Dementia robs us of everything that matters. Our memories. Our connections. Our story. Every three seconds, another person in the world hears the devastating news that they have dementia. No wonder, then, that it is the most feared condition among people aged over 55.
But, after decades of relentless research across the globe, that is all set to change.
Investments in dementia research are finally leading to breakthroughs, as life-changing treatments that may slow the progression of Alzheimer’s come within close reach. And we’re understanding more and more about how we can reduce our risk of developing dementia. This progress is mirrored by active and growing investment in drug development in the field of neurology around the world, which is fueling further innovation and drug discovery.
For a field that has seen no progress since the 1990s, when symptomatic drugs in the form of cholinesterase inhibitors were introduced, it certainly does feel that the time to turn the tide on this devastating condition has finally arrived.
The power of recent scientific discoveries, coupled with lessons from a litany of past research failures, means there is now a new sense of urgency on both sides of the Atlantic. We now need to see action on two fronts: to reduce the number of people affected by dementia in the future, and to minimize its impact on those who do develop the condition.
But this action demands a seismic shift in the way our health systems approach dementia care. This will take time and resources, so health systems and physicians need to be supported to manage this change.
The current state of play
In the past year, we’ve seen the arrival of the Alzheimer’s drug lecanemab (Leqembi) into U.S. healthcare and more recently, in Japan and China. A second Alzheimer’s drug, donanemab, is rapidly following suit, and, regulatory decisions from several countries are expected over the coming months.
Although the benefits of these drugs are modest, and with significant side effects for some, it nonetheless marks the arrival of a new wave of treatments that can slow the course of Alzheimer’s disease rather than just treating its symptoms. It’s a new dawn for dementia, signaling a step-change in the way it will be perceived and diagnosed.
Despite this success, we don’t have a straightforward path ahead to rapid, equitable access to these drugs once they are licensed. Work supported by the Davos Alzheimer’s Collaborative is highlighting shared challenges while acknowledging country-specific obstacles linked to healthcare infrastructure, demographics, and clinical practices. For many countries, the current state of play is going to make accessing these treatments practically impossible in the short term.
Solving these issues will be impossible without a change in public attitudes and expectations. Until very recently, a diagnosis of Alzheimer’s offered no hope. While receiving a diagnosis is important for the individual and their loved ones to understand what is happening in the brain, make future plans and have the opportunity to participate in research, a lack of effective treatments has left many wondering “what’s the point?”
There also remains considerable fear and stigma around dementia. Many people and communities don’t understand that dementia reflects physical diseases of the brain, which can be overcome by research. Recent insight work by Alzheimer’s Research U.K. suggests that many people struggle to name dementia’s effects, with less than 5 percent of people aware that it can cause a loss of body and motor control, stop people from being able to communicate, and create difficulty managing finances. We cannot accept that so many people see dementia as an inevitable part of aging any longer, and improving understanding is vital to ensuring people can benefit from new discoveries. Alzheimer’s Research U.K.’s Dementia Community Champions initiative aims to do exactly this, by uniting South Asian community members and empowering them to share information locally, reduce stigma, and enhance research representation.
This lack of awareness has also dampened the appetite for innovation. New technologies that could help diagnose dementia have struggled to be adopted into clinical practice. Within the U.K., the National Institute for Health and Care Excellence (NICE) clinical guidelines for dementia are well established, yet the cognitive tests recommended for primary care professionals are quite basic. This discourages the implementation of more innovative cognitive tests that might be more sensitive, offer more insight or be more culturally appropriate.
This means that many people don’t get a diagnosis or are simply told they have “dementia,” a general term used to describe a set of symptoms, rather than the underlying disease causing the symptoms, such as Alzheimer’s or vascular dementia. In England, one in three people living with dementia never receive a diagnosis, and it can take up to four years for someone under 65 to receive a diagnosis of young-onset dementia.
Further compounding this problem is a profound lack of motivation to invest in cutting-edge diagnostic technology from industry, governments, and healthcare systems. Why commit resources to new, expensive tools when, sadly, a historical lack of effective treatments means that a person’s Alzheimer’s will progress regardless. This has left healthcare systems worldwide grappling with a glaring void in their ability to offer an early and accurate diagnosis.
Currently, the U.K.’s National Health Service (NHS) recommends using lumbar punctures and PET scans to detect and diagnose Alzheimer’s. These tools are effective for detecting amyloid—the hallmark protein of Alzheimer’s. But it’s estimated that only 2 percent of people can currently access such tests because of their limited availability. England has the lowest number of PET and MRI scanners and the second-lowest number of dementia specialists, including neurologists, old-age psychiatrists and geriatricians, per capita among the G7 countries.
That said, these issues are global. The Alzheimer Society of Ontario says that the introduction of a drug like lecanemab could cause diagnostic wait times in the area to skyrocket to seven and a half years, with a lack of specialist staff, biomarker testing, lumbar punctures, and PET scanners making this inevitable. In France, less than 10 percent patients with suspected early-stage Alzheimer’s are offered a lumbar puncture, making it difficult to identify the eligible population for these new drugs.
Potential drug-specific challenges also exist. In the donanemab trials, a radioactive agent, flortaucipir, identified tau, another Alzheimer’s hallmark protein, in PET scans. Regulators might require a tau-PET scan as part of donanemab’s approval. However, while the FDA approved flortaucipir, now being sold by Eli Lilly as Tauvid, it lacks reimbursement in the U.S. and isn’t accessible in many countries. It’s uncertain whether a test that detects tau in cerebrospinal fluid (CSF) or alternative methods could substitute for tau-PET if donanemab gains approval.
