Research to rebuild lives after stroke

Today, Occupational therapists (OTs) are recognised as a core part of the treatment team for stroke patients. However, this wasn't always the case. We spotted the need for research to demonstrate the value of the expertise that allied health professionals, like occupational, physical, and speech and language therapists, bring to treatment and care for those affected by stroke.

Allied Health Professionals (AHPs), like occupational, physical and speech and language therapists, bring a wealth of expertise to the treatment and care of stroke survivors. We spotted the need for research that demonstrates the value of AHP expertise many years ago.

We funded Professor Marion Walker, an OT, early in her research career. Her work demonstrated the challenges faced by stroke survivors living at home, and crucially showed that they benefit from home-based occupational therapy.

This evidence was essential for the development of occupational therapy services being provided in the places where people live, not just in hospitals, in the UK. Her research has influenced guidelines on the support stroke survivors should be offered to adapt to their lives after stroke, such as relearning how to get dressed and move around outdoors.

She led a team of over 25 researchers at the University of Nottingham and has published over 100 research papers, contributing a huge amount to what we know about life after stroke.

Marion told us: 'Rehabilitation is absolutely crucial because it promotes brain plasticity. This is when your brain makes new pathways around damaged areas to regain function.

I'm an occupational therapist by background so I've always been interested in helping people live life fully and have the best quality of life. Funding from the Stroke Association was a lifeline for me, because at the time, there wasn't a career pathway that allowed me to work as an occupational therapist and do research.

Now, I'm most proud of flying the flag for the importance of rehabilitation research, showing other therapists that a career in stroke is worthwhile and you can achieve life-changing things for stroke survivors.'

Around a third of stroke survivors have problems with communication after their stroke. There are different causes: they may not be able to control the muscles around the throat and mouth that produce clear sounds, they may not be able to find the right words or understand what they're reading or hearing in order to respond.

Speech and language therapists (SLTs) are experts at finding out what's wrong and what could help. Our support for research in this area has:

• Influenced guidelines that recommend stroke survivors are seen by SLTs.
• Improved what we know about how SLTs can best work with stroke survivors in recovery.
• Informed a range of therapies that can be offered, including drawing, conversation and computer technologies.

We've supported Professor Jane Marshall, an SLT based at City University of London, from the early stages of her career to become the world-leading researcher she is today. Jane and her team's work has changed our understanding of computer-based therapies for stroke survivors.

Together with people affected by stroke, they have made a new virtual world called Eva Park, a place for stroke survivors with a communication problem called aphasia to practise their speech with SLTs or friends. The team hope that this will increase their confidence and help to recover their ability to communicate in the real world. Not only has our funding supported the creation of the new technology, but also it has attracted further funding for stroke research.

Jane, said, 'The Stroke Association should be congratulated for their fantastic contribution to research into therapy for communication difficulties after a stroke. In our department, they have funded projects investigating the use of drawing, writing, gesture and virtual reality technology in speech and language therapy. Most recently we have been able to explore the impact of peer befriending and the development of a novel therapy for discourse, or storytelling. They have supported the career development of many researchers, including myself, and enabled us to make a difference to the lives of people recovering from and adapting to communication problems.'

However, communication means more than being able to speak. It plays a key role in our ability to connect to people and the world around us. Our support for research into group therapies for stroke survivors with communication difficulties, such as singing groups, shows they could help stroke survivors to establish meaningful connections with others that can improve their quality of life.

If you're looking for support in your life after stroke, you can find more information here and on My Stroke Guide.

Through our research and contact every day with those affected by stroke, we know that many feel that they haven't had enough support to help them to cope with changes in how they think and feel. Between 2015-2019, we dedicated over £3.5million to highlight the need for and establish research in this neglected area.

Identifying a problem is the first step to get people the help they need. Previously, tests used to identify thinking problems in stroke survivors were not specific to stroke. They were borrowed from other health conditions such as dementia and were difficult to use with stroke patients, particularly those with communication difficulties. Our research helped develop new tests that improved how healthcare professionals spot thinking problems in stroke patients in the first days and weeks after stroke.

