The memory loss and personality changes brought on by Alzheimer’s disease have been described as “the long goodbye” until death. Alzheimer’s is an irreversible disease with no known cure. It slowly steals the victim’s mind, leaving behind worn-out family members and caregivers. To the extent that this disease can be slowed or even avoided it is certainly worth making the effort. If you are over the age of 50, at which early onset Alzheimer’s can begin, or have loved ones at that age or older, you may want to read this blog post. I can’t advise on how you can personally avoid the disease but I can provide a few suggestions on how not to increase your risk.
Many elderly people – as high as 30 percent – die with or from Alzheimer’s disease, the leading form of dementia. (Some 60-80 percent of dementia cases are diagnosed as Alzheimer’s.) But first, a conclusion from the Mayo Clinic which looks funny when examined out of the context of the whole article:
“Increasing age is the greatest known risk factor for Alzheimer’s disease.”
So, for those of you who have already missed the chance to die young and beautiful I have some suggestions. Keep reading.
The Quality of an Aging Life
It’s not just death itself that we fear, but our declining health as we age. Will we suffer for years with some dreaded illness or stay reasonably healthy, and pass away peacefully in our sleep at a ripe old age? Most of us don’t even want to think about it until we reach an age that is starting to come closer to our statistical life expectancy, by which time whatever health damage we are causing may already have been done.
Watching my late mother go through “the long goodbye” with Alzheimer’s encouraged me to research the issue. In this post I report some of my findings, and suggest what we can do to avoid or at least delay this obviously unpleasant way to go.
The Alzheimer’s Diagnosis
About 20 years ago I took my 86ish Mom, and Nic, my 92 year older stepfather, to be tested for dementia by one of Toronto’s top geriatric psychologists. Mom couldn’t answer the psychologist’s basic questions, like what day of the week or what date it was, who was our prime minister, or how to read the hands of a watch.
When it was Nic’s turn to be tested I warned the doctor that Nic was very hard of hearing. The doctor brought out a microphone for his own use and headphones for Nic. Nic could then hear the doctor very well. Although he had for years appeared “out of it”, Nic suddenly came to life. He answered most of the questions correctly, showing that he had severe hearing loss but was not suffering from any form of dementia. I was shocked. The assumption by his family and friends that Nic had dementia had isolated him socially and mentally, but quite wrongly.
Alzheimer’s and Dementia
There is a high degree of overlap between Alzheimer’s and other forms of dementia. However, Alzheimer’s provides evidence in the form of brain plaques and other physical manifestations that can be seen with costly medical imaging and spinal fluid taps. With the large number of people developing some form of dementia, if everyone with symptoms were to insist on CT scans and MRIs this would be very costly and perhaps even overwhelm our healthcare system. It would be encouraging if medical science could develop a reliable and inexpensive test. It appears that one is on the way, as discussed below.
Alzheimer’s Statistics are Unreliable and Probably Misleading
There are published statistics comparing the incidence of Alzheimer’s by country, usually shown as the number of deaths with Alzheimer’s per 100,000 population. The incidence appears higher in wealthier countries, probably because healthcare is more available, diagnoses are more available, and life expectancy is longer. There are probably more undiagnosed cases in developing countries with low per capita incomes and shorter life expectancy.
These statistics demonstrate the pervasive problem with determining whether correlation shows causation. Sometimes when two events occur in parallel one can be said to cause the other, but often it is a coincidence and the cause may lie elsewhere. We saw this issue with Covid 19, in the debate about reporting of deaths with Covid versus deaths by Covid. We can also see this in two successive sentences on the website of the Alzheimer’s Organization:
“1 in 3 seniors dies with Alzheimer’s or another dementia. It kills more than breast cancer and prostate cancer combined.”
The first sentence covers all cause mortality of people who have Alzheimer’s/dementia, including the most common causes of death in seniors, heart disease, cancer and stroke. The second sentence shifts the causality to say or imply that Alzheimer’s/dementia causes more deaths than two sex-specific, common cancers. However, it would be difficult to identify how many seniors died of Alzheimer’s alone, with no other co-morbidities, and I have found no source of such information.
Statistics by country present Finland as having the world’s highest rate of Alzheimer’s deaths per 100,000 population. When I looked into why Finland had the highest rate, one unconvincing explanation was that it is because Finland has a cold climate so that people stay indoors more and are more susceptible to moulds, which can affect the brain. But other countries are as cold or colder, yet have lower rates of Alzheimer’s. It may just be that more people in Finland seek and obtain diagnoses than in other countries.
A recent Canadian report from McGill University suggests that many or most cases of Alzheimer’s in most countries remain undiagnosed. The report predicts that as a new, more accurate diagnostic tool — a blood test — becomes better researched and proven over the next few years there will be a tsunami of new Alzheimer’s diagnoses everywhere.
