A Global Approach to Tackling Alzheimer’s

Value & Outcomes Spotlight has partnered with PharmaBoardroom to share content that is relevant to the global HEOR community. This interview was originally published on the PharmaBoardroom website in April 2025. For more information and other stories like this, visit PharmaBoardroom.

Interview With Paola Barbarino, CEO, Alzheimer’s Disease International

Paola Barbarino, CEO of Alzheimer’s Disease International, shares her insights into the growing global challenge of the disease and the urgent need for action across all income settings. In this interview, she discusses the importance of postdiagnosis support, the burden on caregivers, the impact of stigma, and the role of governments in creating Alzheimer’s-inclusive societies. Barbarino also calls for a unified, collaborative approach to tackling the disease worldwide.

“When Alzheimer's Disease International approached me to lead the organization, I thought this was incredibly important, not only because I had not previously worked in healthcare, but also because I was genuinely curious to learn more about the field.”— Paola Barbarino

PharmaBoardroom: You started your career in education and the arts before moving into the field of Alzheimer’s advocacy. What led you to this transition and what fuels your passion for dementia awareness and policy change?

Paola Barbarino: I have explored various fields because I have always been interested in many areas, particularly working in the international space. When Alzheimer’s Disease International (ADI) approached me to lead the organization, I thought this was incredibly important, not only because I had not previously worked in healthcare, but also because I was genuinely curious to learn more about the field. My interest was further intensified by personal experiences with Alzheimer’s and dementia affecting friends and family members. I recognized this as an extraordinary opportunity to join a significant nonprofit at a very interesting time.

Since joining, I have grown increasingly passionate in the space because ADI serves as the global voice for people who are among the least privileged and face the toughest circumstances. When I speak at global meetings, I always remember that I am representing individuals who cannot speak up for themselves. This responsibility fuels my commitment. I believe the group we represent is one of the last frontiers in exclusion. Many still dismiss older age, and I have observed ageism at every level of society. We are facing a massive issue with the global aging population while most governments worldwide continue to ignore the problem.

PB: What you see today as the biggest gaps when it comes to addressing Alzheimer’s?

Barbarino: I refer to our 2024 World Alzheimer’s Report on Global changes in attitudes to dementia, which revealed that 65% of healthcare professionals believe that dementia is a normal part of aging. This statistic demonstrates that many people around the world still do not understand the true challenges posed by Alzheimer’s and dementia. New treatments and diagnostics are emerging, and hope is on the horizon for the patients and families affected. However, widespread misconceptions about the disease persist, presenting a major challenge in our current healthcare ecosystem.

When it comes to allocating the proper resources to this area, I have participated in many discussions about cost-benefit analyses. I fully understand the necessity of these assessments as a taxpayer, but I find it difficult to grasp why governments can make such decisions for certain disease areas but seem reluctant to invest in Alzheimer’s disease. Often, it appears that decision makers believe that older individuals are less deserving of investment, which is not acceptable. This issue is compounded by the fact that ageism is present not only among the general public, but also among healthcare professionals. I recall a report from the Organisation for Economic Co-operation and Development that noted over the course of a doctor’s training, only 12 hours are dedicated to education on dementia and Alzheimer’s. This is a serious concern because these professionals are responsible for making decisions about cost benefits, medicine prescriptions, and the implementation of diagnostics. Addressing these educational gaps is essential for improving outcomes in Alzheimer’s care.

"Only 12 hours are dedicated to education on dementia and Alzheimer’s. This is a serious concern because these professionals are responsible for making decisions about cost benefits, medicine prescriptions, and the implementation of diagnostics."

PB: What are the key barriers to the early detection of Alzheimer’s? In your perception, how equipped are healthcare professionals to recognize and diagnose the disease?

Barbarino: I have mentioned that 65% of primary care doctors consider Alzheimer’s or dementia as an inevitable consequence of aging. And yet, in our 2024 report, we found that 90% of the general public would seek a diagnosis if a disease-modifying treatment were available. This situation is much like the chicken and egg dilemma because every part of the system is interconnected. We cannot address one aspect in isolation—the entire framework needs to move forward together.

Many healthcare stakeholders view Alzheimer’s as a giant cruise ship that cannot be easily redirected, but meaningful change requires a comprehensive approach. We must elevate Alzheimer’s and dementia as a policy priority, improve risk assessment and prevention, enhance early diagnosis, and raise general awareness. In addition, treatment, care, support, and end-of-life palliative care all need to be addressed simultaneously. The current healthcare systems were not designed for these challenges and must be fundamentally changed to accommodate the evolving needs of an aging population. Even when a diagnosis is made and treatment options are limited, there are many steps that can be taken to improve a person’s quality of life.

