Scourge of the Aging Society--Dementia

What is dementia? What is its impact on families and societies? What are the most common misconceptions about it? Beyond merely understanding it, is there anything one can do to prevent it?

In mid-June of 2008, the 11th Asia-Pacific Regional Conference of Alzheimer's Disease International (ADI) was held in Taipei. The sponsoring organization, the Taiwan Alzheimer's Disease Association (TADA), invited representatives from the 17 member states of the region to discuss ways to deal with this illness. While the number of people suffering from dementia is rising, there is a still a lack of general understanding about it, much less shared consensus. Hence the conference called on all national health authorities to make prevention and treatment of dementia one of the main focal points of their work.

Today's delusions may be yesterday's deepest fears. The virtual world imagined by the dementia patient may be based to a certain degree on reality.

Disease of the century

As populations become older, dementia-the incidence of which is closely connected to aging-becomes more and more common. According to ADI chairwoman Orien Reid, a new dementia case appears somewhere in the world every seven seconds, and it is expected that by 2040 the number of cases worldwide will rise sharply from the current level of 25 million to 82 million. Although the prevalence rate remains lower than that of cancer, heart disease, diabetes, and other chronic illnesses, the situation will certainly worsen as populations age, and more and more countries will fall within its "sphere of influence."

ADI executive director Marc Wortmann states that caring for a dementia patient not only has a serious impact on individuals and families, but has an even more severe effect on healthcare systems and budgets. According to a study estimating the costs to society of dementia published in 2005, costs for care worldwide are already at US$315 billion.

TADA director Lee Ming-been, a psychiatrist at National Taiwan University Hospital, points out that at present Taiwan has about 150,000 dementia victims, comparatively close to the figure for Australia (200,000), while still far from the numbers for the US (over 5 million), India (3.25 million), and Japan (1.87 million). He relates that the incidence of dementia rises with age. The prevalence rate among 65-year-olds is about 5%, but it increases to 20% among octogenarians. The number of victims in Taiwan is increasing by about 0.1% per year, with an estimated 15 new cases per day, and the number of cases is expected to double in the next 20 years.

Although dementia is not a physically destructive ailment like heart disease, diabetes, and other chronic illnesses, its "ripple effect" is not to be underestimated. Pai Ming-chyi, chairman of the Division of Behavioral Neurology at National Cheng Kung University Medical Center and president of the Zeelandia Dementia Association in Tainan, notes that studies done in other countries suggest that on average for each victim of dementia about 22 persons-including spouses, children, relatives, friends and coworkers-are impacted. Based on this estimate, as many as one-fourth of Taiwan's entire population is directly or indirectly affected by the disease.

From this MRI, you can clearly see the shrinkage in the hippocampus (the area indicated by the arrow) of a dementia victim.

Cancer of the memory

Dementia, formerly often called "senility," is a syndrome of progressive deterioration of the cognitive functions of the brain. Victims retain full physical mobility, and outwardly appear no different from normal persons, but they have suffered damage to their higher brain functions-including memory, attention, speech, cognition, judgment, calculation, completion of tasks, and problem solving-which affects them in their work and daily lives.

Most dementia is caused by the accumulation in the cerebral cortex and the hippocampus of amyloid plaques, causing damage to the neurons. From samples taken from the brains of victims of Alzheimer's Disease (AD), symptoms including neurofibrillary tangles, senile plaques, and cell vacuolation have been discovered. These pathologies can begin in the brain as long as 30 or 40 years prior to the appearance of obvious symptoms.

Dementia can usefully be divided into three categories depending upon the cause: degenerative dementia, vascular dementia, and other forms of dementia. (See Table 1.) AD, which results in degenerative dementia, is the most common cause of dementia today (accounting for 60% of cases), followed by vascular dementia (25%).

Put in simpler terms, dementia is a brain disorder that strips people of their memories and knowledge.

