Project and content management for Contemporary Authors volumes
WORK TITLE: In Pursuit of Memory: The Fight Against Alzheimer’s
WORK NOTES:
PSEUDONYM(S):
BIRTHDATE: 1987?
WEBSITE:
CITY:
STATE:
COUNTRY: United Kingdom
NATIONALITY: British
RESEARCHER NOTES:
PERSONAL
Born c. 1987.
EDUCATION:University College London, Ph.D.
ADDRESS
CAREER
Author and neuroscientist.
WRITINGS
Also contributor to the Wellcome Trust, Telegraph, and Guardian.
SIDELIGHTS
Joseph Jebelli’s expertise lies mainly in the field of neurobiology. He studied the subject at University College London, where he was also able to receive his Ph.D. In an article featured on the Telegraph Online, Jebelli explained that his interest in neurobiology grew from his experiences with his grandfather, who began suffering from Alzheimer’s during Jebelli’s early adolescence. His condition continued to deteriorate, yet it took five years for Jebelli’s grandfather to receive an official diagnosis. Jebelli one day found himself comparing his grandfather’s health to his grandmother, who was still completely lucid and independent. He began to consider the question of how some individuals came to be affected by Alzheimer’s later in life while others did not.
In Pursuit of Memory: The Fight Against Alzheimer’s is the culmination of Jebelli’s years’ worth of research. Jebelli devotes In Pursuit of Memory to tracking the history of Alzheimer’s and professional attempts to study and get to the bottom of its development. Much of Jebelli’s findings come with conversations with fellow scientists—a pursuit that leads him around the world.
Jebelli starts off the book by relating the story of his grandfather and his struggle with Alzheimer’s, as well as Jebelli’s own questions regarding what factors could lead to the disease’s development. He examines the factors that are thought to cause some degree of risk, as well as what advancements scientists have made so far in discovering what makes Alzheimer’s tick. In the process, Jebelli also examines the tales of similar degenerative diseases, such as Posterior Cortical Atrophy and Kuru, and how while these diseases were equally puzzling at first, professionals were able to make phenomenal progress in uncovering their roots. Jebelli concedes that, at the moment, we lack much in the way of information about Alzheimer’s disease. However, he also presents the idea that, with enough time and effort, professionals will also be able to make much more headway in terms of Alzheimer’s research than they have already made. A contributor to Publishers Weekly called the book “lucid and emotionally rich in its portrayal of those who investigate the illness and those who endure it.” In an issue of Kirkus Reviews, one writer remarked: “Jebelli analyzes every facet of Alzheimer’s with personal empathy and scientific rigor, a combination that makes for enthralling reading.” On the Guardian Online, Robert McCrum commented: “Jebelli’s own pursuit of answers to his grandfather’s death turns into a fascinating quest at the frontiers of neuro-degeneration.”
BIOCRIT
PERIODICALS
Kirkus Reviews, September 1, 2017, review of In Pursuit of Memory.
Publishers Weekly, September 4, 2017, review of In Pursuit of Memory, p. 84.
ONLINE
Felicity Bryan Associates, https://felicitybryan.com/ (May 7, 2018),
Guardian Online, https://www.theguardian.com/ (May 29, 2017), Robert McCrum, review of In Pursuit of Memory.
Hachette Book Group Website, https://www.hachettebookgroup.com/ (May 7, 2018), author profile.
NPR, https://www.npr.org/ (January 2, 2018), Terry Gross, “Neuroscientist Predicts ‘Much Better Treatment’ For Alzheimer’s Is 10 Years Away.”
Telegraph Online, https://www.telegraph.co.uk/ (May 20, 2017), Victoria Lambert, “How my grandfather’s Alzheimer’s battle inspired my search for the cure.”
JOSEPH JEBELLI
Joseph Jebelli, PhD, obtained his doctorate in Neurobiology from the Insitute of Neurology, University College London. His research focuses on the cell biology of Alzheimer’s disease. He lives in the United Kingdom.