Alzheimer’s Tests Raise Ethical Concerns for Society
Just because medical science may become much better at diagnosing Alzheimer’s at moderate cost does not mean that it is any better at treating it. There is evidence that by the time the first symptoms appear, much of the damage has already started and is progressing. The risk (or incidence) of dementia doubles every five years after age 65, and by 85, it is 33%. This raises the ethical dilemma of at what age people should be tested. It can have significant legal and other consequences if a blood test shows positive for Alzheimer’s, even if the person testing positive has what is known as “minimal cognitive impairment” for several years.
Here are some potential consequences of a positive blood test for Alzheimer’s that I have imagined, but I would also be interested in other examples from my readers:
- exclusion from driving a motor vehicle
- requirement of approval by a second person for consent to major surgery or other risky medical treatment
- prohibition against, or added complexity in, making or revising a will
- requiring a second signature or other verification for signing bank cheques or purchasing real estate or other major, long-term contracts
- special limits on the use of credit cards or online banking
- prohibition against, or special requirements for making an application for medical assistance in dying (MAiD)
Heredity or Lifestyle?
Because my mother was diagnosed with Alzheimer’s I became concerned about its heredity for my adult children and myself. In the excellent Mayo Clinic summary from which I quoted above it was explained that heredity is no more than perhaps a 1% factor compared with other factors. I understand this to mean that as we age the likelihood of developing Alzheimer’s increases almost regardless of whether our parents and grandparents also had it.
Having one or more close relatives with Alzheimer’s is believed to increase one’s risk, but the percentage of increase is unknown. And it may be for reasons other than genetics/heredity. For example, if someone’s parents were both alcoholics and the child is also a heavy drinker the family’s lifestyle may be a greater contributor to the child’s Alzheimer’s than genetics.
Looked at more optimistically, just because my mother had Alzheimer’s does not mean that I or my children will be significantly more likely to have it than the rest of the population at the same age. Other factors are probably more important than heredity.
From a variety of different sources that I reviewed, I am satisfied that no one knows exactly how to avoid developing Alzheimer’s. At our current collective knowledge the best we can do is to identify risk factors and do our best to reduce them. What follows comes from my research, but it should not be taken as medical advice for you or anyone else.
Identifying something as a risk factor often requires some degree of scepticism because of the correlation versus causation issue. Nevertheless, some commonly identified risk factors (in no particular order) would include: a history of significant head injury, chronic heart conditions, diabetes, untreated high blood pressure, smoking, excessive alcohol consumption (with the definition of excessive open to debate), excessive stress, untreated sleep apnea and untreated high lipids. The more of these risk factors that are present the greater the risk.
Hearing loss, and Tuning Out
The effects of hearing loss, along with poor vision, are important to understand. As with Nic, hearing loss encourages tuning out and decreased social interaction. Friends and relatives can unintentionally make this worse by ignoring the individual or by making comments that undermine the individual’s confidence in their ability to remember recent events or to carry on a socially acceptable conversation. The treatment of an age-normally forgetful but hard of hearing person as having dementia can become a self-fulfilling prophesy.
I use hearing aids, the technology of which has advanced greatly in recent years. They coordinate with my smart phone so that I can receive telephone calls and map driving directions directly through the hearing aids without any wires or external speakers. And my hearing aids are programmed on a frequency curve that is the mirror image of the curve of my hearing loss. There are also adjustable hearing modes for noisy places like restaurants or meetings, or for listening to music or conversations with people wearing facemasks. Mine also have a fall alert which will send a text message to three designated recipients if I fall, an additional safety feature. My audiologist can make certain adjustments to my hearing aids, remotely via the internet, regardless of where I am. All these hearing aid advances permit us to stay more completely involved in the lives of our families and friends, reducing the risk factors for Alzheimer’s.
With increasing life expectancy a greater percentage of the population will live to age 90, 100 or even longer. Unless a cure for Alzheimer’s is discovered, a greater percentage of the population will die with, or of, Alzheimer’s. However, if we make earlier, widespread, lifestyle improvements across the population these numbers can be significantly reduced. If we modify our lifestyles we may be able to reduce or avoid entirely the ravages of that disease on ourselves, and its impact on our loved ones.
And we won’t have to die young to do this.
This blog post is not intended to be a scholarly article in a peer-reviewed journal. Instead of inserting numerous footnotes or hyperlinks throughout the text I decided to provide a list of suggested reading, for those of you who may be interested in learning the source of some of my comments and generally learning more about Alzheimer’s/dementia.
- Mayo Clinic article, and links in that article to more information on Alzheimer’s.
