In her final interview as chief executive, Alzheimer’s Disease International’s Paola Barbarino argues that we need a total societal shift in how we value care.
For Paola Barbarino, the outgoing chief executive of Alzheimer’s Disease International (ADI), the worldwide federation of Alzheimer associations, the future of dementia care isn’t just a matter of clinical breakthroughs or technological gadgets. It is a matter of political courage. After years of leading the global federation across 103 countries, Barbarino is using her final interview to issue a stark warning: the world is facing a tsunami of dementia, and the current strategy of kicking the can down the road is a failure of both funding and imagination.
Here, she talks to Healthcare Today about the double whammy facing the sandwich generation, calls for a leapfrog in global health infrastructure, and argues that a medical diagnosis without a post-diagnostic care package is more than just a systemic failure – it is a moral one.
When you look at dementia care globally, what are the most credible innovations, which are likely to change practice in the next three to five years?
I see three distinct areas where innovation is fundamentally changing the experience for both the individual and their support network.
The first is a vital shift from reactive to preemptive monitoring. For decades, care has been triggered by a crisis – someone falls, and then we act. Today, we have the technology to monitor sleep patterns and daily movement within the home. This allows us to spot the odd deviations in routine and intervene before a fall happens or a negative outcome occurs.
The second area involves empowering the carer through data. We are seeing AI platforms that allow carers to log and monitor subtle changes in a person’s daily life. This is transformative because carers often lack the specific medical language to describe a slow decline to a doctor. By bringing a regular log of readings to a consultation, the conversation becomes far more meaningful.
Finally, there is the rise of empathetic technology. I am particularly inspired by tools that empower the individual to maintain their independence with dignity. Whether it is AR glasses that gently guide someone through the steps of making a cup of tea or virtual reality experiences like LifeLens, which allow a carer to step into the shoes of someone with dementia. When a carer can actually experience the spatial and cognitive challenges their loved one faces, it fosters a level of empathy and understanding that no textbook could ever provide.
“There is a fundamental dishonesty in how we discuss dementia today.”
Are governments and health systems prioritising tech-led diagnosis because it’s cheaper, more measurable and politically attractive than long-term care reform?
There is a fundamental dishonesty in how we discuss dementia today. Governments find it much cheaper to talk about the glamour of innovation and research than to actually address the gruelling, expensive reality of long-term care.
I have lost count of how many times I have sat in a room with a minister as they announce yet another review or another form of better-integrated care, only to realise it is nothing more than a dilatory tactic. They are avoiding the core issue. I believe it would be far better if governments simply had the courage to tell the truth: “There is no funding”.
Only by admitting this bankruptcy of resources can we open a meaningful dialogue on what else can be done.
The scale of this challenge is not an exaggeration. ADI recently published research forecasting that by 2040, dementia will be the third leading cause of death globally. In high-income countries like England, Australia, the Netherlands, and Finland – where recording practices are more diligent – it is already the number one killer. We forecast that this trend will soon sweep through middle-income countries as well. We are facing a tsunami, and the time for delay tactics has long since passed.
Are we talking about marginal gains like monitoring and alerts, or genuine changes in how care is delivered?
The impact of AI on diagnostics has been nothing short of revolutionary. We have reached a point where AI is often more accurate than the human eye at distinguishing the subtle, early markers of cognitive decline. From speech recognition platforms like Canary Speech – which is already penetrating low-income countries to provide affordable screening – to a wave of digital and blood-based biomarkers, the capacity to identify deterioration early is transforming our field.
However, we face a significant bottleneck. While AI can flag potential issues, the new generation of treatments still requires a confirmatory diagnosis of amyloid in the brain. Currently, that requires either an expensive PET scan or an invasive cerebrospinal fluid draw. The front end of AI diagnosis is moving at light speed, but the confirmatory infrastructure hasn’t quite caught up yet.
While these technical leaps are improving the monitoring of people, the one thing that technology does not automatically improve is compassion. This is why I am so passionate about tools that focus on the care journey itself.
Platforms that share collective knowledge are vital; they ensure that neither the person with dementia nor their family feels alone. We are even seeing apps that monitor the resilience of the carers themselves. In a world of intense carer guilt, we need AI that can act as a mirror, telling a compassionate family member when they are reaching the point of exhaustion and need to take a break.
If AI can help a carer understand their own limits, it becomes a success not just for the individual but for the safety of the patient as well.
“We must stop treating dementia as an isolated medical problem and recognise it for what it truly is: a societal disease.”
Dementia patients are particularly vulnerable. Do we need to think about consent and data use in AI tools? Are current regulatory frameworks fit for purpose?
The reality of our field is that we are never truly up to speed; the technology simply moves too quickly for traditional governance to keep pace. While the European Commission has been particularly alert to these shifts, there is a constant, urgent need to do more. This isn’t just a technical challenge; it is a legal and ethical one.
Interestingly, the geographical vanguard of this awareness isn’t always where people expect. Countries in Asia have been extremely proactive. Japan, for instance, has been light-years ahead of the rest of the world regarding dementia inclusivity and person-centred care, as has Taipei. As a global movement, we are collecting testimonies from these leaders to understand the hurdles they’ve already cleared.
However, we must be honest about the current state of the market: wide-scale deployment is still limited. We are currently in a transition period – waiting for the first wave of associations fully to adopt these tools so we can finally see what real-world problems emerge when lab-tested AI meets the complex, messy reality of daily care.
If you had to advise UK policymakers, what would you advise them to do?
We must stop treating dementia as an isolated medical problem and recognise it for what it truly is: a societal disease. The current political approach, particularly in the UK, suffers from a dangerous lack of honesty. We continue to promote early diagnosis, yet we ignore the elephant in the room: what do you tell a family once the diagnosis is made if there is no care package to follow? You cannot have diagnosis without post-diagnostic support. To identify a serious, life-altering condition and then offer no indication of what happens next is to leave families in a void.
This incoherence extends to the very structure of our government. We speak to ministers of health, like Wes Streeting, but the health silo often fails to communicate with the social welfare silo. While risk reduction is critical, that does not help the 600,000 people in the UK living with the condition right now.
Furthermore, we must look at the impact on productivity and labour. For years, ADI has engaged with the International Labour Organization because dementia is a double whammy for the workforce. We have made fantastic advancements in parental rights, yet we offer almost nothing to the sandwich generation, those caring for both children and elderly parents. These people are often forced to give up work and move onto benefits, creating a massive, unaddressed drain on national productivity.
Until the government stops kicking the can with endless reviews and starts to look at dementia coherently – across health, labour, and social welfare – we will continue to fail. This is a massive population issue that requires more than just a single minister’s attention; it requires a total societal shift in how we value care.
