The ‘dementia tsunami’ and why Hong Kong isn’t ready to cope with expected surge in cases as population ages
A dementia care crisis looms for Hong Kong, experts say. Cases often aren’t spotted early enough, medical care is fragmented, families don’t plan for what happens if an elderly relative has it, and advance directives aren’t widely used
As Hong Kong’s population ages, experts warn of a looming crisis over the long-neglected problem of dementia, a disease that is misunderstood on many levels.
Dementia is projected by 2050 to afflict a third of the city’s inhabitants aged 80 or over. The most common type is Alzheimer’s disease, a life-limiting illness marked by a gradual deterioration in one’s mental capacities including memory, judgment and the ability to communicate.
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Eric Chan, a Hong Kong Neurological Society council member, is concerned about the public’s poor understanding of dementia. “In the early stages, people can’t differentiate what kind of memory loss is psychological, that is associated with, say Alzheimer’s, or if it’s just forgetfulness or decline of brain power due to ageing,” the neurologist says. Consequently, sufferers get medical attention later rather than sooner.
Institutional issues complicate the way cases are handled, Chan notes.
“Dementia is a topic that is quite separately managed by different disciplines: psychiatrists, geriatricians, general doctors, even neurosurgeons in private practice,” he says. Neurologists in Hong Kong have a less active role in dealing with dementia than they do elsewhere. He urges a more integrated approach to address this issue.
Dr Yolanda Lo, executive director of the non-profit organisation Ageing and Better Care Limited, concurs and adds: “[There are] very few neurologists, psychiatrists, and psychologists, and specialists and [they] are even more needed. This is not a single problem.”
In fact, dementia is a ballooning, multi-faceted problem, one made worse by legal and medical gaps, that will snowball into a “dementia tsunami” which Hong Kong will be ill-equipped to handle as its population ages, she says.
Lo, too, is alarmed by the lack of dementia awareness. She is especially concerned about ignorance of tools available to plan for what happens if a person suffers dementia, such as advance directives, and about a lack of progress on the public health, institutional, and legal fronts that make the city a harsh and unfriendly place for dementia sufferers.
Few Hongkongers have heard of or seen an advance directive, yet it is a key element of advance care planning, which a person uses to spell out their end-of-life care preferences in the event they become incapacitated. The formal document covers specifics such as a “DNR”, or do-not-resuscitate, order.
In public hospitals in Hong Kong, medical staff handling palliative care initiate such discussions with terminally ill patients such as those with late-stage cancer or renal failure. Lo considers such patients fortunate in that they learn about advance directives.
The challenge for dementia patients is that discussion about an advance directive must happen while their facilities are still intact.
Functional Assessment Staging (FAST) is a common diagnostic test for Alzheimer’s, which identifies seven stages of the illness. It can take years for the disease to intensify from mild to severe. By stage seven, symptoms of severe cognitive decline are evident: the patient cannot talk, walk, eat or breathe on their own.
Lo says discussion of an advance directive, and decisions about which directions to make, should be made at stage three of Alzheimer’s, when cognitive decline is still mild.
A directive is not a complete solution, Lo says, since, even if dementia sufferers have made decisions in advance, public health workers may not abide by them.
That is just one of the consequences for dementia sufferers of the absence of a law governing advance directives in Hong Kong. “The ambulance crew do not honour the advance directive because there is no legislation,” Lo says. They will attempt to save a life even if the patient has completed a form that says they do not want to be resuscitated.
Another complication is the absence of a central registry of advance directives. Health care professionals lament the challenges of the present manual system of flagging records that makes it difficult to check the validity of a directive and whether a particular hospital branch has the most up to date version of a patient’s directive.
Care providers may ultimately disregard an advance directive because they fear the legal repercussions of following it.
One of 18 older adults Lo surveyed in a 2017 City University of Hong Kong study as part of an investigation of advance care planning described the difficulty of finding someone to be responsible for speaking up for a patient when they can no longer speak up for themselves. “Now all three of us [never-married individuals] need health care proxies … how can we possibly ask our only niece to act for all of us? She’ll be scared away,” this 74-year-old responded.
Lo advocates talking about dementia with one’s children so that, rather than avoid the topic, family members plan for the possibility and take action. She urges the Hong Kong authorities need to improve education about, and awareness of, issues surrounding dementia, including the use of advance directives to plan future care.
“If there is public education, then we have awareness,” she says. Lo encourages Hongkongers to learn about dementia and families to build consensus about a dementia sufferer’s end-of-life care preferences.
Her study notes that one particular group may be vulnerable when dementia care in Hong Kong becomes a crisis: single people, whether widowed, divorced, or never married.
There is extensive evidence that people living alone have a higher risk of developing dementia. A 2017 study published in the Journal of Neurology, Neurosurgery and Psychiatry found the risk of dementia for single people was 42 per cent higher than that for couples. The researchers suggest part of the reason for this is their lower level of social stimulation.
The number of single elderly in Hong Kong is forecast to rise to 1.13 million, or more than 41 per cent of over-65s, by 2064. Lo says single people are not aware that they are at higher risk of suffering dementia and that they need to identify and designate a proxy – someone to speak on their behalf if they cannot speak for themselves.
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“The most difficult thing in advance care planning is finding a surrogate or proxy,” she said.
“We need education, we need prevention, we need planning; our legal tools, our manpower, our education and our professional training all need to step up.”