Life after stroke in Germany – Best practice

15th January 2025

 

 

SAFE, the organiser of the European Life After Stroke Forum, is a non-profit-making organisation that represents stroke support organisations (SSOs) across Europe. Established in Brussels in 2004 to bring together the collective voices of stroke, we have grown to 36 members from 30 countries.

We asked our member organisations about the unmet needs of stroke survivors in their countries. Here is an outline of unmet needs and best practice examples from the German Stroke Foundation.

In Germany, there is currently no structured, standardised care management system in place to support stroke survivors once they return home. While acute stroke care has advanced significantly, with over 340 stroke units providing immediate treatment, many survivors and their families face considerable challenges in navigating life after stroke.

Dr. Michael Brinkmeier, CEO of the German Stroke Foundation (Stiftung Deutsche Schlaganfall-Hilfe), highlights a major gap in post-stroke care: “Over the past 30 years, more and more patients have survived their stroke due to excellent acute care. However, once they return home, many stroke survivors and their families feel overwhelmed by the challenges of life after stroke.”

A recent survey conducted by the Foundation revealed common concerns among stroke survivors, including:

  • Access to necessary therapies and rehabilitation services
  • Availability of relevant and reliable information
  • Adjusting to life with new disabilities
  • Identifying community support services and social participation opportunities
  • Securing financial assistance for home modifications
  • Returning to work or coping with the inability to do so
  • Regaining independence, such as driving a car again

Dr. Brinkmeier notes, “There is no structured, standardised case and care management system in Germany to guide stroke survivors through this difficult journey. This often leads to a decline in quality of life, not only for patients but also for their families.”

Maintaining a healthy lifestyle post-stroke can be difficult. Some survivors struggle to follow medical recommendations or stop treatment without consulting a doctor. Social reintegration is another hurdle, particularly for those experiencing hidden effects such as cognitive impairments, memory issues or emotional difficulties.

“Employers need to be aware that stroke survivors may face concentration issues or struggle to process new information,” explains Dr. Brinkmeier. “Similarly, friends and family members sometimes misunderstand post-stroke fatigue or changes in behaviour. There is still a lot of work to do to support stroke survivors in the months and years after their stroke.”

How the German Stroke Foundation offers support

The German Stroke Foundation is committed to establishing a structured, standardised stroke aftercare system. One of its key initiatives is the implementation of case and care management, with stroke navigators acting as patient’s coordinator of care. These stroke navigators help stroke survivors and their families access essential information, organise treatments and therapies, support secondary prevention measures, and assist with administrative tasks such as applications for financial aid.

“A key focus for us is ensuring every stroke survivor has access to the right aftercare,” says Dr. Brinkmeier. “We are working towards a system where stroke navigators help guide patients through the health and social care system, providing much-needed guidance and support.”

A major milestone in this effort was a case management study involving more than 1,600 stroke patients, completed in September 2021. Building on its success, a new trial started in 2024 in the East Westphalia-Lippe (OWL) region. This initiative will include 1,250 stroke patients and 600 cardiology patients, aiming to improve coordination between healthcare providers and enhance the overall quality of life for stroke survivors. It will be evaluated by the Institute for Applied Health Services Research in Berlin, with involvement from key health insurance companies and local authorities.

Beyond professional case management, the German Stroke Foundation has also developed a volunteer-based initiative to support stroke survivors in their daily lives. The Stroke Helpers programme provides training to volunteers who assist survivors with everyday tasks such as grocery shopping, leisure activities, and social engagement. To date, over 600 Stroke Helpers have been trained across Germany.

“We see the Stroke Helpers as a valuable addition to our efforts,” says Dr. Brinkmeier. “These trained volunteers help stroke survivors with simple but essential daily activities, enabling them to maintain a higher quality of life and social connection.”

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ELASF 2025 is an unmissable event for anyone with an interest in life after stroke. With lived experience at its core, the Forum offers a unique opportunity to share best practice, gain fresh insights, expand your professional network and contribute to the collective effort to enhance life after stroke across Europe.

 

 

About the German Stroke Foundation

The German Stroke Foundation celebrated its 30th anniversary in 2023. Founded by Liz Mohn in 1993, the organisation played a crucial role in improving stroke care in Germany. At the time, there was limited specialised stroke treatment, and public awareness of stroke symptoms and risk factors was low. Many patients did not receive timely medical attention, leading to preventable long-term disabilities.

Thanks to decades of advocacy and collaboration with leading stroke experts, Germany now has more than 340 certified stroke units, alongside a vast support network of over 300 self-help groups and 200 volunteer doctors, mainly neurologists. The Foundation also coordinates with more than 30 stroke offices across the country, providing essential information and support for survivors and their families.