No country possesses adequate diagnostic infrastructure for the potential surge in demand from emerging treatments. We are likely going to see more people coming forward for a diagnosis, at a younger age and with less obvious symptoms, as well as those concerned about their risk of developing dementia in the future. From primary care physicians to specialist dementia services, healthcare systems worldwide must evolve, fostering interdisciplinary collaboration, embracing technology, and cultivating innovation to create new clinical pathways and equip physicians with the skills and infrastructure needed for this changing landscape.
Early diagnosis is key
Drugs like lecanemab and donanemab target and remove the amyloid protein that builds up in the brain as Alzheimer’s disease develops and progresses. These drugs work best for people who are in the earliest stages of disease, when they are experiencing mild cognitive impairment, before symptoms have affected their ability to live independently
For these treatments to reach their full potential, our health systems need to be equipped with sensitive, scalable and speedy tests that can not only diagnose individuals who are in the early stages of Alzheimer’s, but can pinpoint those who are at a higher risk of developing the disease.
Emerging tools and technologies, like digital cognitive tests that are more sensitive, mean physicians can now detect early signs of diseases like Alzheimer’s, surpassing traditional pen-and-paper tests. However, healthcare systems like the NHS lag in implementing these technologies. With the potential approval of lecanemab in the U.K. soon, the NHS must rapidly increase CSF testing access, from 2,000 to 20,000 annually to meet the specific needs of the U.K. population.
It’s crucial to acknowledge that cognitive tests and molecular diagnostics like blood tests must become more inclusive. For instance, cognitive tests conducted in a patient’s second language may yield less accurate results, and amyloid levels can vary among different ethnicities or because of common co-morbidities within specific ethnic groups.
While assessing cognitive changes is essential, it’s just one part of diagnosing Alzheimer's. Measuring brain amyloid levels, on the other hand, cannot be accomplished through cognitive tests alone; it necessitates a PET scan or CSF sample via lumbar puncture. The current lack of global diagnostic capacity means health systems are simply not fit for purpose nor for the future of dementia care, and this needs to change.
Developing a new clinical pathway
Two decades ago, the field of multiple sclerosis was presented with an opportunity that is similar to what we have today in dementia. MS was once a condition without any effective treatments, but thanks to research, it is now something people can live with while enjoying a good quality of life. This required the development of new pathways, rapid assessment units, and upscaling of multidisciplinary teams and nurse specialists. These changes improved outcomes for all patients, not just those eligible for the specific treatment, and provided the infrastructure to allow for the rapid adoption of new treatments as they became available.
Dementia is now going through the same gearshift, and thankfully in the next decade we will be seeing a very different picture to today. But action needs to begin now, and this will require concerted efforts from across a broad base of practitioners from primary and community care, as well as sustained investment.
With the arrival of lecanemab already underway in the U.S. and Japan, health systems urgently need to increase access to CSF sampling from lumbar punctures and invest in greater provision of PET scans to determine the eligible patient population for this first wave of new treatments.
Health systems must also be supported to embrace innovation in the form of digital cognitive tests, to be rolled out as triaging assessments in primary care, before those who are identified as at risk are offered more in-depth clinical assessments such as CSF sampling via lumbar puncture or PET scanning.
Against this backdrop, diagnostic blood tests for measuring amyloid and tau levels are advancing rapidly. Some are already in pilot programs in the U.S., Europe, and parts of Scotland. Within the next five years, these tests are expected to become both scalable and more cost-effective than PET scans or lumbar punctures and could be offered to people in local healthcare settings or even as a finger-prick test at home.
Considerable capacity-building is needed for these tests to transition from labs to healthcare settings, including addressing challenges like freezer storage, cold supply chains, staffing, and regulatory approvals. But this requires resources and infrastructure that don’t necessarily exist right now.
New tools and techniques also require new training. A survey conducted by Alzheimer’s Research U.K. revealed a confidence gap among physicians when using nonroutine diagnostic tests. The results showed greatest access and clinical confidence in the interpretation of MRI scans, while PET scans and CSF tests have the least access and the least confidence in interpretation. This creates a cycle where physicians may hesitate to champion the integration of these novel diagnostics or opt out for their early adoption. To drive change, we must prioritize supporting physicians in adapting their clinical practices.
Strong public messaging is essential alongside these efforts. Different cultures and ethnic groups have varied perspectives on dementia, presenting unique opportunities and challenges for ensuring universal access to diagnosis. Effective public messaging and engagement are crucial for encouraging individuals to recognize Alzheimer’s early signs and symptoms and empowering them to seek assessment.
Moving from pilot, to policy, to practice
The journey towards the most recent breakthrough—an anti-amyloid treatment for Alzheimer’s disease—has been a long and difficult one. Today, however, we stand at a tipping point in dementia research.
Across the globe, pockets of innovation are propelling us closer to a reality free from the fear, harm and heartbreak of dementia. Initiatives like the Davos Alzheimer’s Collaborative Healthcare System Preparedness Learning Laboratory Meetings, which invites experts to share progress with their peers around the globe so that all may benefit from learnings, will serve as invaluable conduits for sharing insights, identifying trends, and fostering a community of best practices as new dementia treatments reach patients.
For the first time, genuine hope permeates the field. While we acknowledge significant challenges and uncertainties, we also see tangible opportunities to begin transforming the lives of those affected by dementia. In the midst of it all, we must seize this chance and ensure that our global healthcare systems are poised to embrace this new era.
This article is part of The New Age of Alzheimer’s, a special report on the advances fueling hope for ending this devastating disease.