The disease is now the leading cause of death among the oldest people. Given focus and funding, however, Alzheimer’s will yield to science and reason
• Joseph Jebelli is a neuroscientist and author
he terror of Alzheimer’s is that it acts by degrees, and can therefore bewilder family members as much as its victims. Those who first notice the onset of Alzheimer’s 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 they’re greeted as complete strangers, when the patient’s 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 Alzheimer’s 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.
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 wasn’t easy; he’d 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, Alzheimer’s was a deeply taboo subject; those who had it were mad or just foolish. Although we think of Alzheimer’s 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 Alzheimer’s 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 Alzheimer’s. 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, Alzheimer’s 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 individual’s 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.”
This is why the more I consider the government’s approach to Alzheimer’s the more frustrated I become. Alzheimer’s 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 Alzheimer’s 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 Alzheimer’s, but receives on average 13 times more funding. Eliminating cancer is vital, but we shouldn’t pour all our efforts into one pandemic only to then be met by another. Given the advances made in understanding Alzheimer’s – the signs and symptoms, the causes and risk factors, the genetics and neurobiology – the number of therapies awaiting discovery is limitless.
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 Alzheimer’s, 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 Alzheimer’s. I have never liked the term because it is freighted with hopelessness. And it is wrong. Alzheimer’s 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. It’s time to foster a seriousness of purpose that defeats Alzheimer’s once and for all.