- Science Daily article citing research from Cambridge University suggesting that wealthier countries have greater “risk” of Alzheimer’s. I’m not convinced that such correlation shows causation of higher risk.
- Alzheimer’s Society, several pages of its website are informative.
- Incidence of Alzheimer’s By Country: Death rates per 100,000 population.
- National Library of Medicine (USA): Why does Finland have the highest dementia mortality rate?
- McGill University : “A simple blood test that can detect Alzheimer’s disease (AD) has been discovered and validated in a joint effort by a McGill team and researchers in Sweden. Their results are published in the May issue of The Lancet Neurology. An accompanying commentary calls the discovery “transformative.””
- Washington Post article discusses clinical trials of blood tests in the US
- Bloomberg: blood test could detect Alzheimer’s years before symptoms occur
Categories: Alzheimer's, Deaths, Deaths by Country, Deaths per Capita, Dementia, MAiD, Medically Assisted Death, US
Thank you for this post, Andrew.
Adding to some potential consequences of a positive test for Alzheimer’s:
– More and more grandparents are raising or co-raising their grandchildren, or are providing daycare and/or casual sitting for them.
The following McGill article notes the challenges faced by grandparents who are primary caregivers to their grandchildren, a taxing role at the best of times: https://www.mcmasteroptimalaging.org/blog/detail/blog/2020/01/29/grandparents-raising-grandchildren-social-support-needed
There are all kinds of possible consequences here for a positive test. If Gramma is primary caregiver, who will raise the child when she can no longer? Gramma might not be allowed to sign off on important medical decisions for her grandchild, nor on myriad other documents endorsed by a guardian. Family tensions might go through the roof. Gramma might not be allowed to babysit alone anymore.
– Am I obliged to disclose a positive test on my dating app? We takes our chances when we fall in love with another human being, unexpected illness and injury is part of life. A negative test doesn’t preclude some other form of dementia, like Lewy Body, a devastating stroke, or a fall. Or innumerable other insults to the brain. And a positive test doesn’t preclude a good decade with a late-life lover. How will a positive affect one’s search for love and companionship? If we both test positive, will we need the approval of guardians to marry? To merge our assets?
– What kinds of self-palliation will I be permitted or denied? Will I lose my boating license and be unable to go fishing in solitude on the lake I’ve navigated for forty years? Must I hand in my key to the money box I voluntarily oversee for the soup kitchen?
I’m wrenched merely writing these examples. And between us, they’re not exhausted.
Thank you, again. – Pam
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We will have to see what the courts do in protecting those with the mental disability of dementia under s. 15 (1) of our Charter:
15 (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
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Brain imaging (CT/MRI) in dementia is done not so much to confirm Alzheimer’s but to rule out other diseases, a few of which may be treatable. In my clinical experience, I can’t think of any patient who was helped with imaging but families tend to want it somewhere along the way if it is readily available. I often found that rather than being relieved that the scan didn’t show anything else that needed surgery or something, family were vaguely hostile that the test that they had waited so long and struggled so hard to get didn’t give any information, as if I had held out false hope that it might. My mother did not have brain imaging as far as I can remember but she and my father lived in a small town without a hospital. She indubitably died of, not with, Alzheimer’s.
This is not to give medical advice but just to suggest to readers that if your parent’s doctor doesn’t suggest doing any imaging she isn’t being cavalier or slipshod. A confused person will not like being in an MRI tunnel for 20 minutes and if given sedatives as per “routine” practice, she may become delirious and fall at home after the test.
A blood test for Alzheimer’s would not have immediate implications for one’s freedom to function independently in society. Driving, financial capacity, consent to treatment including MAiD, are all functional assessments that would be (and are now) made independent of any blood test, even if the test was agreed by all to be 100% specific and “correct”. We focus on what the person can do, not what diagnosis he has. Or as Osler put it, the patient who has the disease is more important than the disease the patient has. The Ministry of Transportation could (and does) of course use whatever criteria it judged to be in the public interest concerning the assessment of drivers referred through mandatory reporting by physicians. But revoking a driver’s licence on the basis of a mere diagnosis or suggestive blood test is not its current philosophy.
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There is a big difference between the way physicians and transportation bureaucracies look at these issues. Physicians consider the individual patient while the highways department considers aggregate accident statistics. My concern, based on recent personal experience, is not so much with mandatory reporting by physicians, but rather, mandatory and somewhat arbitrary testing methods required by highways departments in some or all Canadian provinces.
I recently moved to British Columbia and had to undergo a mandatory age triggered health check by a physician. It took me quite a while to find a physician who does this test. When I found one, I was startled at how superficial and quick it was. There was no test of my reflexes or cognitive ability.