This is not the same thing as amnesia. Following the onset of amnesia, it becomes impossible for short-term memory to be converted into long-term memory, to learn new things, or to recognize new faces. But the individual will not forget friends, family, knowledge, or memories from before the illness. While sufferers of dementia in its initial stages also suffer amnesia (for instance, they forget what they have said just a short time before), as the disorder worsens, their entire memory is "deleted." This can also be accompanied by bizarre behavior-such as delusions of being victimized or robbed, or irrational jealousy-as loss of cognitive functions progresses.

In medical terms, the disease moves through several stages. Although different diagnostic systems use different criteria and recognize different numbers of stages, they all share the use of three easily understandable terms: mild, moderate, and severe. Symptoms start with consistent memory loss in the "mild" stage, to disorientation and loss of ability to do complex tasks in the "moderate" stage, to complete loss of any sense of time or place and the ability even to perform basic personal care in the "severe" stage. (See Table 2, which includes a fourth "moderate-severe" stage as well.)

Pai Ming-chyi says that dementia is really like cancer in that "the cause is unclear, it starts without any symptoms, it advances progressively, it occurs more readily in the elderly, it is partly inheritable in the family line (about 5%), and the last stop is a funeral. It's just that with dementia, it's a funeral that seems like it will never end."

According to Pai, based on clinical practice, the average age at which the illness becomes noticeable is 69, about the age when one's children are getting married and starting families of their own. The victim will lose speech, memory, cognition, and the ability to use appliances or tools, and will also lose the ability to think through and complete tasks.

However, there are also cases that occur before age 65, known as "early-onset" or "younger-onset" dementia. It is estimated that there are 30-40,000 persons in Taiwan below age 65 with this condition. Cathay General Hospital's head of psychiatry Dr. Chang Ching-jui states that in recent years there appears to have been an increase in the number of people with early-onset dementia coming in for treatment. Is it possible that dementia is "getting younger"?

"This may in fact be more a result of increased awareness of the illness," suggests Dr. Chang, "so that people who are affected know that they should seek help as early as possible." Pai Ming-chyi agrees, saying that there has not been an increase in early-onset dementia, but rather in the past it was often overlooked. In some cases, it was misdiagnosed as depression. But as awareness of dementia has spread, the rate at which it is being diagnosed has correspondingly increased.

Pai relates that when he first came to Tainan from Taipei four years ago, there were only 300 or so victims of dementia at the Cheng Kung University Medical Center. Now there are over 600. Nonetheless, he estimates that as many as 80% of actual cases remain hidden or undiagnosed.

"When the pond dries up and two fishes are left upon the dry ground, rather than have them stay alive by moistening each other with their damp spittle, it would be far better if they could live blissfully ignorant of each other in their native rivers." As the wellspring of the river of memory dries up in the dementia patient, these words of Zhuangzi evoke a sigh of sorrow.

Illness? Or just aging?

Despite the fact that public awareness of dementia is on the rise, there is still much debate about treatment. "Is treating dementia with medication purely cosmetic, so that it could be dispensed with?" Not only do most ordinary people have no clear idea of the answer to this question, there is also no consensus on this point in the medical community.

Controversy over treatment stems mainly from the ineffectiveness of what has been tried thus far. In particular, there is so far no therapy that can prevent the progressive deterioration of AD. Current treatments can only slow the rate of deterioration. Therefore some doctors feel that AD is "untreatable," and that what practitioners are currently doing is just a meaningless palliative.

Lee Ming-been responds, "It's already a considerable achievement to be able to slow deteroration, or even 'drag it out' until beyond the patient's physical life span." Studies done in other countries indicate that if treatment can be initiated when the disease is still in the mild stage, it can significantly improve the quality of life of both patients and their families. Unfortunately, most forms of dementia have no detectable internal symptoms, so that even the victim him/herself is unaware of the disease from start to finish. When you add to this that many elderly people in Taiwan still live on their farms, but their kids live and work in the city, so that the children only see their parents once every month or two, the result is that in actual clinical practice most cases are in the moderate stage by the time family members bring the patient to seek help.