JOSEPH JEBELLI
Dr Joseph Jebelli is a British neuroscientist and author. His first book, In Pursuit of Memory: The Fight Against Alzheimer’s, published in 2017 by John Murray Press in the UK and Little Brown in the US, received ecstatic reviews and was named Science Book of the Month by the Bookseller. It was longlisted for the Wellcome Book Prize and shortlisted for the Royal Society Science Prize. Rights have also sold in ten other languages. Joseph began to work on Alzheimer’s – specifically, using the body’s immune system to halt its progress – while studying for his PhD in Neurobiology at University College London. He continued neuroscience research at the University of Washington, United States, before moving back to London. In addition to numerous academic articles on Alzheimer’s and the brain, Joseph has written for the Guardian, the Telegraph, and the Wellcome Trust.
How my grandfather's Alzheimer's battle inspired my search for the cure
Joseph Jebelli has researched Alzheimer's
Joseph Jebelli has researched Alzheimer's CREDIT: CHRISTOPHER PLEDGER
Victoria Lambert
20 MAY 2017 • 5:00PM
Joseph Jebelli recalls the childhood visits of his grandfather, Abbas, with huge affection. “He’d often visit us in Bristol from Tehran where he lived,” says Jebelli, a softly spoken 31-year-old scientist. “I remember him as this enchanting and mysterious figure, yet very energetic, and extroverted. He adored my sister and I, telling us about the great Persian kings of the past.”
The “leathery” old man would arrive carrying suitcases stuffed with pistachio nuts and Persian sweets, “smiling until the corners of his eyes wrinkled as he handed us our gifts”.
But by the time Jebelli was 12, Abbas was not himself anymore. “He became more introverted, indefinably peculiar. He was only 68, but quite confused.”
This is an exciting time. We are finally targeting the underlying causes, not just treating symptoms
Joseph Jebelli
Four years later, his grandfather no longer recognised Jebelli. “He spent a lot of time disengaged from the world with a glassy vacuous stare.
“He would wander off from dinner table and my dad would have to find him. My grandfather didn’t know where he was or what he was doing.”
Loss of navigation is one of the first signs of Alzheimer’s disease – although at the time, the family put Abbas’s confusion down to old age.
The trips to Bristol stopped, and Joseph’s father Abol would visit Tehran instead. There, he learnt Abbas was deteriorating further. “He would get lost and head back to the old family home, which he had left decades before,” says Jebelli. “Things came to a head when he could no longer recognise his wife Afsana, and started calling her by the name of his first wife.”
In 2003, when Jebelli was 17, Abbas was diagnosed with Alzheimer’s. Yet while his grandfather suffered, Jebelli’s maternal grandmother “was as sharp as a pin”. This sparked curiousity in the mind of the teenager: why did some elderly people decline and others not?
It prompted Jebelli to go on something of a quest to understand what had happened to his grandfather’s brain. He wanted to “understand how we first lock horns with the disease” that claimed the smiling, sociable grandparent he once knew. He studied neurobiology, first at University College London and then the University of Washington, Seattle, specialising in Alzheimer’s research.
What he learnt both in the lab - but also talking to patients, doctors and families - has resulted in a book In Pursuit of Memory, which recounts the history of the disease, plus the strides being taken to understand, and ultimately cure this frightening illness.
Best of all, the book is positive. Jebelli says, “This is a really exciting time for Alzheimer’s. We are finally targeting the underlying causes, not just treating symptoms.”
Hope cannot come soon enough. Alzheimer’s is now acknowledged as the leading cause of death in the UK, responsible for more than 61,000 fatalities, according to the Office for National Statistics - a staggering 11.6 per cent of all recorded deaths. Sufferers can succumb to infections, especially pneumonia (Alzheimer’s weakens the immune system), as well as from complications such as stroke or heart failure.
Why is it now so prevalent? “The biggest factor is that we are living longer,” says Jebelli. “There is better diagnosis, too. Although we think only 48 per cent of people with dementia are spotted even now; 52 per cent just live with it.”
Joseph Jebelli's grandfather in London
Joseph Jebelli's grandfather in London CREDIT: CHRISTOPHER PLEDGER
The question of diagnosis is one of the great mysteries of Alzheimer’s - it cannot be absolutely confirmed until brain tissue is examined at post-mortem. But that is changing, says Jebelli. “We do tests of memory, cognition, spatial awareness, and we can scan the living brain for signs of beta-amyloid.”
