WASHINGTON, DC – When US Senator Amy Klobuchar’s father, the late Jim Klobuchar, was diagnosed with Alzheimer’s disease, the noted Minnesota newspaper columnist gradually stopped recognizing her – although he retained “a kind of savoir faire” to the very end with words, jokes and storytelling based on the decades of “lines enmeshed in his memory,” she recalled.  

In the United States, one in every three seniors will be diagnosed with Alzheimer’s. The disease affects roughly 55 million people globally and is the seventh leading cause of death. 

“But it’s not just the numbers. It’s the fathers and mothers, it’s the brothers and sisters,” remarked Klobuchar, (D-MN), who recounted the story of her father’s illness at a high-level event here this week, organized by the Davos Alzheimer’s Collaborative (DAC) together with Scientific American. 

The meeting of the collaborative, a Swiss and US-based foundation launched at the World Economic Forum in 2021, brought together some 100 Alzheimer researchers and front-line clinicians as well as policymakers and industry and civil society advocates, to share progress on new innovations in diagnosing and treating the disease – as well as challenges faced in getting those same innovations into healthcare systems globally. 

But the event, co-hosted by Scientific American, also was marked by moments of personal reflections, both comic and tragic. Not only Klochubar, but other speakers in the room referred to their own experiences in dealing with family members with Alzheimer’s disease – what Senator Susan Collins (R-ME) termed “the defining disease” of her generation. 

Joining together across borders and cultures  

And while much of the attention around Alzheimer’s so far has been in the United States and other countries of the global north, the disease is a growing problem worldwide, as populations age and people live longer, but not always healthier lives. 

Researchers predict that lower and middle income countries will soon bear the brunt of Alzheimer’s disease – much as they already do with regards to other noncommunicable diseases. 

And as in all disease research, a global approach can help identify new therapies more effectively and cost-efficiently.

“Rather than succumb to despair, what we’re doing is joining together across borders, cultures, and languages to chart a future for the world of prevention, effective treatment, and one day, a cure,” said Collins, who lost a brother to Alzheimer’s. Along with being vice-chair of the powerful Senate Appropriations Committee, Collins is also founder and co-chair of a Congressional Task Force on Alzheimer’s disease. 

“I want to speak on behalf of families…50 million families worldwide are struggling with this disease.” said DAC chairman George Vradenburg, who first launched the initiative in response to a challenge by WEF founder and executive director Klaus Schwab.  He said that DAC was committed to “including researchers, clinicians and families in this fight globally, ensuring that no corner of the world is left untouched by our efforts.” 

Added Collins, “We need a global approach modeled on what we’ve done with AIDS, tuberculosis, and malaria. And we know that that kind of global collaborative approach to bring the research directly to a broader spectrum of countries and communities will remove long standing barriers to care and help us eliminate disparities.” 

“A transformative moment”: Novel diagnostic tests, gene sequencing, and precision medicine

Early Alzheimer’s disease research was rather akin to “staring up a cliff,” said former US National Institutes of Health (NIH) director Elias Zerhouni, one of the other speakers at the event. Now, however, the world has reached a turning point where, “we can truly have a global approach.”  

Improved genetic sequencing, the advent of digital and biological markers, novel drugs, and a more open mindset to alternative hypotheses have seen Alzheimer’s disease research leap into a new era. 

“We have an explosion of ways to test for Alzheimer’s disease,” remarked Suzanne Schindler, Associate Professor of Neurology at Washington University School of Medicine. Among them are blood tests that can measure up to 5,000 various proteins- a method faster and less invasive than dreaded spinal taps. 

Other panelists shared this optimism, citing the use of amyloid pet-scans and other diagnostics to more accurately assess Alzheimer’s progression in patients.  Genetic sequencing too is cheaper, a marked change since the early days when researchers remained in the dark about the potential genetic drivers of the disease.  

‘More than buildup of amyloid plaques’ 

With these tools comes an understanding that “the disease is more than just about build up [of amyloid plaques],” commented Jeffrey Burns, Professor of Neurology at University of Kansas Medical Center. 

