Alzheimer’s isn’t just about memory loss

I am delighted to read the letter in today’s Straits Times by two doctors putting a lid on the enthusiasm — misplaced I think — with which the newspaper had published the findings of Prof Kua Ee Heok  on the topic. (see letter and earlier report reproduced below)

Besides these two good doctors, my old classmate from Convent days, MA-MD was visiting Singapore from the United States and read the same article. MA-MD, who is an established geriatrician newly retired from her practice in Virginia, was kinder. She thought the ST had either misinterpreted or over-summarised Prof Kua’s findings!

As a lay person who has been looking after her mother diagnosed with mild cognitive impairment at Changi General Hospital some 8 or 9 years ago– based on a simplistic test at best — and who has been working closely with a Tan Tock Seng Hospital geriatrician for perhaps longer than that to understand mum’s problems, I will say the illness is as irreversible as autism.

It’s not just about memory loss; it’s not about engaging or not engaging with the patient. It’s like having a brain that’s like a computer constantly in “hang” mode 😥

For autistic kids, it’s about working really hard to make sure they learn to do some of the basic things that separate a human being from an animal, such as having showers and brushing their teeth. And with effort, they could be taught more, much more.

For cognitively impaired adults due to the onset of old age or a combo of old age and other brain-related illnesses, it’s about ensuring that they retain whatever basic life skills they have, such as every little thing from eating with utensils to sitting at table or lying down on a bed, even as the ability to do these things independently is inexorably lost like water through a sieve.

As I write this, I watch my mother being told repeatedly to put on her indoor slippers after taking off her outdoor shoes on returning home from an outing. It’s simple, routine, something which she has done all her life and yet she has now to be reminded, and reminded repeatedly.

Ditto, brushing her teeth on waking up and before going to bed. We have progressed — or should I say regressed?– to where we have to put tooth-paste on the toothbrush and leave it as a “cue” or a “clue” to prompt her to clean her teeth, in the morning and at night.

Most times, she doesn’t know whether she’s thirsty or hungry and eat and drink only when meals are put in front of her. Hence the importance of asking regularly whether she would like a sip of water or other liquid in between meal times.

At other times, her brain signals to her she’s super hungry and she would hobble with walker to forage for edibles in the cupboards, sometimes making do even with 3-in-1 coffee sachets, when she couldn’t find biscuits or nuts. And, no she doesn’t make coffee. She just eats the contents, as is 😥

Well, mum has had super early intervention. She’s taken medication to slow down her cognitive impairment, starting with Aricept. Then we tried Exelon patches to make it easier on her stomach but because it affected her dry and sensitive skin, we reverted to Aricept. As we learnt of another cognitive medication called mementine or Ebixa we asked and got her doctor to prescribe.

However, the doc drew the line when we asked for mum be prescribed with a combo of Aricept and Ebixa — as I know that has been done in the US and of at least one case directly from a friend whose elderly dad in Shanghai takes such a combo.

Prof Kua is right. Alzheimer’s isn’t a death sentence. But it’s definitely an incurable disease that remains with the patient, for better or worse, till death do they part. 😦

www.straitstimes.com

Published on Jul 19, 2013

No evidence of delay in dementia progression

TUESDAY’S article (“Don’s study sheds light on dementia here”) raised the controversial statement that “early treatment – including proper nutrition, stimulatory activities such as exercise or listening to music, and medication – has been shown to effectively delay the progression of dementia”.

Dementia is a syndrome of cognitive impairment with diverse causes.

Three diseases make up the bulk of dementia cases in Singapore: Alzheimer’s disease, vascular dementia (when one or more strokes damage critical brain functions) and mixed dementia (a combination of stroke and Alzheimer’s disease). The rate of disease progression varies greatly even within each category.

Everybody hopes that treatment can delay disease progression in dementia. Unfortunately, apart from blood pressure control and anti-stroke medications for vascular dementia, there is no evidence that we can delay dementia progression.

Many researchers have admitted failure in modifying disease progression in Alzheimer’s. Drugs may improve short-term memory, alleviate symptoms, make patients more manageable and even help to delay institutionalisation, but they do not change the natural history of the disease.