A naturally occurring protein, beta-amyloid accumulates in clumps, known as plaques, inside the brain of someone with Alzheimer’s, destroying healthy neurons, and is thought by some scientists to be its cause.
But there are two other major theories - one involving the protein tau (tubulin-associated unit), which can become contaminated and slow down the messages travelling between our brain cells. The third is a genetic variation, APOE4, which can interfere with the body’s ability to absorb glucose, leading to the brain being starved of the energy it needs to function.
None of these theories has been conclusively proven, says Jebelli. But each offers new potential for drug targets and therapies. This is crucial when the only options so far have been the Aricept generation of drugs, which only offer temporary relief of symptoms for six months to a year. There has also been a failed series of trials into antibody drugs, developed in response to a theory that the brain’s immune system itself can be harnessed to treat Alzheimer’s.
Obviously, though, any new therapies are no use without a better diagnostic tool. Scientists can find markers in spinal fluid via a lumbar puncture to predict with accuracy who will get Alzheimer’s in 20 years’ time, but the test is invasive and painful, and currently only used in medical research.
Meanwhile, scientists in Georgetown, Washington are exploring ways diagnosis could be made via eye examination. But the best hope, says Jebelli, is research looking into biomarkers that can accurately predict the likelihood of Alzheimer’s and could be identified by a cheap, fast blood test - avoiding the confusing, drawn-out process that Jebelli’s own grandfather experienced.
“Alzheimer’s starts long before the symptoms start to show. So the goal is very early diagnosis in middle age, treated with a drug, which would stop the disease in its tracks before it had begun to cause brain damage. Even if we couldn’t stop people getting Alzheimer’s, we could enable them to outlive the onset of symptoms.”
By 2025, Jebelli adds, results should be available from stage 3 trials into drugs, which could do just that by targeting beta-amyloid, clearing the plaques or preventing them building up in the first place.
What about those patients whose brains are already stifled - is there any hope? “There is amazing work being done with stem cells, growing them in petri dishes, turning them into brain cells, but it is a long way off.” Could the future include transplanted brain tissue? “Never say never.”
Joseph Jebelli with his grandfather
Joseph Jebelli with his grandfather CREDIT: CHRISTOPHER PLEDGER
Given Jebelli’s family history, would he be interested in knowing if he carried a gene for the disease? “Genetics does play a central role. The fact my granddad had it, does increase my risk.”
But he has not been tested: “There is still no treatment available, so what would be the point?”
There is good evidence, however, that lifestyle interventions can help ward off the illness. Jebelli - and his colleagues, he notes - follow that advice, by eating a Mediterranean diet, getting plenty of sleep and exercise, and keeping stress to a minimum.
“I guess I do fear developing Alzheimer’s,” he says, “yet I am optimistic. I think we are genuinely close to developing a drug to prevent or alleviate the pain and suffering that goes along with it.”
His grandfather Abbas died of pneumonia in 2012 at the age of 82, loved and cared for by his three daughters.
Jebelli knows that Abbas - to whom his book is touchingly dedicated - would be very proud of his work. “He was very unwell by the time I started researching it. But I like to think he knew what I was doing and why.
“The disease destroys the part of your brain that contains your short-term memory first,” adds his grandson. “But one of the last parts it reaches is that which controls emotion. Alzheimer’s can’t take that love away.”
In Pursuit of Memory: The Fight Against Alzheimer’s by Joseph Jebelli is published by John Murray (£20). To order your copy for £16.99 plus p&p call 0844 871 1514 or visit books.telegraph.co.uk
In Pursuit of Memory: The Fight Against
Alzheimer's
Publishers Weekly.
264.36 (Sept. 4, 2017): p84+.