Pai adds that in clinical experience, 30% of AD sufferers show no response at all to medications. In other cases, even if there is some initial response, the effectiveness cannot be sustained. Nonetheless, early discovery and treatment can unquestionably improve the recognition, behavior, and psychological state of the patient, and slow the rate of deterioration. The Bureau of National Health Insurance has already begun payments for some pharmacological therapies that improve cognitive functions and mood states, which is great news for families.

Neurotransmitters in the brain contain acetylcholine, which is considered to be closely related to learning and memory functions. For this reason, drugs known as "cholinesterase inhibitors" (such as Aricept, Exelon, and Reminyl) are prescribed to improve the cognitive functions in patients with degenerative dementia. (See Table 1.) They do this by raising the concentration of acetylcholine in the brain to improve memory and recognition functions. At the same time, anti-psychotics are used to control delusions, depression, insomnia, anxiety, and violent behavior.

Besides pharmacological therapies, the Wisdom School established by the TADA also is attempting to use other approaches to stimulate patients. One is called "reminiscence therapy," and uses conversation, photographs, music, and video to help recall. Another is art therapy, which uses music, dance, drawing, and so on, to moderate patients' emotional states and improve cognitive functions.

"Our goal is to stabilize victims at the mild stage of dementia," says TADA secretary-general Tang Li-yu. The Wisdom School has been operating for three years now, and based on her qualitative observations, the stimulation provided by reminiscence groups and art therapy has a very positive impact on the patients' ability to express themselves verbally, and also on their self-confidence.

"When the memory is erased, the only thing that can fill the gap is love," says Cheng Kung University Medical Center behavioral neurology department chairman Pai Ming-chyi.

Are you sure it is all illusory?

"For families, it is really torture to see someone you love fading away day after day, and there is nothing you can do about it. Therefore, if the medical profession can just do something, this is of positive benefit for both victims and families." Tang reminds us that dementia makes the patient like a fluorescent lighting tube in decline-flashing on and off, sometimes working normally, sometimes failing to come on at all. If families could be more alert and intervene early, there would be a lot less guilt and regret later.

But some people ask: Since there is no cure, what is the point of early diagnosis?

Pai Ming-chyi informs us that dementia patients live, on average, six to eight years after being hit with the disease, and sometimes as long as 20. Since most forms of the disease are degenerative and irreversible, the main importance of early diagnosis lies in avoiding unnecessary misunderstandings and conflicts, and providing an opportunity to plan for the future. It also reminds family members to treasure as much as possible the limited time remaining to them.

"When family members discover that their elders are suffering from dementia, the erratic behavior that was once intolerable and capricious becomes comprehensible, and therefore something that can be understood and accepted," avers Tang. When they find out that the rage, suspicion, animosity, destructiveness, and sabotage is in fact "illness," and not really directed at them personally, and that their loved one is not trying to put the "evil eye" on them, this is very liberating psychologically.

Nonetheless, although one can rationally understand that dementia is an illness, the damage caused by the victim can leave indelible scars that affect family members for the rest of their lives.

"The hardest thing for caregivers to bear is the delusions that dementia victims suffer." Pai Ming-chyi says that because those in the "severe" stage have lost their memories, and even their identity, and their consciousness is distorted, they often show the phenomenon of "dissociative disorder." But the stories and situations that patients imagine are so real to them that they can be very persuasive when relating these to other people. For example, one elderly woman spread such plausible rumors that her daughter-in-law was being unfaithful that the son divorced his wife.

Another example is that many elderly people will wake up the whole family in the middle of the night, exclaiming that they dropped something valuable behind the bed. But after everyone gets up and moves all the furniture around, they find nothing at all. Still worse, after everything is back to normal, it's not long before the drama repeats itself, leaving the whole family exhausted. Delusional persons also often have suspicions that others want to steal their money or harm them. For this reason some families even "forge" enormous bank balances, or put signs on the wall saying things like "Mom, I love you and will always take care of you," in order to calm their elders' fears.

"It also happens that it is only after dementia strikes a family member that other relatives really begin to know him or her," says Pai. Sometimes the behavior that looks inexplicable or even ridiculous has some root in reality. A case in point is one of an elderly man with moderate dementia who constantly accused his sister-in-law of plotting to do him in. It turned out that the man had once struck his sister-in-law across the face, and had always been afraid that she would one day seek revenge.