In 2014, we funded Dr Terry Quinn, a doctor and researcher at the University of Glasgow, through a new funding scheme for more experienced researchers to establish themselves as leaders. He now leads a team of researchers with an interest in emotional and thinking problems after stroke and has been hugely successful in improving our knowledge in this area. He's also attracted over £6million of additional funding for research into this under-represented area of great importance to stroke survivors.

Terry said, 'The Stroke Association made this research a priority by supporting me and others working in this area. We now have more evidence that can be used to understand what might work to spot problems and support more people experiencing problems with how they think and feel after stroke.'

We're still not sure about how we can best support stroke survivors to recover and adapt to changes in how they think and feel after stroke. However, one thing is certain - that stroke survivors should direct what their life after stroke looks like.

In 2010 we funded psychologist and researcher Dr Emma Patchwood, whose work found a way to measure the effect of thinking problems on daily life, recovery and mood from the stroke survivor's perspective. This can uncover which treatments might work best for individual stroke survivors and show if treatments are making a difference. This new tool is available for researchers looking for new treatments for thinking problems after stroke to use in their work.

Karen had a thrombectomy and had little physical disability after her stroke, but she told us how her stroke affected her mental health saying:

'The first time I was alone in the house it hit me like a truck; the shock.

I experienced extreme anxiety. Inside my head, I had a ping-pong ball ricocheting around. I couldn't stop the irrational, negative thoughts. I was fearful of going to sleep for thinking I wouldn't wake up.

I received support from the Stroke Association and NHS, and I researched online how to help myself combat anxiety and depression and very, very gradually my anxiety calmed. Although I still struggle with my thoughts, and often a lack of confidence, ‘onwards and upwards' is the phrase each morning that gets me out of bed. I try to accept the days and times when I don't feel so good; it's OK not to be OK, the best is yet to come.'

If you're looking for support in your life after stroke, you can find more information here and on My Stroke Guide.

How can you unlock emotions when you find it hard to speak?

Sometimes, it is possible to see someone's emotions. They may be laughing, crying or blushing. But often it's only by talking to someone that you can really understand what is going on in their mind.

A third of stroke survivors have aphasia, a type of communication difficulty, after their stroke. People with aphasia might have trouble speaking, reading, writing or understanding. This means they might not be able to express how they feel. Alisha had a stroke when she was just 26 years old. She told us: 'Having aphasia is like being in a bubble. You feel trapped in yourself.'

Many of the treatments we have for emotional problems after stroke rely on talking, reading or understanding language. This means they're not suitable for stroke survivors with aphasia, leaving fewer treatment options available to them.

We funded research that showed behaviour therapy specifically for people with aphasia could help improve emotional problems after stroke. Now, treatment guidelines recommend that individual behaviour therapy is available to those with aphasia.

We also supported Dr Sarah Northcott, a speech and language therapist and researcher, in their early research career. Sarah's research hoped to understand how stroke survivors with communication difficulties can be better supported to cope with emotional problems, such as depression, after stroke. She's now leading research in this area as a lecturer at the University of East Anglia.

Sarah said: 'Too often, people with aphasia are not able to access high-quality psychological support due to their language difficulties. This is particularly concerning as we know that people with aphasia are most at risk of feeling depressed and isolated after stroke.'

Vision problems are common after stroke. Around 20% of stroke survivors experience full or partial blindness in one eye. This makes reading difficult, as they can no longer scan the page in the same way they did before the stroke. This can really affect quality of life and independence, as it can affect whether someone is able to return to work or enjoy reading a book.

We funded Professor Alex Leff, a neurologist (a doctor who specialises in treating conditions linked to the brain and spinal cord) and researcher, to find out how stroke survivors could retrain their eyes to scan the page. His team developed a website that stroke survivors and those supporting them can use for free to identify and treat reading difficulties. It went live in 2011 and received 10,000 visitors that year alone.