"We must elevate Alzheimer’s and dementia as a policy priority, improve risk assessment and prevention, enhance early diagnosis, and raise general awareness."

PB: How critical is the role of screening programs and education initiatives in improving Alzheimer’s diagnosis rates?

Barbarino: Recently, I attended a screening program in England designed for older people. The program focused on measuring blood pressure, discussing hypertension, and addressing nutritional habits. However, when I asked whether they would assess cognitive health or perform any brain health evaluation, I was told that it was not on their list of procedures. This was shocking to me, especially in a country that prides itself on comprehensive healthcare.

In our 2022 World Alzheimer’s Report: Journey Through the Diagnosis of Dementia, we recommended that people receive assessments at specific age milestones so that doctors may monitor any cognitive decline over 5 to 10 years. Such regular screenings would greatly simplify a timely diagnosis. Unfortunately, even in high-income countries like England, these cognitive assessments are not part of routine practice.

In general, it is rare to see public health campaigns focused solely on Alzheimer’s and dementia; usually, they cover multiple health conditions. As a result, specific initiatives to promote brain health and education remain uncommon although they are deeply needed.

PB: Are there any countries in particular that are leading in the implementation of Alzheimer’s and dementia initiatives? What can ADI and other countries learn from such examples?

Barbarino: I have recently returned from Malta, where the government proudly informed me that they now have respite care programs available for everyone on the island. Although Malta is a small economy with fewer people living with dementia, it is a significant achievement for them to invest in comprehensive respite care, which is critical.

In my home country of Italy, caregivers did not receive government support until about 3 years ago, when, despite having had a strategy in place, the government only started financing the program. This example shows that even advanced economies may still be catching up. In China, a dementia plan was introduced around 3 or 4 years ago, and they are gradually addressing the challenges of a rapidly aging population.

I believe the most advanced example is South Korea. South Korea launched an all-encompassing initiative, often described as a “war on dementia.” They invested significant resources to create a dedicated institute, provided wearables to at-risk citizens, and offered pre-emptive care classes. This comprehensive approach demonstrated that a government-led strategy can have a massive impact. However, even well-established plans are at risk when government priorities and funding change. That is why having a solid plan is crucial—it enables the next government to build on an established baseline rather than having progress evaporate.

Japan’s Orange Plan is another excellent example that has been in place for many years and is a model of consistency. On the other hand, some European countries have experienced challenges. For instance, France once had an effective dementia plan, but it was later merged into a broader neurodegenerative strategy that did not work as well. Italy, despite having a good plan, did not allocate sufficient funding and is only now catching up. But it is particularly concerning to see large, developed countries like Spain without a national dementia strategy.

In South America, some nations have made significant strides by enacting laws that protect the rights of their citizens, and by addressing dementia from a human rights perspective. Although these advances create supportive communities for older citizens, they remain vulnerable to political instability and fluctuations in government support.

I have also observed innovative initiatives in countries like Switzerland and Japan. In Switzerland, there is a time bank system where younger individuals provide care for the elderly and earn credits that they can later use when they need care. Similarly, in Japan, a program called Fureai Kippu, known as the caring relationship ticket, was introduced in 1991. In this system, individuals earn time credits by assisting elderly or disabled persons with tasks such as shopping, cleaning, or providing companionship. These credits can then be redeemed to support their own family members in need when the time comes.

These examples demonstrate that while some countries are pioneering comprehensive, well-funded dementia strategies, others still have significant gaps to address. There are valuable lessons to be learned from these diverse approaches, and it is clear that consistent, well-supported initiatives are essential for making a lasting impact on dementia care.

PB: Beyond lack of access to diagnosis and medical treatment, what are the biggest challenges faced by people living with Alzheimer’s and their caregivers?

Barbarino: When someone receives a diagnosis of Alzheimer’s or another form of dementia, they need access to information and resources that can improve their quality of life, and that of their family. We are not just talking about the 55 million people currently living with dementia; we estimate that between 200 and 250 million people are affected when we include family members and caregivers. That impact comes with economic consequences—including loss of income and broader costs to society.

There are also generational challenges that are often overlooked. In some countries, working adults may leave the care of their parents or grandparents to children because they have to work to support the family. This puts a significant burden on younger generations, who may not be prepared or supported to take on this responsibility. The emotional, physical, and financial toll on families is immense.