"Is it really necessary to separate the fact from the fiction?" asks Tang Li-yu. "Isn't it just possible that these elderly people, who have kept up a strong facade all their lives, are simply expressing their subconscious terrors?" Nonetheless, these apparently mindless but not necessarily unfounded "charges" often strike a nerve, raising long-repressed sensitive issues between family members, resulting in hostility and frustration that is only too real.

To return to childhood in old age.... Is this something to be happy about? Or is it a tragedy? This is a drawing done by a dementia victim in the art therapy class of the Wisdom School (run by the Taiwan Alzheimer's Disease Association).

It's not on purpose

Once delusions begin to occur, the victim enters an incomprehensible state. The cultured, well-mannered husband of decades turns into a completely different person, violent and impervious to reason. From losing the ability to think rationally and express one's needs and thoughts, victims gradually forget where they live, what era it is, who their spouse and children are, and even their own identity. Some even show compulsive behavior, such as non-stop pacing or turning around in circles, without even being conscious of their own movements. Finally they become indifferent and often incontinent, forget how to chew or how to walk, and become rigid and withdrawn, little different from a person in a vegetative state.

The course of the disease varies depending upon the individual, from just a few months to more than a decade. It is when the victim becomes confused and unresponsive, and no longer recognizes anyone, that is the most grueling period for family and caregivers. Some families hire live-in nurses to handle day-to-day care. A small number, who cannot cope at all, choose to put the patient into an institution.

Statistics say that 91.5% of dementia victims in Taiwan are cared for by family members, with only 3.5-5.9% in institutions. Besides the traditional notion that it is unfilial to place one's parent in an institution, another consideration is that there is a severe shortage of facilities and know-how.

Tang Li-yu points out that Taiwan has about 150,000 dementia victims, but there are less than 500 total beds for this condition in all of Taiwan's institutional care facilities. Nonetheless, she does not really want the number to expand rapidly, because "the government only subsidizes the basic hardware (at NT$200,000 per bed), but the really important things are training and allocation of manpower." Even if the hardware is there, if "software" like understanding of dementia patients' condition and training in their proper care is lacking, then it's all for naught.

Liu Yu-hsiu, a relative of a dementia patient, points out that it is not only the victims who lack cognitive awareness and comprehension-society as a whole is mostly clueless about the disorder. Liu relates that since her mother was diagnosed with the illness two years ago, she always tells people meeting her mother for the first time about her mother's condition. But most people have little or no understanding of what that really means, and become impatient or irritated with the older woman, who, despite being outwardly normal, has no control over her speech or behavior.

When memory and consciousness drip away, everything becomes peaceful, and there is no longer anger or avidity, sadness or joy; no greed, no resentment, no obsession....

It starts with understanding

A study done by Cheng Kung University Medical Center and the Graduate Institute of Family Education and Counseling at National Chiayi University reveals some very interesting numbers. Prior to the patient being diagnosed with dementia, 18% of family members had never even heard of the disease, 51% had heard the name but knew nothing about it, and 26% had some understanding of it. A mere 5% could be said to have had genuine understanding of what the diagnosis meant.

Even at medical institutions, there is a lack of knowledge about how to care for dementia patients. Early this year, Liu Yu-hsiu's mother created chaos after, on one occasion, she fell and broke her wrist, and, later, needed surgery for cataracts. Liu's mother refused to follow any instructions, cried out every day for the cast to be removed, and rubbed her eyes constantly. As Liu recalls with frustration, "When we asked the orthopedist and opthalmologist what to do, they couldn't give us any techniques on how to keep a dementia patient safe from harm during the recovery period."

Dementia has long been ignored in Taiwan. There is a serious lack of standards for specialists and treatments, and the same applies to institutional care. The helplessness and ignorance of families are even more heart-rending. In the face of this destructive and increasingly widespread disease, we cannot afford for anyone to be unresponsive.

Table 1: A Typology of Dementia

Table 2: Stages in Alzheimer's Disease

You can prevent or delay dementia!