by Mihai Radu Ionescu, Vascular and Interventional Neurologist, Colentina Clinical Hospital, Bucharest, Romania
As physicians and neurologists dealing with stroke on a daily basis, we have become very adept at managing acute stroke, with remarkable improvements in clinical outcome. From increasingly sophisticated imaging and diagnostic techniques, to targeted reperfusion therapies and mobile stroke units, extended time-windows and indications for reperfusion, tailored blood pressure management and acute antithrombotic treatment, we have made considerable progress. We are also increasingly focused on targeted secondary prevention measures and perhaps even approaching a new dawn for neuroprotective agents in the age of reperfusion.
Yet, all of this remains largely within the confines of hospital-based care, where neurologists, neurointerventionists, radiologists, emergency medicine physicians, intensive care specialists and neurorehabilitation specialists work together to deliver these advances. In doing so, we may sometimes overlook what happens once patients are discharged and left to navigate the aftermath of stroke.
As encouraging as these advances may seem to us, patients experiencing stroke today may not yet share our sense of progress. They are often confronted with the deficits they must now live with, rather than the improvements in outcomes that we see from a clinical perspective. Meanwhile, families and caregivers face the burden and psychological pressure of supporting someone dear to them, in their time of need, often with limited information and guidance on how to manage best these new realities.
Recognising this aspect of stroke, which we physicians may not fully appreciate, we invited patient representatives from three member states of the Stroke Alliance for Europe (SAFE) to share their perspectives on the other side of stroke.
To mark this year’s World Stroke Day, we wanted to explore the unmet needs of patients, what they wish neurologists and stroke specialists better understood and how the EAN could contribute more effectively to improving the quality of life for stroke survivors across Europe.
I would therefore like to thank Dorina Dobreva, President of the Association for Stroke and Aphasia, Bulgaria; Christina Franzisket of the Die Stiftung Deutsche Schlaganfall-Hilfe (German Stroke Foundation), Germany; and Liliana Curea, President of Asociaţia pentru Lupta Împotriva Accidentului Vascular Cerebral (Association for the Fight Against Stroke), Romania, for kindly accepting this interview and helping us gain a fresh perspective on the priorities that should shape our efforts in stroke care, in the years ahead.
How large is the estimated impact of stroke in Europe in terms of patient numbers and socio-economic burden?
Dorina Dobreva, President of the Association for Stroke and Aphasia, Bulgaria:
The impact is enormous, and I believe we still underestimate it. Without stronger investment in prevention, treatment and rehabilitation, the total economic burden is projected to rise to around €86 billion by 2040.
But as both a caregiver and patient advocate, I have learned something very important:
Statistics can make human suffering invisible. Behind every number is a person. Behind every survivor is a family. And behind every family, someone is trying to keep hope alive every single day.
When my mother survived a stroke in 2016 and was left with aphasia, I did not remain simply her daughter. I became her caregiver, interpreter, advocate and the person searching for answers when there seemed to be none. And that experience is repeated in families across Europe.
So the true burden of stroke cannot be measured only in hospital costs or disability-adjusted life years. It must include the spouse who stops working, the daughter who becomes a caregiver, the person with aphasia who becomes socially isolated, and the family trying to rebuild a life that changed in seconds.
Stroke is not an event affecting one patient. It is a life-changing condition affecting families and communities.
Christina Franzisket, Die Stiftung Deutsche Schlaganfall-Hilfe (German Stroke Foundation), Germany:
Stroke affects around 1.5 million people a year across Europe, while roughly 9 million people are living with its effects. The latest Europe-wide service-tracker report recorded about 1.46 million stroke events in 2023. A separate, detailed economic study estimated €59.6 billion in annual costs across 32 European countries in 2017. Healthcare and social care together accounted for about €31.3 billion; unpaid care and lost productivity made up the rest1.
Liliana Curea, President of Asociaţia pentru Lupta Împotriva Accidentului Vascular Cerebral (Association for the Fight Against Stroke), Romania:
Stroke is one of Europe’s leading causes of death and long-term disability, with a substantial impact on patients, families, healthcare systems, and the wider economy. Its burden is measured not only by the number of people who experience a stroke each year, but also by survivors living with lasting disability and the costs of long-term care and lost productivity.
Approximately 460,000 deaths occur annually, making stroke a major cause of premature mortality as well as acquired long-term disability.
The economic burden extends well beyond acute hospital treatment. Hospitalisation, emergency treatment, medication, rehabilitation, nursing care, and residential care account for a major share of expenditure. Premature death, reduced ability to work, early retirement, and time away from work among family caregivers reduce economic output. Unpaid care by partners, relatives, and friends creates substantial costs that may not be fully reflected in healthcare budgets.