One of the biggest challenges is the lack of support for caregivers. Many experience guilt, feeling they are not doing enough, but it is crucial for caregivers to take breaks and look after their own well-being. Respite care is essential. If caregivers are exhausted or unwell, they cannot properly care for their loved ones. Governments must step in to support this need.

We are also seeing new challenges, such as the growing vulnerability of older adults to fraud and financial abuse. This can come from external scams or even from within families. Stigma is another major issue. In our 2024 World Alzheimer’s Report on stigma, we found that more than 40% of people living with dementia and their caregivers reported withdrawing from social activities after receiving a diagnosis. This isolation is harmful and can accelerate the progression of the condition. It is vital that we help people remain socially engaged and included in their communities.

"One of the biggest challenges is the lack of support for caregivers. If caregivers are exhausted or unwell, they cannot properly care for their loved ones."

PB: What opportunities exist for cross-functional collaboration among the diverse stakeholder groups such as governments, HCPs, patients, industry, NGOs, etc. What partnerships or alliances is ADI fostering to drive systemic change in Alzheimer’s?

Barbarino: In theory, collaboration is essential and effective. But in practice, it can be challenging to identify who your real stakeholders are and who can be a genuine partner. It is easy to gravitate toward people who do exactly what ADI does—they understand our work, and it feels familiar. However, our role at ADI is to step outside of that comfort zone and engage with people and organizations who may not be directly involved in the Alzheimer’s space.

Over the past 5 years, we have made a concerted effort to do just that—to create more global conversations and reach new audiences. The ministries of health or social welfare already know what is needed, they are professionals. Sometimes, what we need to do is bring them together with caregivers, with people living with Alzheimer’s, and with other stakeholders, so they can hear directly how urgent the situation is. Too often, Alzheimer’s and dementia are things that governments feel they can “come back to later,” but it cannot be postponed. It is a public health emergency, and governments know that action is required.

The key to making a real impact in Alzheimer’s care is that everyone must feel they have a stake in the solution. Only then can we create the kind of systemic change that is truly needed.

PB: How must healthcare systems evolve to better accommodate the needs of Alzheimer’s patients?

Barbarino: In 2020, the number of people aged 60 and over surpassed the number of children under 5. That shift alone should tell us something about the urgency of preparing our healthcare systems for an aging population.

From a healthcare system perspective, government bodies are often underfunded and unprepared to support changes as new diagnostics and treatments for Alzheimer’s become available. This is what concerns me. We have these innovations coming into the space with new diagnostic tools and new treatments, but many governments are simply not preparing for them. Are there enough neurologists and psychiatrists? Are there enough diagnostic facilities, infusion centers, and MRI and PET scanners? Have countries considered colocating infusion services with cancer centers to optimize resources? Generally, I am not seeing that level of planning, although a few countries are making progress towards these benchmarks. But this is no longer just about preparing for the future. These treatments are already here, and if action is not taken, healthcare systems will fail the very people we are meant to support.

We must also talk about the pace of policy change. It is simply too slow. I want to stress this clearly: governments are moving far too slowly. One example is the approval timeline for a recent Alzheimer’s medication in Europe took 26 months. Moreover, this treatment is only effective within a specific window after diagnosis. During that approval delay, countless individuals likely passed that window and are now no longer eligible for treatment by the time it gained approval. This is not just a slow process, there are real, human consequences behind each moment that passes.

Healthcare systems and governments must move faster, plan better, and work more collaboratively with the other health stakeholders. Only by doing that will we be able to serve Alzheimer’s patients properly.

"Healthcare systems and governments must move faster, plan better, and work more collaboratively with the other health stakeholders. Only by doing that will we be able to serve Alzheimer’s patients properly."

PB: What gives you the greatest optimism, and where do you feel the greatest cause for concern with regard for the future of the Alzheimer’s field?

Barbarino: What gives me the greatest optimism is the progress we are seeing in research and development. Last year, we conducted a forecast and found that there are over 100 potential treatments currently in advanced stages of clinical trials. These are not just early stage assets, but potential therapies that are well into the later stages of clinical development. That gives me enormous hope.

Of course, there is still a lot to be done in other areas like awareness and care, but I believe that when people see there is real potential for treatment, they will be more likely to take an interest in this field. Often, people turn away from issues they feel powerless to change. But when there is something to be done, something that can make a true difference, I hope the public will begin to demand more action from their governments.

That said, I have not yet seen public demand emerge at the level that I believe we need. There is hope, but we still have a long way to go in raising awareness and pushing for change from a public perspective.