The office had a long line up of waiting patients and the physician appeared to be in a hurry to get all of them through. His receptionist gave me a test with an eye chart to check my vision (no test of peripheral vision, depth perception, colour blindness etc.).
Then the physician asked me a series of questions, to which I could have answered anything I wanted. He then had me walk about four feet (two or three short steps) from my chair to his closed office door and back to my chair as some sort of test. He also took my blood pressure. There was no other medical examination of mind or body. He concluded that because I was able to hear him talking to me and have a coherent conversation I had normal hearing and adequate cognitive ability.
I was then charged $250 for this few minutes and his report to the Ministry recommended that I be tested again next year. This looks like a highly profitable business for physicians willing to do it as the revenue per hour is probably well in excess of many other medical services covered by government payment schedules. Physicians are free to charge whatever they want for such driver testing, as it is not controlled or paid by either the healthcare system or the highways department.
Once an inexpensive blood test for Alzheimer’s becomes available it could be a complete game changer. The highways bureaucracy can then decide at what age someone shall have this mandatory blood test, and also decide what test result will cause termination of older drivers’ licensing. Similarly, once this blood test becomes ubiquitous it can be used by other government agencies for a variety of administrative purposes affecting rights.
For example, our current Parliament has a special committee studying whether someone suffering from mental illness alone should be eligible for MAiD. From what I have read, dementia/Alzheimer’s is not considered mental illness but rather, a brain illness or damage, which is more physical than mental. If that is correct, this committee will not be deciding the central issue for dementia/Alzheimer’s, which is advance requests for MAiD.
The issue is whether someone with an early diagnosis of Alzheimer’s can make an advance request for the procedure in anticipation of declining cognitive ability as the disease progresses. As Alzheimer’s progresses it would eventually preclude sufficient mental capacity to provide informed consent to MAiD. I can see a blood test result becoming the legal deciding factor for advance requests by Alzheimer’s patients because it is simple, inexpensive and provides a hard number.
I can foresee a potential danger that the Alzheimer’s blood test will, for a number of different government and business purposes, reverse your Sir William Osler quotation, and instead, treat the disease as more important than the patient.
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It sounds as if the cursory examination you received, Andrew, was intended to pass as many people as possible. Few people who could get themselves to the doctor ‘s office would fail such a test. For Ontario, I know only that drivers sent by the Ministry for routine examinations because of age (as opposed to having a medical condition that their doctor had to report) do receive some elements of the exams we use for cognitive assessment of people suspected of having dementia. I know this only from reports of our older friends—“Yeah, I had to draw a clock and do that thing with the intersecting pentagons”—, not from ever doing these exams myself under contract for the Ministry. I don’t know how many impaired drivers these routine exams pick up. I suspect not many, compared to the number that are reported for actually apparent impairment noticed by family members. But every time a demented driver kills someone, the public says, “This could have been prevented with better screening of older drivers.”
I reiterate that Ontario’s Ministry of Transportation would not, under its current practice, suspend driving privileges on the basis of a single blood test for Alzheimer’s. A person whose CT scan shows a stroke is not barred from driving unless the stroke has caused impairment of ability to do the cognitive and physical tasks of driving, which a mere CT (or blood test) cannot show. Of course the Ministries can use any criteria they want for granting the privilege to drive a motor vehicle on public roads but I believe they would continue to focus on function, not diagnosis. If they did decide to require a putative Alzheimer blood test in older drivers, my experience with Ontario’s MTO predicts that they would use it to require more frequent cognitive screening in drivers with positive tests but who seemed intact on casual conversation. I believe they would not revoke a licence if the driver could still pass a cognition test and was not blind or physically frail.
As we all ought to remember from Covid, no test is perfect. All have false positives and false negatives. The less likely it is that a person has the disease in the first place, the less likely that his positive test is a true positive, that he actually does have the disease. If a spry older person is as sharp as a tack, reads books and does her own banking and investment, a positive test for Alzheimer’s would almost certainly be a false positive. Doctors giving advice to Ministries about how to use such a test if one becomes available would have to stress this inherent uncertainty in all testing. (I have seen presentations by defense lawyers showing how even forensic DNA testing can be undermined if the pre-test, or prior, likelihood that the suspect was the culprit is vanishingly low, e.g., with an airtight alibi corroborated by multiple independent eye-witnesses.)
You are correct that current Parliamentary deliberations about medical euthanasia in mental illness do not consider Alzheimer’s disease to be a mental illness. A person with Alzheimer’s can now request and consent to it if she has capacity. The problem is that most people don’t want it while they have capacity but say they would like to have it done when they lose it, consented to by someone else. This is not now possible and is a classic Catch-22.
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Hi Andrew. I enjoyed reading this – thank you. One of the things th
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