programme with another NGO, hoping to slow down the illness.
"We have a huge demand for our classes," said Tong Choi-ying, head of the Christian Family Service Centre's elderly care services. "But this is a self-funded programme and so elderly people have to pay for it."
Tong said elderly people like Lau needed more interaction with other people and could not be left at home alone. But Cheung, who lives about two hours away from her mother, said it had been hard caring for her given her current situation.
Due to economic and family concerns, the care of her mother falls mainly on her and another sister, who take turns to visit and keep her company. Cheung is now working part-time because of this.
A Department of Health spokesman said a group was set up in 2013 under the Review Committee on Mental Health to study dementia and review the way its services are delivered. But two years on, the group has yet to release its report.
A draft seen by the contains mostly directional principles and called for cooperation between the medical and social welfare sectors.
"The Hospital Authority has a tidy system, but it doesn't catch all," said authority geriatrician and consultant Dr David Dai Lok-kwan, who said Hong Kong's dementia diagnosis rate is about 10 per cent, compared to Britain's 40 per cent and South Korea's 60 per cent. "It's third-world low. It's terrible ... Without early diagnosis, there are fewer ways to slow it down."
Dementia diagnosis and treatment was not a priority which would cost society an incalculable amount both in monetary and social terms if the problem was not treated now, Dai added.
Dementia would cost Hong Kong an estimated US$3.2 billion this year, including US$190 million in medical expenses and US$1.5 billion in informal care provided by the likes of families who did not receive payment, according to the Alzheimer's Disease International report.
Dai urged the medical and social support sectors to collaborate and set up a system where diagnosed patients can transfer easily from the hospital to the services they need in the community. The doctor also urged the Hospital Authority to provide training to frontline general and family doctors to diagnose dementia.
Law Chi-kwong, who chairs the Community Care Fund task force, suggested launching a few pilot programmes specifically to tackle dementia through the fund in order to help push the government into creating more concrete plans.
The government does not keep statistics on people with dementia, nor care service users with dementia.
What is dementia?
A range of symptoms associated with the deterioration of memory and other mental abilities, according to the international Alzheimer's Organisation. Alzheimer's disease is the most common type- accounting for 60 to 70 per cent of all cases. Other types include vascular dementia, which happens after a stroke, and Parkinson's disease.
When does it usually occur?
Only 5 per cent of cases are early onset - which typically happens to those under 65. Early onset frontotemporal dementia is the hardest type to treat, which is characterised by behavioural change and speech issues instead of memory loss.
Is there a cure?
There is no cure for dementia. Symptoms can only be controlled and minimised with medicine during the early and middle stages of the disease.
What are the scenarios families fear?
Lau Lun-fu's mother got lost in Sheung Wan one morning and after hours of frantic searches, police in Tseung Kwan O found her at 4am the next day. "I cannot bear to think what if she got lost in a wooded area, or up on the hills. We would've lost her forever," said Lau, who then quit his job to become his mother's fulltime carer. He said memory loss in elderly people needed to be taken seriously.
How can you help a loved one with dementia?
Head of elderly services at the Hong Kong Christian Family Service Centre, Tong Choi-ying, said cognitive exercises like simple mathematics, mahjong or other simple activities to stimulate memory use would help delay the rate of mental ability deterioration. More conversation and stimulation like going to the market would also help.
How is it to live with dementia?
"They will forget what the toilet bowl is for ...it's like they return to not knowing what anything is. [My mother] would point to her own poop and ask what that is," said Alice Lee, who lives with and cares for her elderly parents who both have dementia Lee said one day her mother locked herself in her room, and when they finally unlocked the door her mother had defecated on the floor. Her husband started laughing and chatted away with Lee's mother as he cleaned up the mess. "You won't scold a baby for pooping his pants, so this should also be treated normally," she said. "We take it with a light heart - [my parents'] needs have just changed."
This article appeared in the South China Morning Post print edition as: The dementia monster