You can visit the Read-Right website here and have a go yourself.

Specialist professionals called ‘optometrists' can help people recover and adapt to vision problems. Our funding supported Dr Christine Hazelton to develop new training resources for these professionals to better prepare them to help stroke patients.

However, researchers are still investigating the best treatment for vision loss. That's why we continue to fund Christine to improve treatments and training for healthcare professionals to improve life for stroke survivors with vision loss.

If you're looking for support in your life after stroke, you can find more information here and on My Stroke Guide.

A partnership to understand post-stroke vision loss

Vision loss is a common problem after stroke, but it can be caused by other conditions too. That's why we partnered with Fight for Sight, another research funding charity who support research into sight loss. By working together to fund research into stroke-related sight loss, we can bring more money into, and raise the profile stroke research to improve life for people affected by stroke. Find out more in our plans for research. ​

A stroke happens in the brain, the control centre for who we are and what we can do. The brain uses electrical signals to direct when and how your body moves. Many stroke survivors find they can't move in the same way as they did before their stroke. This can cause huge challenges in everyday life, as it can affect whether they're able to prepare and eat food, get dressed and leave the house. However, our funding has established a talented community of stroke researchers in the UK whose work has furthered our understanding of the relationship between the brain and body movement.

For example, stroke survivors experiencing muscle weakness can now be offered training to improve muscle strength. However, this wasn't always the case. At a time when there was uncertainty over if this treatment could help, our research established the need for and effectiveness of this treatment.

Whether a person can get back to moving as freely as they want to can depend on both physical factors, like their strength and flexibility, and mental factors, like confidence and fear. Our research showed that stroke survivors who received support from an occupational therapist - like discussing personal challenges and setting goals - were more likely to get out of the house as often as they wanted to, even up to 10 months after the treatment.

For researchers to continue to explore how we can address the less visible, mental factors, we need ways to measure them. Our funding supported the development of the first-ever ‘Confidence after Stroke Measure' that could be used by future researchers and healthcare professionals.

Questions remain over what the best treatment looks like to support stroke survivors to reclaim movement and minimise the distress they experience related to physical changes after stroke. We have been instrumental in funding research to help answer questions, such as how much therapy time is beneficial? And when should therapy start? And national clinical guidelines suggest research continues in this area.

Sheena had a stroke that left her unable to walk, speak or carry out daily tasks. She told us about the many ingredients that helped her movement: 'Physio worked tremendously well for me. They [the physiotherapists] were very motivating and I had good doctors, nurses and friends around me. I think my determination and faith really helped too'

Our research helped to establish the evidence that stroke survivors can regain movement and adapt to do the things they want to by practising the task many times, for a long time. However, this isn't always easy.

New technologies hold promise in stroke rehabilitation by adding to treatment time with healthcare professionals, and empowering and motivating stroke survivors to practice treatments on their own. This technology could help to make the most of valuable time and limited resources, while increasing the amount and quality of rehabilitation that stroke survivors receive.

We've invested in early research to find out which technologies could be a breakthrough, and which ones may distract from existing treatments that really work.

Our search for new treatment technologies

Our support for early, innovative research has transformed bold ideas into real-world solutions that continue to be tested, ensuring they will make the greatest difference to the lives of those affected by stroke.

The buzz around electrical stimulation

Stroke causes damage to the brain, your body's control centre. It can disrupt the electrical signals that tell your body how to move. Treatment devices that send electrical signals to muscles could help rebuild movement for stroke survivors who experience muscle weakness.

We still need more research in this area to find out which stroke survivors will benefit from the treatment and how, but our research catalysed further investigation into a treatment that can now be recommended for stroke survivors experiencing certain problems moving their arms and legs.

Electrical stimulation is one-way physical treatments could be improved. However, our research has uncovered more. For example, there was concern that moving quickly might trigger muscle spasticity (stiffness) in stroke survivors. But e funded a research project that provided evidence to counter these concerns, and show that stroke survivors could be encouraged to move at lots of different speeds when practising movements.