COPYRIGHT 2017 PWxyz, LLC
http://www.publishersweekly.com/
Full Text:
* In Pursuit of Memory: The Fight Against Alzheimer's
Joseph Jebelli. Little, Brown, $28 (320p)
ISBN 978-0-316-36079-1
The struggle to cure a cruel and increasingly common disease leads down intricate pathways of scientific
discovery in this fascinating primer. Neuroscientist Jebelli recalls his grandfather's decline from Alzheimer's
disease and meets other victims of the neurodegenerative illness, projected to become the second leading
cause of death by 2050. He describes Alzheimer's progression from forgetfulness to a loss of personality
and inability to recognize family members to comprehensive mental failure, with sufferers unable to speak
or even swallow. But the book's heart is his account of scientists' efforts to understand Alzheimer's, from its
mysterious telltale clusters of beta-amyloid protein to its hereditary under pinnings. In addition to
specialists, Jebelli visits families whose tragically high rates of Alzheimer's led to the identification of
genetic mutations that cause the disease. The saga is full of hopeful-and frustrating--turns as ingenious new
research suggests potential treatments that prove effective in mice but disappointing in humans. One
promising, if ghoulish, approach is to transfuse plasma from young people into old, which seems to have
remarkable restorative effects; alas, there's too little young blood available to treat most Alzheimer's cases.
Jebelli's exploration of the vexed science of Alzheimer's is lucid and emotionally rich in its portrayal of
those who investigate the illness and those who endure it. (Nov.)
Source Citation (MLA 8th
Edition)
"In Pursuit of Memory: The Fight Against Alzheimer's." Publishers Weekly, 4 Sept. 2017, p. 84+. General
OneFile, http://link.galegroup.com/apps/doc/A505468129/ITOF?
u=schlager&sid=ITOF&xid=b9446ec1. Accessed 22 Apr. 2018.
Gale Document Number: GALE|A505468129
4/22/2018 General OneFile - Saved Articles
http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MARK_LIST&userGroupName=schlager&inPS=true&prodId=ITOF&ts=1524439438270 2/2
Jebelli, Joseph: IN PURSUIT OF
MEMORY
Kirkus Reviews.
(Sept. 1, 2017):
COPYRIGHT 2017 Kirkus Media LLC
http://www.kirkusreviews.com/
Full Text:
Jebelli, Joseph IN PURSUIT OF MEMORY Little, Brown (Adult Nonfiction) $28.00 10, 31 ISBN: 978-0-
316-36079-1
Alzheimer's disease has stymied attempts at a cure for generations, but exciting advances in biomedical
technologies have yielded new understanding of why the disease occurs and how to eradicate it.By
conservative estimates, Alzheimer's affects 47 million people worldwide, yet its pathology remains largely
unknown. Jebelli, who was inspired to become a neuroscientist after his grandfather was afflicted, tells the
story of the disease's devastating impact through the voices of patients and their families. He further
unpacks the evolving scientific understanding of the disease by traveling the globe to interview the intrepid
researchers who have dedicated their careers to Alzheimer's, attempting to characterize its causes and
symptoms in order to devise effective treatment options. While it has long been understood that abnormal
"plaques" and "tangles" in the brain erode neuronal function, resulting in progressive dementia, why these
abnormalities occur remains mysterious. Also opaque is how to prevent them, even as diagnostic techniques
grow more sophisticated, identifying biomarkers and other signs of the disease sometimes years before the
onset of symptoms. Yet biomedical innovations such as stem cell engineering and Clustered Regularly
Interspaced Short Palindromic Repeats offer real hope that a means to reverse symptoms or eliminate the
disease may be within reach. Intriguing, as well, are the clinical trials that suggest certain lifestyle changes--
the familiar trio of diet, exercise, and mental engagement--may be our best bet at wholesale prevention. An
elegant and precise writer, the author follows every lead for a cure with the panache of a detective novelist,
giving readers much to hope for despite the devastation Alzheimer's has left in its wake. Based on his
meticulous and wide-ranging research, he makes a convincing argument that Alzheimer's will be defeated in
the decades to come. Jebelli analyzes every facet of Alzheimer's with personal empathy and scientific rigor,
a combination that makes for enthralling reading.
Source Citation (MLA 8th
Edition)
"Jebelli, Joseph: IN PURSUIT OF MEMORY." Kirkus Reviews, 1 Sept. 2017. General OneFile,
http://link.galegroup.com/apps/doc/A502192225/ITOF?u=schlager&sid=ITOF&xid=8b7e50bc.