What is the greatest unmet need in stroke from the patients’ perspective?
Dorina Dobreva, Bulgaria:
For me, there is one overwhelming answer: life after stroke.
Modern medicine has made extraordinary progress in saving lives. But we must now ask an equally important question: what happens to the life we have saved?
Too many survivors reach the end of acute treatment or rehabilitation and suddenly discover that the organised pathway ends, while their stroke journey continues.
The Stroke Action Plan for Europe identifies important unmet needs in communication, relationships, loneliness, fatigue, mental health, finances and social participation and highlights the need for personalised care plans and coordinated long-term support. For people with aphasia this can be particularly devastating. When my mother lost her speech, our family discovered how easily the loss of communication can become the loss of autonomy, participation and even visibility.
But aphasia does not mean that the person has lost their intelligence, personality or right to be heard.
Through our work in Bulgaria, I have seen that progress after stroke is often not a dramatic miracle. It may be one survivor gaining access to rehabilitation, one family receiving the right information, one person protected from abandonment, one voice restored after years of silence. That has changed how I define successful stroke care.
Recovery is not only about survival or physical independence. It is about dignity, communication, participation and connection.
Our biggest success in 2026 was the launch of an innovative programme in alliance with the Sofia Municipality and the Sofia University, providing free speech therapy to people with aphasia and this gave us a real hope that building strong alliance with all stakeholders and knowing the real unmet needs of stoke survivors leads to positive results.
And this applies not only to stroke survivors, but also to their families and caregivers.
Christina Franzisket, Germany:
According to Franzisket et al. (2025)2, approximately 70% of the 979 stroke survivors surveyed in Germany reported at least one unmet need. The main areas identified were:
- Further rehabilitation: unmet needs for additional rehabilitation measures after stroke (33%).
- Support with memory and concentration: insufficient help with cognitive difficulties affecting remembering and concentrating (29%).
- Further therapeutic interventions: unmet needs for additional therapy to address the consequences of stroke (26%).
- Management of spasticity: insufficient support for stiffness in the arms, hands and/or legs (24%)
- Difficulties accessing and using digital information resources (21%)
These findings highlight the importance of identifying individual unmet needs in stroke aftercare to support personalised care and quality of life.
Liliana Curea, Romania:
From the patient’s perspective, one of the greatest unmet needs in stroke is access to effective, continuous rehabilitation and support that helps them regain independence and return to meaningful everyday life. Stroke care can be highly effective at saving lives and treating the acute event, but many survivors face months or years of physical, cognitive, emotional, and social challenges. Patients and families often experience a gap between surviving a stroke and rebuilding their lives afterward.
Importantly, there is no single unmet need shared by every stroke survivor. Priorities vary with stroke severity, the type of impairment, personal circumstances, and the stage of recovery.
The five most important unmet needs
1. Continued rehabilitation and functional recovery: patients want to improve walking, arm and hand function, speech, and self-care. Rehabilitation often becomes less accessible after discharge, even when patients still have significant potential needs.
2. Clear information and guidance: patients and families need to understand what to expect, what recovery is possible, how to manage symptoms, how to prevent another stroke, and where to obtain help. A systematic review found information support to be a leading unmet need.
3. Recognition and treatment of invisible symptoms: fatigue, memory and concentration problems, depression, anxiety, pain, and communication difficulties can severely limit daily life, even when physical recovery appears good. These problems may be under-recognised or inadequately treated.
4. Coordinated long-term care: patients need a clear care pathway after hospital discharge, with regular follow-up and coordination between neurologists, rehabilitation teams, primary care, mental health services, and community support. Many feel unprepared for life after discharge.
5. Return to normal life and independence: beyond clinical recovery, patients want to return to work, hobbies, relationships, driving, and social participation. Financial pressures, accessibility barriers, and caregiver burden can make this difficult.
What do you wish neurologists and other professionals working in the field of stroke would understand better?
Dorina Dobreva, Bulgaria:
I would like professionals to understand that the outcome that matters clinically is not always the outcome that matters most to the person living with stroke.
We understandably measure mortality, recurrence, mobility and functional independence, but the survivor may be asking very different questions:
Can I talk to my family?
Can I return to work?
Can I participate in society?
Can I make decisions about my own life?
Will people still see me as the person I was before my stroke?
Those are also stroke outcomes.
I particularly want professionals to understand that communication recovery deserves the same seriousness as physical recovery.
One of the changes I describe in my WSO story is convincing even one professional that communication recovery is just as important as physical rehabilitation. For someone with aphasia, being able to walk across a room but not tell their child what they are thinking or feeling can hardly represent complete recovery.