New research into disease risk factors is moving beyond conventional descriptions of amyloid plaques and tau protein pathways to include research into inflammation and lifestyle factors. 

The future of prevention, he speculated, will increasingly lie in more holistic lifestyle approaches undertaken in tandem with medications. “We don’t just give patients with heart disease medication, we tell them to modify their diet, their lifestyle.

“I believe we will prevent the disease,” Burns added. 

Early Alzheimer’s detection remains a missing link

One major challenge is the need to move new knowledge into hospitals and health clinics; currently it can take as long 17-20 years for innovations to get into clinical practice due to outdated models of care. 

“We are building bullet trains, but running them on the same wooden tracks,” said Dr Phyllis Ferrell, DAC advisor on healthcare systems preparedness. 

Too often, practitioners still take a “wait and see” approach, while symptoms of cognitive impairment go unrecognized or undiagnosed until much later in the disease course. She urged a shift to a more preventative approach with screenings and help manage cognitive symptoms early.

“Why did it take four separate visits to get my dad an inconclusive diagnosis?” Ferrell asked.

“Early detection gives people the time to focus on what matters most to them,” she added. “It provides an opportunity to implement positive lifestyle changes and address risk factors, pursue treatment options and/or enroll in a clinical trial.”

Getting new innovations into practice 

Ferrell also bemoaned the frustration families feel over the lack of access to new diagnostics and therapeutics – in the wake of progress made in research. 

In 2010 the NIH funded Alzheimer’s disease research to the tune of $400 million annually. Fourteen years later, the annual investment is now close to $4 billion, she noted. 

Yet, despite this influx of funding for research, there’s a huge gap emerging in affordable and available drugs. 

“We have innovations that are ready, but are not being used,” she said, adding “Yes, to research, but we need to do things today. Let’s go after clinically ready innovations.”

Staying the course on research 

At the same time, more research into the disease remains critical to find even more effective preventive strategies as well as possible cures.  This means building specimen repositories across the country, performing skin tests for early detection of Alzheimer-related protein abnormalities traditionally only detectable from brain biopsies, and other research. 

Zerhouni called it breaking the “taboo of the brain” – an area of human physiology where research was historically inadequate. “This is a frontier that has to be broken.”

For many years, such research was impeded by social taboos around Alzheimer’s disease. “People used to just call it senility,” said Collins, who has been the leading champion of Alzheimer’s research and action on Capitol Hill for over a decade. 

Collins last year initiated bipartisan legislation in the US Congress to help maintain the funding for Alzheimer’s research, as well as supporting initiatives to bring down the cost of new drugs in the US for Alzheimer patients. At $345 million billion a year, the disease is currently the most costly disease in the nation to treat, she says. 

A global economic burden 

Globally, Alzheimer’s disease also presents an enormous economic burden – costing the world’s economies some $1.3 trillion, in terms of medications as well as care – much of it unpaid, noted Population Council economist Arindam Nandi.  

In the past, economic data came mostly from high income countries, Now, data is available from lower and middle-income countries like India and China. 

“These data depict a worrying trend; the percentage of unpaid care is higher in these countries, meaning that caregivers are not able to get other jobs, decreasing economic output,’ he said. 

 

Nandi also mentioned that predictive models forecast the shifting burden of disease from high income countries to middle and low income countries. “We don’t know how these populations will fare.” Investments in these countries are needed to strengthen their overall public health measures. 

Meanwhile, the US and high income countries can learn from the experiences of low and middle income countries, which often are first to devise lower-costs methods for detecting and treating diseases.

DAC, for instance, funded an Early Detection Flagship program involving six countries, including the US, Scotland, Jamaica, Japan, Mexico and Brazil. They participated in a pilot designed to increase access to early detection and diagnosis of the disease through the use of innovative new screening tools. 

“One of the things I loved [about the Early Detection program]  was watching the US and high resource countries learn from LMICs,” Ferrell observed. “As the founder of the Brain and Mind Institute of Aga Khan University once said, ‘when it comes to Alzheimer’s disease we are all developing nations.’ “

Image Credits: Getty Images, Pixelmestudio/DAC, National Institutes on Aging , UCLA , S. Samantaroy/HPW.