Accessed 22 Apr. 2018.
Gale Document Number: GALE|A502192225
Neuroscientist Predicts 'Much Better Treatment' For Alzheimer's Is 10 Years Away
January 2, 20181:20 PM ET
Heard on Fresh Air
Terry Gross square 2017
TERRY GROSS
Fresh Air
Neuroscientist Joseph Jebelli says that while a certain amount of memory loss is a natural part of aging, what Alzheimer's patients experience is different.
Roy Scott/Ikon Images/Getty Images
British neuroscientist Joseph Jebelli first set out to study Alzheimer's because of his grandfather, who developed the disease when Jebelli was 12.
In the years that followed, Jebelli watched as his grandfather's memory started to disappear. But Jebelli points out that although a certain amount of memory loss is a natural part of aging, what happened to his grandfather and to other Alzheimer's patients is different.
"Losing your keys, forgetting where you put your glasses, is completely normal," he says. "But when you find your glasses and your keys and you think, 'What are these for?' — that's a sign that there's something else going on, that it's not just a memory loss."
To Help Others, One Couple Talks About Life With Early-Onset Alzheimer's
SHOTS - HEALTH NEWS
To Help Others, One Couple Talks About Life With Early-Onset Alzheimer's
Though there is no cure for Alzheimer's disease, Jebelli is optimistic about current research involving neural stem cells and cell regeneration.
"Just the last few years alone have seen some serious breakthroughs in Alzheimer's research," he says. "Ten years should be enough time for us to develop, if not a cure, certainly a much better treatment than what we have at the moment."
Jebelli's new book is In Pursuit of Memory: The Fight Against Alzheimer's.
In Pursuit of Memory
In Pursuit of Memory
The Fight Against Alzheimer's
by Joseph Jebelli
Hardcover, 320 pages purchase
Interview Highlights
On how the brain changes with age
Healthy brains shrink and lighten by about 10 percent between the ages of 50 and 80. It used to be thought that the reason they shrink and lighten by that degree is because you lose loads of brain cells, but actually you don't.
Actually, you keep a lot of the brain cells that you have throughout your life, it's just that the brain cells shrivel up, they get a bit smaller; the contacts between each brain cell reduce in number and so they just function a bit more slowly. And that's why, as you get older, you do have problems with just day-to-day tasks and everyday remembering.
But suddenly not being able to understand what keys are for and what glasses are for is a sign that there's a deep underlying confusion that's setting in. And it's when you have that confusion — that is a sign that it's something a bit more malign than just normal, everyday forgetting.
On the first symptoms of Alzheimer's disease
The first symptoms of Alzheimer's are usually mild forgetting, confusion with day-to-day tasks — things like paying the bills, stocking the fridge and a sort of mild confusion. So they're quite subtle. They're the sort of things that people do just experience in normal, healthy aging and they're quite difficult to detect.
That's actually been a big problem in the field; because lots of the old drug trials have failed because — we think — that actually many of the people in the drug trials didn't have Alzheimer's disease. They just had sort of a normal, healthy forgetting. So the early signs are quite mild. It's when it goes to the moderate- to the late-stage symptoms that you really start to see the true face and character of Alzheimer's disease.
On why the onset of Alzheimer's is often described as an "attack"
In Alzheimer's disease, there is a huge buildup of these sticky clumps of proteins that we call plaques and tangles. In an Alzheimer patient's brain, the brain is literally littered with plaques and tangles. ...
The brain is essentially under attack by the presence of these toxic proteins. And we know that also once Alzheimer's starts, the immune system kicks in. When the immune system kicks in, you get ... inflammation, which actually makes the whole process much worse in many ways. And so the brain cells are sort of struggling to stay alive. The immune system, to begin with we think, tries to heal the brain — tries to remedy the situation and clear away the plaques and tangles. But for whatever reason it seems to fail.
So it very much can be seen as an attack in the sense that there are these bizarre buildups of these strange proteins that seem to be damaging brain cells to a massive degree.