I would also ask healthcare professionals to recognise the caregiver as part of the pathway. When my mother had her stroke, I became a caregiver without preparation, training or a roadmap. I became an interpreter and advocate because somebody had to fill the gaps. Across Europe, millions of families are effectively asked to become part of the healthcare and social-care workforce overnight.
We should not build stroke systems that depend upon exhausted families filling the gaps between services.
Finally, I would ask professionals to listen differently. A person who cannot speak fluently may still understand you. They still have preferences, ambitions, fears and expertise in their own life.
Never confuse difficulty communicating with an absence of intelligence, identity or voice.
Christina Franzisket, Germany:
Neurologists and everyone working in stroke care should understand that surviving a stroke is the beginning of a different, often long and unpredictable journey. A person may be medically stable and appear to have recovered, while still struggling every day with fatigue, pain, memory or concentration problems, difficulty finding words, anxiety, depression, or changes in confidence and identity. These effects can be invisible to others, and people may feel they have to prove that they are real. Recovery is not only about independence in the narrowest sense. It is also about being able to return to work or education, maintain relationships, care for others, take part in the community, and do the things that make life meaningful. What matters most will differ from person to person, and may change over time.
People with stroke should be asked what they are finding difficult and what they want their life to look like—not only during rehabilitation, but months and years later. Important to recognise is also that families and carers need information and support too, while the person who had the stroke must remain at the center of decisions about their own life.
Liliana Curea, Romania:
A successful stroke treatment is not the end of the patient’s journey. It is the beginning of their recovery.
Patients do not experience stroke only as a neurological event. They experience it as a profound change in identity, independence, relationships, confidence, and their ability to participate in life.
I would emphasise five things:
A good clinical outcome does not always mean a good recovery. A patient may walk independently yet struggle with exhaustion, memory, communication, anxiety, or returning to work. Outcomes should reflect what matters to the individual, not just conventional disability scales.
Recovery does not stop at hospital discharge. Patients can feel that professional support disappears just when they must navigate the most difficult transition. Follow-up, rehabilitation, and access to specialist support should continue as needs evolve.
Listen to patients about their own goals. Regaining the ability to use a hand, hold a conversation, care for a child, return to work, or spend time with friends may matter more to a patient than a change in a clinical score. Care should be personalised around these goals.
Invisible symptoms deserve visible attention. Fatigue, cognitive difficulties, depression, sleep problems, and emotional changes are not secondary concerns. A 2026 meta-analysis found that 65% of stroke survivors reported at least one unmet need, with information needs, fatigue, and concentration difficulties among the most common.
Families and caregivers are part of the recovery journey. They need information, practical training, emotional support, and recognition of their own burden. They should not be expected to fill gaps in the healthcare system without support.
Instead of asking only, “How are you recovering from your stroke?”, consider asking:
“What is the hardest thing for you to do now that you could do before your stroke, and what would make the biggest difference to your life?”
That question can reveal needs that routine examinations and standard outcome measures may miss. Tools such as the World Stroke Organization’s Post-Stroke Checklist can help structure these conversations across physical, cognitive, emotional, and social domains.
How could you see the EAN contributing more effectively to improving the quality of life for stroke survivors across Europe?
Dorina Dobreva, Bulgaria:
The EAN has a unique opportunity because it connects science, clinical practice, education and neurological leadership across Europe. It already works to reduce the burden of neurological disease and its Scientific Panel on Stroke contributes to research, education and clinical guidelines. I would like the EAN to help Europe make the next major transition in stroke care: from saving lives to enabling lives worth living.
I see four priorities:
1. Make life after stroke a core neurological outcome. Stroke outcomes should extend beyond mortality and functional scores. We should systematically consider communication, cognition, fatigue, psychological wellbeing, social participation, return to work and quality of life, using patient-reported outcomes alongside traditional clinical measures. The Stroke Action Plan for Europe already highlights the urgent need for patient-reported outcome measures and structured follow-up after stroke.
2. Educate neurologists about what happens after discharge. Every neurologist should understand not only how to save the brain during the first hours, but also what may happen to that person’s life six months, two years or ten years later. The transition from hospital to home should not be the point where stroke care becomes invisible.
3. Put lived experience inside science, not beside it. Stroke survivors, people with aphasia and caregivers should participate meaningfully in developing research priorities, clinical guidelines, educational programmes and outcome measures. Not simply as people invited to tell an emotional story after decisions have already been made. Nothing about life after stroke should be designed without people who actually live it. The Stroke Action Plan for Europe similarly calls for formal involvement of survivors, caregivers and their organisations in identifying needs and developing solutions.