Virtual worlds to recovery in reality

Practising a task many times, for a long time seems to be what is most important for stroke survivors to regain movement. However, this can be a challenge and takes lots of energy, memory and motivation. Virtual reality shows promise in helping with physical rehabilitation, and we funded research that contributed to this rapidly moving area of research. For example, we funded a project that developed a virtual world where stroke survivors could practice making a hot drink.

The question of how stroke survivors can face the challenges of rehabilitation is not a new one.. ‘Supported self-management' describes the type of help and support offered to stroke survivors and their families after they have been discharged from hospital. Our funding has supported researchers to better understand what both stroke survivors, and healthcare professionals, think this should involve and what they're looking for in high-quality support that will encourage stroke survivors to self-manage.

Robotic assistants to meet the needs of stroke survivors

Research is yet to find how robotic assistance could really help stroke survivors to move on their own. However, our research provided the first steps for these studies by showing that stroke patients would be willing to receive this type of therapy, and investigating how we could test different types of robotic technologies for their effectiveness.

A wearable activity-tracker to get stroke survivors moving

Remembering to practice movements throughout the day can be a challenge for stroke survivors. Our research showed that wearing a movement-sensing device, like a watch, that reminded the wearer to move could be a simple but powerful way to help stroke survivors take control of their rehabilitation. This research paves the way for a larger trial that can find out how much of a difference the watch could make, and whether it's a cost-effective treatment option.

If you're looking for support in your life after stroke, you can find more information here and on My Stroke Guide.

Many stroke survivors struggle with fatigue, and it can affect their lives for many years after their stroke. We don't yet know enough about what causes fatigue or how to support people to overcome it. People affected by stroke have said that more research in this area can make a big difference in their lives.

Our funding for Dr Anna Kuppuswany's research found that lower levels of activity in certain areas of the brain could cause fatigue after stroke. This new knowledge can help guide researchers as they design and test new ways to manage and treat fatigue. Our support for her research has also attracted more funding in this area of unmet need as researchers continue to investigate the cause of this devastating effect of a stroke.

Right now, we are funding researchers at the University of Nottingham to develop a new programme that can support stroke survivors living at home to manage fatigue. It is hoped that this new programme will change stroke survivors' lives as they can better overcome and cope with fatigue. It could also save the NHS money by reducing the negative effects of fatigue, like difficulty engaging with rehabilitation and physical and mental health problems. You can find out more about this project here.

If you're looking for support in your life after stroke, you can find more information here and on My Stroke Guide.

Stroke turns lives upside down. We know that life for close family and friends also changes dramatically. They may need to take on new or different roles in supporting their loved one that has had a stroke to recover and adapt to life after stroke. People who take on these roles are often called ‘informal carers'.

However, it can be very challenging and our research has helped to understand what can support people in their caring role. Since the late 1990s, our research has uncovered the importance of support for the whole family in life after stroke. In 2002, we funded early research to develop a new programme aiming to harness carers' coping skills to improve their well-being. The research showed informal carers were willing to take part and it could help them adjust to the new role, paving the way for trials in more people.

A first step in deciding on appropriate support is assessing what that person needs. In 2006, we supported one of the largest research projects ever conducted in this area. This led to the development of a new questionnaire, called the Longer-term Unmet Needs after Stroke Questionnaire (LUNS). Today, this questionnaire is used to assess the long-term needs of stroke survivors and carers in the UK and internationally.

However, in 2019, we carried out a survey of over 10,000 people affected by stroke - the largest survey of its kind in the UK. In that survey, 85% of carers told us they did not feel that they get the support and information they need in their caring role. The results of our survey were further evidence that we need more research to find out what can work, and for whom, to support carers in life after stroke.

If you're looking for support in your life after stroke, you can find more information here and on My Stroke Guide(link is external).