On the current medication for Alzheimer's disease
The current medication for Alzheimer's disease is approved, essentially, because it's better than nothing. There's nothing else at the moment. ... These drugs were pioneered in the '70s and '80s and they treat the symptoms, as opposed to the underlying biology. And we found that in about 60 percent of patients these drugs will delay the symptoms by about six months to a year. And that is certainly better than nothing. It's certainly good enough for them to be approved and for patients to be taking them; and many of the patients I interviewed for the book said that actually they do feel much better taking these drugs. ... But six months to a year is just simply not good enough.
Inside Alzheimer's
Inside Alzheimer's: A Series On Living With The Disease
On the importance of sleep
We know that sleep has hugely beneficial effects for the brain. When you sleep your brain essentially cleans itself — it uses cerebral spinal fluid to pump away the plaques and tangles that we think cause the disease. And so lots of research is now looking into ways of using sleep to treat Alzheimer's disease, and seeing if a certain level of sleep can somehow affect the symptoms or somehow slow the disease down.
On how research into neural stem cells may affect Alzheimer's treatment
There is a lot of really exciting research coming out now into neural stem cells that suggests that actually there are populations of cells in the brain that may provide regeneration, that may actually give birth to new neurons in the brain. And some scientists think that if we can figure out where these populations of neural stem cells are — and if we can figure out what the biochemical and genetic messages are that activate these cells — that we can develop a drug to switch those on, essentially, to allow the brain to heal itself. So it's a very exciting field at the moment, because a lot is happening.
Sam Briger and Mooj Zadie produced and edited the audio of this interview. Bridget Bentz and Molly Seavy-Nesper adapted it for the Web.
In Pursuit of Memory: The Fight Against Alzheimer’s – review
Joseph Jebelli’s personal study of a disease that has reached epidemic proportions offers the latest research – but not much hope
Robert McCrum Robert McCrum
Mon 29 May 2017 02.00 EDT Last modified on Wed 21 Mar 2018 19.51 EDT
Shares
191
Comments
18
Alzheimer’s disease in the cerebellum of a human brain.
Alzheimer’s disease in the cerebellum of a human brain. Photograph: George Musil/Getty Images
The human animal derives its humanity from language and memory. What are we, without memory ? The short answer is: wild beasts.
Memory gives us personality, emotional intelligence, family relations, and community. Memory anchors us in space and time. It defines the parameters of existence. Paradoxically, it might even confirm the futility of existence.
Dementia, in the broadest sense, lays an axe at the root of memory, creating that “bare, forked animal”, unaccommodated man. “Keep me in temper,” exclaims King Lear before his final breakdown, “I would not be mad.”
Madness comes in many guises, but the cruellest manifestation that’s hitting the headlines today is the affliction named after the German doctor who first identified its most virulent strain in 1906, Professor Alois Alzheimer.
The biology of the ageing brain remains among the greatest enigmas of neuroscience. For several decades, the German psychoanalytic establishment seized on the mysterious nature of the disease to subordinate “insignificant” biological explanations of dementia to broader, Freudian interpretations. Until the 1960s, Alzheimer’s was at once neglected and controversial. If no one could agree about its fundamental symptoms, many others disputed its causes. Slowly, as a result of improved brain-mapping, and the identification of “plaques and tangles” in the geriatric brain as a source of dementia, Alzheimer’s emerged as the global epidemic we now recognise.
Alzheimer’s has become a new plague, threatening the world’s population with a global strike rate of one every four seconds. In the UK, there are now more people with the disease than live in the city of Liverpool. Six million inhabitants of the EU and 4 million Americans have it, figures that are projected to double by 2030. So bad is the outlook that the WHO has declared dementia a global health priority.
It has become the salient fact of 21st-century life that, with an ageing world population, Alzheimer’s will overtake cancer as the second leading cause of death after heart disease. We’re at a point, writes Joseph Jebelli, at which “almost everyone knows someone – a family member or friend – who has been affected.”
Jebelli, a young British neuroscientist, has greater cause than many to make this claim. As a boy, he watched his grandfather acting strangely, before descending into the abyss of dementia in which he could no longer recognise his family. Jebelli’s testament, In Pursuit of Memory, is a moving, sober and forensic study of the past, present and future of Alzheimer’s from the point of view of a neurologist who has lived with the disease, at home and in the lab, from a very young age.
