John Mann and the Lessons of Early Onset Alzheimer’s

The death of John Mann of the band Spirit of the West has hit British Columbians particularly hard. He was indeed our spirit, funny and brave and honest.

And as with the death of Gord Downie, the shock was not lessened by our knowledge that it was imminent.

The dementias of old age were grim even when we accepted them as part of the human condition: live long enough past the God-ordained threescore and ten, and you would forget everything, even how to speak and how to swallow.

But it was a different kind of dementia that presented itself to Alois Alzheimer in 1901.

He was then a 36-year-old doctor in Frankfurt with an interest in psychiatry and neurological disorders. A 51-year-old woman named Auguste Deter had for several years been showing signs of dementia, and late in 1901 her husband had her admitted to a mental institution. Alzheimer, the director of the asylum, took an interest in her case; he had seen similar dementias, but only in much older patients. When Auguste died in 1906, Alzheimer dissected her brain and made discoveries that founded a whole branch of medical science.

Deter’s brain cells, when stained and studied under a microscope, showed the neurofibrillary tangles and amyloid plaques that still characterize most cases of the disease. Another patient, “Johann F.,” showed the same tangles and plaques. A senior colleague suggested the condition be named “Alzheimer’s disease,” and so it has become. Researchers are still exploring ways to remove or prevent those tangles and plaques.

Over a century later, we know far more about the disease than Alzheimer did, yet we are still groping for a cure — and for better methods of diagnosis and prevention. Even in the 1950s and ‘60s, memory lapses in old people were dismissed as “senility” or “second childhood;” the public did not understand Alzheimer’s, or distinguish it from other dementias, until later in the century.

In part, of course, that was because fewer people then lived long enough to develop dementia.

Early-onset Alzheimer’s that strikes patients like Mann has turned out to be a very rare condition: according to the Alzheimer Society of Canada, it makes up only two to eight per cent of all dementias and affects just 16,000 Canadians under 65. The Canadian government estimates that well over 400,000 of us are living with some other kind of diagnosed dementia.

And like the other dementias, it’s frustratingly hard to find the causes of many early Alzheimer’s cases. The Mayo Clinic says some have “familial Alzheimer’s disease,” inheriting it from a parent or grandparent who had also developed it. In Mann’s case, it may have been a consequence of his successful battle with colorectal cancer.

Whatever the cause, Mann has done us all a service — in part by making his case public and thereby drawing attention to the dementias, and in part by his determination to go on living and performing to the best of his considerable ability. Persons with dementia seem to remember music longer than other things, and Mann certainly remembered his own. When he did forget his own lyrics, he used an iPad.

In his response to a personal catastrophe, John Mann was as funny and brave and honest as he’d always been, and he set us all an example: death may kill us all in the end, but it does not necessarily destroy us.