Researchers planning well-funded prospective studies of drug and non-drug interventions in dementia are confounded by two major problems.

First, dementia, including Alzheimer’s disease, is a clinical diagnosis. The milder the dementia, that is, the earlier one makes the diagnosis, the less certain one is of the aetiological diagnosis.

Second, any assessment of social intervention or drug efficacy is confounded by variables like age, educational background, social class, medical co-morbidities and so on.

Professor Kua Ee Heok’s retrospective study, based on a clinical diagnosis of dementia made over the last 15 to 20 years – in some cases, before high-quality neuroimaging was available – will face insurmountable challenges.

Misdiagnosis or misclassification (which is a common problem even in the best of hands) could easily corrupt data.

The condition of a patient with vascular dementia arising from a few small strokes could remain static for many years before a second stroke in a critical location, or even new-onset Alzheimer’s disease, pushes him overboard. It would be easy to misinterpret this delay in progression and give credit to social intervention or medications.

Thus, we cannot see the scientific basis behind the claim that “with proper treatment, a patient with a mild form of the condition (dementia)… can delay the onset of the next stage to six or eight years later”.

Tang Kok Foo (Dr)

Tan Chue Tin (Dr)

Copyright © 2013 Singapore Press Holdings. All rights reserved.

Published on Jul 16, 2013

Don’s study sheds light on dementia here Tracking disease progression can help sufferers get treatment early

By Janice Tai And Joan Chew

DEMENTIA patients in Singapore can expect to live 10 to 12 years after being diagnosed, longer than the eight years for those in the West.

But Professor Kua Ee Heok also warned that as many as 80 per cent of sufferers here do not benefit from early treatment, as only a fifth of all cases here are detected.

Prof Kua, a senior consultant psychiatrist at the National University Hospital (NUH), will present his findings on dementia life expectancy at next month’s World Congress of Asian Psychiatry in Bangkok.

Using previous studies and data collected from patients at NUH’s memory clinic over the last 20 years, the veteran geriatrician has mapped out the course of dementia in Asians for the first time.

By breaking down the debilitating condition into mild, moderate and severe stages, he has also managed to figure out the health cost of dementia, and how much stress care- givers face.

“This helps families know what to expect and do at each stage, and also helps policymakers to develop support services,” the 64-year-old said.

Around 28,000 Singaporeans aged 60 and above have dementia, and the number is projected to hit 80,000 by 2030.

The condition robs a person of his memory and ability to think, which affects his daily life. It also increases the risk of death as it lowers the person’s immunity to other diseases.

Given the smaller family units in the West, patients there are often sent to nursing homes, where their condition deteriorates faster if there is inadequate care.

Those diagnosed with dementia here live longer because the condition is detected and treated earlier. And that is key.

This is why Prof Kua has spent the last 20 years mapping out how the disease progresses, so that family members and doctors can recognise the symptoms.

He found that someone with mild dementia is usually forgetful – for instance, failing to remember where he left his car keys. During this stage, the patient usually spends a monthly average of $280 on medical bills.

Those with moderate dementia go on to see and feel things that are not real. These may include feelings of paranoia, such as a belief that people are planning to steal from the patient.

At this point, the cost of health care can soar by more than four times to $1,250, as patients have to see the doctor more frequently, and may even need to hire a maid to provide home care.

It is also at this stage that caregivers face the highest levels of stress, as patients are more likely to display distressing behaviour – such as rushing to the door when footsteps are heard – because of the hallucinations and delusions they experience.

When the condition becomes severe, the patient may no longer recognise his family or even his own reflection. Medical costs drop to around $850 a month, given that the patient would likely have to be kept in bed most of the time.

Prof Kua said that early treatment – including proper nutrition, stimulatory activities such as exercise or listening to music, and medication – has been shown to effectively delay the progression of dementia.

With proper treatment, a patient with a mild form of the condition, for instance, can delay the onset of the next stage to six or eight years later, instead of the usual four.

“With what we know now, family members and doctors can better help patients seize the day so that they can have more than a few good years,” said Prof Kua.

“Dementia is not a death sentence.”

jantai@sph.com.sg

joanchew@sph.com.sg

Copyright © 2013 Singapore Press Holdings. All rights reserved.

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