4. Use the EAN’s influence to reduce inequalities across Europe. My experience in Bulgaria has shown me what happens when families encounter fragmented services and have to search individually for rehabilitation, information and long-term support. My advocacy began not from inspiration, but from necessity. Geography should not determine recovery. Whether someone experiences stroke in Stockholm, Sofia or a small rural community, there should be a minimum European expectation for follow-up, rehabilitation, communication support and life-after-stroke care.
Medicine has become remarkably good at saving lives after stroke. Our next challenge is to make sure those lives can truly be lived. My own journey began when my mother survived a stroke and lost her speech. I became a caregiver because I was her daughter. I became an advocate because I discovered how many other families were facing the same uncertainty and loneliness.
Today, through the Association for Stroke and Aphasia in Bulgaria, I know that change rarely comes as one great victory. It comes in one family, one survivor, one professional and sometimes one restored voice at a time.
So, my message to Europe and EAN is simple: a life saved must also be a life supported. Survival is the beginning. Dignity, communication, participation and belonging must be our definition of success!
Christina Franzisket, Germany:
- Cooperation with the Stroke Alliance for Europe (SAFE)
- Promote structured follow-up and coordinated care, with regular assessments of unmet needs and clear pathways between hospitals, rehabilitation, primary care and community services.
- Advocate for equitable access to rehabilitation and therapy, including support for memory and concentration difficulties, spasticity, fatigue and psychological wellbeing.
- Strengthen the involvement of stroke survivors and caregivers in research, guideline development and service design, ensuring that their priorities shape decisions.
- Support healthcare professionals through practical training on long-term stroke consequences, secondary prevention and participation in everyday life.
- Improve access to understandable information, providing multilingual, accessible resources alongside non-digital alternatives for people who experience difficulties using digital information.
- Encourage research and evaluation focused on outcomes that matter to survivors, including quality of life, independence and social participation.
Liliana Curea, Romania:
I would see the EAN contributing most effectively by turning the patient-centred principles of stroke care into measurable improvements in everyday life for stroke survivors, regardless of where they live in Europe.
The EAN already has an important role in European neurological advocacy, professional education, and influencing health policy. It could build on these strengths while working closely with the European Stroke Organisation (ESO), Stroke Alliance for Europe (SAFE), national neurological and stroke societies, rehabilitation professionals, and people with lived experience. I believe the EAN could contribute more effectively by making the long-term quality of life of stroke survivors a more visible priority alongside acute treatment and prevention. This means listening systematically to patients and caregivers, equipping neurologists to recognise and manage the often-invisible consequences of stroke, and promoting equitable access to rehabilitation and long-term follow-up across Europe.
What can you do?
Involve people with lived experience in developing educational programmes, clinical recommendations, research priorities, and policy positions — not simply asking for feedback after decisions have been made. Expand training for neurologists and multidisciplinary teams on post-stroke fatigue, cognitive impairment, aphasia, mood disorders, sleep problems, sexual health, return to work, and caregiver needs. Include practical skills for shared decision-making and personalised recovery goals. Work with national societies and policymakers to identify gaps between countries and regions, particularly in post-discharge rehabilitation, specialist follow-up, psychological care, and community support. Promote minimum standards and help countries adapt evidence-based models to their local resources. Use EAN’s advocacy and convening role to bring together governments, healthcare systems, researchers, professional societies, and patient organisations. Advocate for adequately funded stroke pathways spanning prevention, acute treatment, rehabilitation, and long-term life after stroke.
Success should not be measured only by how many patients survive a stroke, but also by how many can regain independence, participate in society, and achieve the best possible quality of life.
For more information about World Stroke Day, visit World Stroke Day 2026 | World Stroke Organization
Sources:
- Hanne Christensen, Francesca Romana Pezzella, Melinda Berg Roaldsen, Ales Tomek, Christian Ovesen, Arlene Wilkie, Hrvoje Budincevic, Martin Dichgans, Urs Fischer, Josefine Grundtvig, Peter Kelly, Grethe Lunde, Chris Macey, Robert Mikulik, Amira Rosenørn, Gustavo Santo, Diana Aguiar de Sousa, Cristina Tiu, Simona Sacco, Aleksandras Vilionskis, Bo Norrving, SAP-E collaborators , Status on stroke and stroke care in Europe 2023: Stroke Service Tracker 2023 data based on 1,460,360 strokes in 47 European nations, European Stroke Journal, Volume 11, Issue 2, February 2026, https://www.elasf.org/wp-content/uploads/2023/08/03-at_what_cost_eios_full_report.pdf
- Franzisket C, Voigt C, Brinkmeier M, Wagner M, Pries R. Unerfüllte Bedürfnisse in der Schlaganfall-Nachsorge – Auswertung einer Befragung von Schlaganfall-Betroffenen in Deutschland. Gesundheitswesen. 2025;87(08/09):517–523. doi:10.1055/a-2525-2857.
