Lived Experience of Stroke Chapter 3 Caring for a stroke survivor: what carers need Rebuilding lives after stroke 2 Contents 4 Foreword 6 In summary 8 Introduction 8 About the survey 10 Who is a carer? 14 Becoming a carer 18 Coping with being a long term carer 22 Getting enough support 26 Sources of support 28 What needs to change 30 How we are helping 3 Foreword Miriam Margolyes My mother had a major stroke in 1968. Back then, there was absolutely Over half a century has passed since my family’s life was transformed no support available to help either her or us. It was, without a doubt, so terribly by stroke. I am thankful that stroke care has improved in the worst time of my life. If you have not lived through it, you just that time. However, reading people’s stories in the Lived Experience cannot understand the devastation of stroke, how horrifying it can of Stroke report, my heart breaks to learn that carers are still all too be. My father and I became her instant carers and our family life often being overlooked and under supported. completely ended. Daddy would do all of the caring during the week and as I had left home by then, I would return at weekends to help out Most stroke survivors rely on a carer and while sometimes these and provide respite and support to both of them where I could. are paid roles, it frequently falls to a family member or loved one to provide the majority of the physical and emotional heavy lifting. I Mummy had been the absolute the rock in my life. She was the most know from experience that caring long term takes its toll. vivid person I have ever known. She was accomplished and brave and fearless. The stroke changed all of that instantly. From being Carers say they experience negative emotions such as stress or this vibrant, alert, shrewd, funny lady she turned into someone who exhaustion and they don’t get the support or information they need could barely talk and was unable to move - it was the most terrible, to help them fulfil their caring role. On top of this, carers often have shocking transformation you could imagine. We had to do absolutely many other responsibilities in their lives which can be adversely everything for her. affected. They may find that their careers suffer because of the stress they face at home or relationships with other family members and friends can become side-lined. The situation just isn’t good enough. Things can and must change. 4 Return to Contents The Stroke Association is working to change the picture for carers. The charity supports carers through their helpline, website and face to face, as well as providing information booklets full of practical tips and advice. They also fund stroke groups, which can give carers a couple of valuable hours off. I support the Stroke Association in their belief that more needs to be done to support people caring for stroke survivors. All carers should be offered a carer’s assessment by their local authority and there should be enough services so that all carers can get the help they need. This help is vital to improve people’s knowledge of stroke, confidence in caring, awareness of support they are entitled to and connection to others who understand their situation. But most of all, it’s needed to make sure that the health and wellbeing of the carers themselves isn’t forgotten. With the right support and a tonne of courage and determination, both stroke survivors and carers can rebuild their lives after stroke. Miriam Margolyes Actress Return to Contents 5 In summary The Stroke Association is here to support people to rebuild their lives after stroke. More than 6 in 10 stroke survivors rely on the help and support of We found that: a carer to help them with day-to-day living – activities like getting dressed, making meals or going out to the shops. • 85% of carers don’t get the support and information they need to help them in their caring role. Sometimes people are paid to carry out these tasks. But often it falls to family members or friends, who become unpaid carers. • 87% of carers feel at least one negative emotion, such as stress or exhaustion, when their loved one has a stroke. To better understand the challenges facing stroke survivors and the help they need, we ran a representative survey of stroke survivors and • Whilst the emotional health and wellbeing of stroke survivors often unpaid carers. improves over time, sadly, the same cannot be said for carers. Their health and wellbeing does not improve with time. 85% of carers don’t get the • Caring long-term can take its toll. People who have been caring for stroke survivors for over three years are more likely to feel stressed support and information they or anxious than people who have not been caring for as long. need to help them in their It’s clear that people who take on a caring role are absolutely vital to caring role. stroke survivors rebuilding their lives after stroke. But caring can be incredibly demanding. Together we can do much more to support carers in all they do for On average, carers have stroke survivors. been caring for over five and a half years. 6 Return to Contents Return to Contents 7 Introduction Stroke strikes every five minutes in the UK. About the survey It can happen to anyone - young, old and In this report, we look at how carers feel their lives are affected everyone in between. There are over 1.2 by looking after their loved one, based on their responses to our million stroke survivors living in the UK.1 survey. Throughout the summer of 2018, 1,880 stroke survivors and carers Stroke isn’t like any other condition – it changes lives in an instant. from across the UK told us about their experience of stroke by And it’s not just the stroke survivor who is impacted but family and completing an online or telephone survey. Most of these people close friends too. You could be a husband or wife one day and need hadn’t been in contact with us before. We made sure that this to take on a caring role the next. sample was representative of the UK population. It doesn’t come with a warning or a training manual or guidance We ran the survey so that stroke survivors and carers could tell us notes but you’re in it because of the person you love. Many people in more detail about how their lives are most affected and where might not think of themselves as carers, but simply as family they need more support. members or friends doing the right thing for their loved one. They may only realise that they have been in a caring role many years later. This report focuses on what the 681 carers who responded to our survey told us about their caring role – how it affects them emotionally and about the kind of support they need. About the Stroke Association In previous reports we have shared more about the hidden effects Everyone deserves to live the best life they can after stroke. We of stroke and the practical and financial impacts of stroke. Later provide specialist support, fund critical research and campaign in the year we will publish a final report about the support stroke to make sure people affected by stroke get the very best care survivors receive, and bring all four reports together. and support to rebuild their lives. We support carers by providing information, advice and services. 1 Stroke Association, State of the Nation: Stroke statistics, 2018, https://www.stroke.org.uk/system/files/sotn_2018.pdf 8 Return to Contents Carer Age Carer Region 0% Under 16 0% 16-24 7% Scotland 1% 25-34 12% 35-44 22% 45-54 24% England - North 37% 55-64 Northern 5% Ireland 18% 65-74 3% 75-84 Average age Wales 5% 22% England - 0% 85+ Midlands 7% Prefer not to say 56.6 37% England - South Carer Gender 31% Male Charts on this page show the demographics of cares who answered our survey. 69% Female Return to Contents 9 Who is a carer Many stroke survivors rely on the help and support of a family member or friend to help them with day-to-day living – activities like getting dressed, making meals or going out to the shops. Who has a carer? Our survey found that, carers: • 62% of stroke survivors said they had an unpaid carer at some point since their stroke.2 • This could equate to several hundred thousand people caring for Are more likely to be female (69%). stroke survivors at any one time. • People whose stroke had had a more severe impact on their life were more likely to have a carer. Are of working age (60%). Often people become carers because of their relationship with the stroke survivor. Sometimes people don’t see themselves as The average age of a carer was 57. carers but as family members or friends simply looking after their loved one. Are looking after their partners (32%) or their parents (30%). Have been caring for an average of five and a half years. 2 Base: Nationally representative sample of 1880 stroke survivors and carers. 10 Return to Contents Chart showing carer’s relationship to stroke survivors: of carers are caring for a 32% partner, husband or wife 30% of carers are caring for a parent of carers are caring for their family members 15% (eg uncle, aunt, cousin) 12% of carers are caring for a child 8% of carers are caring for a friend Stroke survivors highly value the support provided by carers.