The world’s biggest health challenge this century is not cancer, heart disease or stroke; but dementia, according to Lenny Shallcross, executive director of the World Dementia Council, which held its annual Dementia Summit in Tokyo on 18 October 2019. Globally, about 50 million people suffer from dementia, and in OECD countries one in three people die with it.
Dementia exacts a terrible human cost. “We’re talking about a disease that is taking away your retirement, that’s taking away the opportunity to spend time with your grandchildren, that’s taking away the pleasure of spending your days with your loved ones,” says Shallcross. “That is a reason to be angry. I think this dementia movement needs to be driven by anger.”
Bridging the public–private divide. Husseini Manji (centre) and Rami Suzuki (left) of Janssen discuss tackling dementia with Lenny Shallcross (right) of the World Dementia Council.
And the cost is not just to the sufferer. “The thing about dementia is that no-one travels that journey alone,” says Shallcross. “It affects the entire family, it affects neighbours, it affects the community.”
To compound the problem, dementia is often accompanied by stigma. “It’s bad enough to have the illness, but on top of that there’s the stigma, and sufferers are often shunned,” says Husseini Manji, global therapeutic leader of neuroscience at Janssen, the Pharmaceutical Companies of Johnson & Johnson.
Dementia also poses a huge economic burden, which is set to worsen. “There’s an impending tsunami of Alzheimer’s disease incidence. In a few years, it’s going to cost society USD$2 trillion,” says Manji. “Countries are starting to wake up to the fact that this is not only going to have a devastating effect on healthcare, it’s going to have a devastating effect on countries.”
Too big to tackle alone
There is a feeling among the dementia research community that the condition has been neglected compared with other more conspicuous health challenges. Comparisons are often made with cancer research, which has seen remarkable progress over the last half century, resulting in today’s cancer survival rates of about 50%. “Partly because of the brain’s complexity and partly because of underfunding and neglect, we’re not where cancer is today,” notes Manji.
But there is a fresh feeling of optimism. “We’ve made progress in many other fields of medicine. There’s no reason why we can’t do it here,” says Manji.
As the magnitude and complexity of the crisis is becoming more apparent, key players are increasingly combining forces through collaboration, including clinical samples and data sharing. “The light bulb has gone on that this problem is so complex that we can’t succeed unless we share,” says Manji.
“Clinical samples and data sharing might not sound very exciting, but what you are talking about is accelerating progress towards developing treatment that will benefit millions of people,” adds Shallcross. “A dull-sounding word — sharing — can have huge consequences.”
An important private– public clinical samples and data sharing initiative was announced at this year’s Dementia Summit. Three international players — Alzheimer’s Drug Discovery Foundation, Shionogi and Janssen — have collaborated to provide access to samples and data from a clinical trial (for more information on this, see press release1). “This initiative is telling the world that we’re together in this and we’re going to fight the disease,” says Rami Suzuki, head of medical affairs at Janssen Japan. “Sharing will become the norm. It will allow companies and academia to test different diagnostic and treatment paradigms.”
Slices of a brain affected by Alzheimer’s disease obtained using computer-aided tomography. © SCIENCE PHOTO LIBRARY - ZEPHYR./GETTY IMAGES
Improved diagnosis with new biomarkers
Another source of encouragement has been the discovery of biomarkers for Alzheimer’s disease. “Biomarkers are one of the transformational things happening in this field,” says Shallcross. Positron-emission tomography (PET) imaging can reveal amyloid and tau build up in the brain, clear indications of the disease. Apps for mobile devices can detect cognitive decline even before a person becomes aware of it, while voice analysis can indicate the early stages of Alzheimer’s.
Janssen is even collaborating on research to look at using biomarkers in the retina that can be observed by an eye exam. “Imagine that,” says Manji. “At an annual eye exam, you’ll be told ‘you’re fine’ or that there’s a need to monitor more carefully. It will make a huge difference.”
“If you go back 10 or 15 years, we couldn’t even say for sure that you had Alzheimer’s because it couldn’t be confirmed until autopsy,” says Shallcross. “We will soon be at the point where biomarkers will begin to be used in the health systems, within primary care. We’re not there yet, but we’re not that far away.”
Lenny Shallcross is excited about the progress being made in identifying biomarkers for dementia.
The big hope
The big hope, of course, is that treatments for Alzheimer’s disease will emerge. Currently, there are drugs that can provide limited alleviation of symptoms in some patients, but the development of a treatment that slows or even cures the condition will be a game changer. Recalling the difference that the development of a treatment made to those with HIV, Shallcross says: “We’re on a trajectory that will, at some point, result in treatments. And that is a message we need to keep driving because what will get more people coming into this space is hope.”
Manji concurs: “We are in the trenches, but I think there are good reasons to be optimistic. It’s really about hope.”
One of the reasons for this optimism is the recent advances in understanding the science behind the disease, notes Shallcross.
Rami Suzuki anticipates the day when dementia will become a treatable condition.
A strong track record in neuroscience
It is this hope that inspires researchers at Janssen. “Janssen has a robust legacy in advancing research and developing treatments for people living with neurodegenerative disorders, which has given us a seat at the table with global leaders and organizations in the ongoing fight against Alzheimer’s disease,” says Manji. “We have one of the strongest research and development programs in the industry.”
The conference was held in Japan, where dementia is a particularly big social concern because more than 25% of its population is now over 65, and the average population age is anticipated to peak in around 2040. Janssen is especially active in Japan for precisely that reason. “We’ve been working tirelessly to increase awareness of this important disease in Japan by holding regular webinars, roundtables and academies,” says Suzuki. “Ultimately, our vision is to create a future where disease is a thing of the past. Imagine what society will be like if we are to be able to prevent dementia. Economically, it will be such a bright future with patients and carers able to lead healthy, productive lives.”