We can cure Alzheimer’s – if we stop ignoring it | Joseph Jebelli


Given focus and funding, Alzheimers will yield to science and reason, writes neuroscientist and author Joseph Jebelli

The terror of Alzheimers is that it acts by degrees, and can therefore bewilder family members as much as its victims. Those who first notice the onset of Alzheimers in a loved one tell of forgotten names and unsettling behaviour, of car keys found in the fridge and clothing in the kitchen cabinet, of aimless wanderings.

Naturally, they want to understand the boundaries of normal ageing and whether these are being crossed. Often, the answer arrives when theyre greeted as complete strangers, when the patients mind becomes irrevocably unmoored from its past. The disease is terrifying for its insidiousness as well as its long-term manifestations.

Fear partly explains why Alzheimers has been ignored for so long. Yet it is now the leading cause of death among the oldest people, and according to Professor Sir Michael Marmot, an expert in health inequalities, it could be an important part of the stagnation in increases in life expectancy since 2010 that he has identified.

As a researcher, I have been struck by how many patients speak openly about their condition only after receiving a diagnosis. I knew something wasnt right. Sometimes I dont know what day of the week it is or what I have to do, one newly diagnosed patient told me. I look in my calendar but then I think: why am I looking at this? My husband was the one who made me see a GP. I was too frightened. I thought I might have it but I didnt want to hear it.

My grandfather suppressed his concerns and agreed to see a doctor only after being hassled by his five children. By that point he had forgotten where he lived and was mistaking his wife, Afsana, for his first wife, Parry. Raising the issue with him wasnt easy; hed insist his memory was fine, and then happily discuss the health concerns of others. When faced with the stark reality of dementia, patients can retreat into themselves and some opt for silence.

But another factor is undoubtedly at work. For most of history, Alzheimers was a deeply taboo subject; those who had it were mad or just foolish. Although we think of Alzheimers as a modern disease, early accounts of dementia were described by the Roman philosopher Cicero and the Greek physician Galen. And yet only in the past two decades have we begun to realise Alzheimers is an affliction no less urgent than cancer or stroke.

And if people with other diseases of old age deserve recognition and action, then so do people with Alzheimers. The crisis around the funding of social care, and the attention focused on this during the general election campaign, has only increased the sense of urgency.

Where memory used to be viewed as a spectral, intangible quality, impossible to pin down, Alzheimers research now demonstrates the precise opposite that memory is a material phenomenon, an exquisite product of healthy brain cells that appears to reside in a network of durable connections between those brain cells. To say that this needs protecting is an understatement. Memory forms an individuals autobiography. It defines who we are. As the noted cognitive neuroscientist Michael Gazzaniga once said: Everything in life is memory, save for the thin edge of the present.

We know now that a therapy must be given in the very early stages of the disease, before symptoms appear. Photograph: Alamy

This is why the more I consider the governments approach to Alzheimers the more frustrated I become. Alzheimers costs the UK an estimated 26bn a year the combination of spending on healthcare, social care and lost earnings and taxes from people who have taken up caring roles in place of paid employment.

This is more than cancer, heart disease and stroke combined. And yet, astonishingly, only a fraction of 1% of that amount is spent on research. A hallmark of the NHS constitution is to improve health and wellbeing. In his 1939 address as president of the American Psychiatric Association, Richard Hutchings warned: Our institutions promise to become in time vast infirmaries with relatively small departments for younger patients with curable disorders.

Indeed, if things continue this way, epidemiologists estimate that the total number of Alzheimers cases will double every 20 years, making dementia the next global pandemic. In that event, the current 850,000 patients in the UK would represent no more than the tip of a vast, society-crippling iceberg.

Increasing the overall health budget is an option. A smarter strategy would be to reassess how funding is allocated in the first place. Cancer now causes fewer deaths each year than Alzheimers, but receives on average 13 times more funding. Eliminating cancer is vital, but we shouldnt pour all our efforts into one pandemic only to then be met by another. Given the advances made in understanding Alzheimers the signs and symptoms, the causes and risk factors, the genetics and neurobiology the number of therapies awaiting discovery is limitless.

The task of developing such therapies lies with the pharmaceutical industry. The problem is that many in the industry feel uneasy: between 2000 and 2012, in more than 400 clinical trials, only one drug was approved (Namenda, a drug similar to the Aricept generation of drugs, and similarly insufficient). In total, Alzheimers drug candidates have racked up a lamentable 99.6% failure rate even higher than cancer, at 81%. The recent failure of Eli Lillys solanezumab and Merck & Cos verubecestat hasnt helped.

But things are changing. We know now that a therapy must be given in the very early stages of the disease, before symptoms appear. And so Lilly, Merck and other companies are now testing drugs on patients in the newly defined preclinica phase of Alzheimers, with results expected by 2025. The role of academic researchers and patient advocates in all this is to keep championing the issue, to keep applying pressure as well as encouragement.

The word incurable is often used to describe Alzheimers. I have never liked the term because it is freighted with hopelessness. And it is wrong. Alzheimers will yield to science and reason; it will one day be as treatable as diabetes and HIV. The choice in front of us is how many generations we are willing to lose before that day comes.

The remarkable patients I met during my research, each teaching us something new and profound about the disease, deserve our action, not our sorrow. It is time to abolish their fear and silence. Its time to foster a seriousness of purpose that defeats Alzheimers once and for all.

Read more: www.theguardian.com


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