Sign up for Bookmarks: discover new books our weekly email
Read more
Jebelli’s timely analysis is a reminder that, in recent years, Alzheimer’s or other forms of dementia have not merely devastated the lives of millions, they have destroyed the retirements of Harold Wilson, Ronald Reagan, Charlton Heston, and Margaret Thatcher, killed Terry Pratchett, and claimed Glen Campbell and Iris Murdoch among its victims. The lineaments of this fate were recently dramatised in the Oscar-winning film Still Alice, starring Julianne Moore.
WH Auden once compared death to “the rumble of distant thunder at a picnic”. The stages of Alzheimer’s occur as storm clouds on the horizon of a perfect summer’s day. The initial symptoms – flashes of anger; occasional forgetfulness – are often so slight that even doctors can misdiagnose them. As the disease takes hold, it becomes clear that something terrible is happening to the patient’s brain (repetitive questions; the inability to recognise friends and family).
Finally, as Alzheimer’s ignites in the hippocampus and the entorhinal cortex, episodic memory gets burned away, past and present become forever dissociated, and the patient is at the mercy of cerebral Furies. In this merciless process of dehumanisation, the only means of human communication at the end will be the comforts of touch and possibly some snatches of music.
Julianne Moore as a dementia sufferer in the film Still Alice.
Facebook Twitter Pinterest
Julianne Moore as a dementia sufferer in the film Still Alice. Photograph: Artificial Eye
The story that Jebelli tells of his grandfather’s decline illustrates the tantalising mystery of Alzheimer’s: it’s both highly visible yet agonisingly elusive. Like McCavity, this disease defies all known laws, slipping through the net of neurological inquiry.
The incidence of Alzheimer’s is a lottery. You can live “a decidedly salubrious life”, reports Jebelli, and still get struck down in your 70s, sometimes even sooner, with no obvious cause. In the department of prevention, he takes us through a familiar catalogue of potential risk-factors: stress, diet, exercise, etc. He’s forced to conclude, as every visitor to the catacombs of dementia will eventually acknowledge, that Alzheimer’s “remains an enigma”, a tangle of amyloid plaques, sticky buildups of protein in the brain that continue to resist the investigations of the neurological police.
Here, Jebelli’s own pursuit of answers to his grandfather’s death turns into a fascinating quest at the frontiers of neuro-degeneration. He identifies several key areas of recent research, from cerebral renewal (the implantation of iPS cells) and parabiosis (“reversing the pathological changes in an old animal by bathing its tissue in the blood of a young one”), to the pioneering study of Kuru (a shaking disease found in Papua New Guinea) and the latest research into PCA (posterior cortical atrophy), the variant of Alzheimer’s that afflicted the late Terry Pratchett. In Jebelli’s optimistic summary, “the web of treatment is widening”. At the end of his “pursuit”, he declares: “We are closer than ever to the abolition of Alzheimer’s.”
Not everyone agrees with him, and the dividends of intense neuro-scientific research are painfully modest. From 2000 to 2012, indeed, it’s estimated that about 99% of all newly developed “dementia drugs” failed to pass their clinical trials. For all the tabloid headlines about “a cure for Alzheimer’s”, this goal remains fugitive.
Frustrated by the limitations of neuroscience, some Alzheimer’s experts have begun to argue for an alternative approach. In his Penguin Special on Alzheimer’s, Andrew Lees, an acknowledged expert, focused on a fascinating new genre of Alzheimer’s writing, books by patients at the beginning of their slow fade who can illuminate the experience of losing memory.
Yet even this avenue is contentious. As the Observer reported recently, a new Edinburgh University study, the Prevent Project, suggests that Alzheimer’s may not be the disease of memory that Jebelli describes.
In truth, there has been no shortage of neuroscientific investigations, but it’s hard to resist the conclusion that these have been blind alleys. By contrast, the phenomenology of losing personal cognition (the territory explored by the late Oliver Sacks) offers, from some points of view, a more fruitful cerebral exploration. It might at least give comfort, if not hope.
• In Pursuit of Memory by Joseph Jebelli is published by John Murray (£20). To order a copy for £17 go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99