Tell the important stories now
Today is World Alzheimer’s Day, 107 years after it was first named in a dry chapter on ‘‘Presenile and Senile Dementia’’ in the 8th edition of Emil Kraeplin’s Handbook of Psychiatry. Liz Breslin examines the issue.
ALZHEIMER’S disease affects more than 40 million people worldwide, and is predicted to affect 150 million people by 2050.
If that just sounds like a lot of bothersome numbers to you, allow me to translate. If you are alive now and you live until your 80s, your chances of getting Alzheimer’s are almost one in two. Will it be me? Will it be you? If you’re the other one of two, congratulations! You get to be the caregiver. And now consider this: of the top 10 causes of modernday death, Alzheimer’s is the only one we can’t cure, prevent or slow down — yet.
If I was going to choose a calendar day to mark Alzheimer’s, I might choose November 26, which was the day, in 1901, that one Auguste Deter, the wife of a railwayman called Karl, was admitted to the catchily called ‘‘Irrenschloss: Castle of the Insane’’. Or April 6, the day she died in 1906, after which Alzheimer sliced up her brain to show the classic shrivelled walnut look replicated in all those scary online quizzes asking you to CLICK HERE NOW FOR THE FIVE SIGNS THAT YOU HAVE ALZHEIMER’S.
The end of Auguste Deter marked the start of the ascendancy of Alzheimer’s research. Kraeplin named the disease after Alzheimer because he was the one who had painstakingly written up 32 pages of interviews with Deter, in detail, in a high German dialect called Sutterlin, and in Latin. He was the one who drew intricate pictures of her microscopic synapses with their brain tangles and plaques that look like scary mashups from
Monsters Inc and things from the deep blue beyond. He was also the one who’d married a minted heiress, Cecille Simonette Nathalie Geisenheimer, whom he’d rescued overseas. She died in 1901, leaving him three children and a sizeable fortune. His sister looked after the kids so he could completely dedicate himself to the brain research for which the institutions didn’t even have to pay him.
It’s a strange and scary societal thing, this naming of diseases after one of their discoverers. And the forgetting of the naming of things is one of the things we fear most about Alzheimer’s. Who are we when we lose our car keys, our memories and our language?
People are throwing everything in the mix for answers. On the science side, you can get your APOE genome tested and hope and pray it comes out e2 or e3 instead of the black sheep e4. Would you want to know? On the arts side, people with Alzheimer’s are asked, as part of their ongoing assessments, to draw a clock face. Let’s hope a different approach appears before the entirely digital generation start sliding into dementia.
For solace, there are poemremembering and singing projects. And if you’re into quackery, you can replace every fat in your pantry with coconut oil and add turmeric, sage and cinnamon to every sugarfree cake you make, forever.
I only believe the research I want to believe. Hence I was excited this week to read, in separate studies, that both three cups of coffee and three glasses of champagne a day may be good at warding off Alzheimer’s. I will be happy to participate in any further research on either for the good of us all.
Lisa Genova, author of Still Alice, a heartwrenching read about earlyonset Alzheimer’s, sums up the current research in her TED talk — genetic factors, baconloving lifestyles, slothful sedentariness, sleepless nights and most of those cheery heartrisk factors are all likely to tip your scales towards getting Alzheimer’s. So far so dismal. Except . . . hold the seesaw please! There is hope. The one glimmer of a fix is, quite simply, to learn stuff. Lots of stuff. New stuff. Languages, card games, skills, games, recipes, pathways, activities, facts, fictions. The theory works like this: learning creates new synapses and then more synapses you have, the less of a percentage of them are affected, even if you’ve started the scary amyloid decline.
It’s a thought that gives me hope. I liked learning about Aloysius Alzheimer when I was writing my book. I loved learning about my grandmother’s stories and happenings when it was nearly too late. The time is probably now, and now and now to tell ourselves the stories we want to remember, to look at Alzheimer’s disease through all the lenses we have and to ask ourselves, not ‘‘Will it be me?’’, but ‘‘What can we do?’’
Who are we when we lose our car keys, our memories and our language?