This year over 12 million people in the world are expected to have a stroke, for 6 million of them this will be the beginning of their ‘life after stroke’. Like a fire in the brain, if left unattended stroke can be devastating, burning out areas that not only control our daily functions, but that define our sense of who we are. From eating and sleeping, walking and talking to how we feel, find meaning and engage with the world, the long-term impact of stroke is arguably deeper and more complex than any other chronic medical condition. While fast access to quality stroke treatment can put out the fire, every stroke survivor will sustain some damage. Almost all of the 100 million people in the world who have experienced a stroke, will be faced with the work of restoring, reconfiguring, or rebuilding their lives. That effort can last a lifetime, 10 years after stroke up to two thirds of stroke survivors will experience a disability that impacts their daily life.
The stroke survivor community is huge and a recent WSO-Lancet Neurology Commission report suggests it set to grow significantly in the next two decades. The largest growth will be in low and middle-income countries, where people already experience the greatest barriers to quality stroke care access, across the care continuum. Poor access leads to poor outcomes. Combined with a lower average age for stroke, this translates into an urgent existing, and growing, need for long-term community-based care and support, that optimises individual recovery and improves long-term quality of life. While outcomes can be improved to some extent through formal stroke rehabilitation services, the depth, range and complexity of stroke on individuals require wider, more long-term provision and should demand higher priority as part of the healthcare system.
For understandable reasons, healthcare policy attention has focused attention on prevention and access to treatment, with a consequent gap in understanding and developing services to ensure the long-term needs of stroke survivors and caregivers are met. Survivors and caregivers often highlight chronic mental health problems, issues with concentration and fatigue as significant challenges in their daily life, and yet these areas remain poorly understood, under-researched and, as a result, are not being met by effective interventions.
Research into unmet needs of survivors and carers by the Stroke Association UK and and March of Dimes in Canada, has found similar issues and have highlighted the need for better information and support around, loss of independence, returning to work or meaningful occupation, addressing and managing financial impacts and maintaining social connections. Rebuilding a life after a stroke is often about adjusting to and accepting loss, finding ways to reintegrate into communities, family and social networks and ultimately finding meaning in a life that has been saved. This can be a long-term process, that needs to begin during discharge planning from medical care, and to continue on return home, or in new accommodation that can meet individual care and support needs.
A significant barrier to implementing services to address these needs is a lack of common understanding and evidence around what is required and what works. While stroke could be described as the ‘poor relation’ in global NCD investment and research, investment in life after stroke needs could be said to sit somewhere in the ashes. A recent literature review of unmet needs of stroke survivors in Europe, commissioned by the Stroke Alliance for Europe, highlighted the paucity of research into the long-term needs of stroke survivors and their carers. The needs of carers, many of whom have seen their relationships with the person that they love most in the world transformed, as they take on demanding caregiving responsibilities, have perhaps been most overlooked in both research and service development. Without a robust shared understanding of needs and measurable impact of interventions, it is hard to advance the case for investment and implementation in long-term support needs of survivors and caregivers.
This is why WSO has placed an emphasis on strengthening stroke support organizations (non-profit organizations that provide on-going support for stroke survivors, engage in advocacy and fund research). We know that these organizations are often a vital provider of care and support and even more importantly, by bringing patient experience to the table, they can be strong advocates for quality stroke care. By bringing the experiences of survivors and caregivers to the table we can build a more detailed picture of what works.
You can follow the WSO Life After Stroke campaign on our Facebook and Instagram and Twitter/X channels and share your experiences, perspectives and resources to improve #LifeAfterStroke.
Member login
