Understanding Dementia Q3 2019 by Mediaplanet UK&IE

Q3 / 2019 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET WHO TAKE SOLE RESPONSIBILITY FOR ITS CONTENTS

Understanding Dementia

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I’ve been surrounded by Alzheimer’s most of my life. It is so cruel having someone who has nurtured you and taken care of you reach a point where they can’t even recall your name. Where there is research, there is hope. By sharing the knowledge that diseases like Alzheimer’s are not simply part and parcel of old age, we have the power to push research forward and put an end to this devastation. We must act now to speed up research towards breakthroughs.” - Samuel L. Jackson

It’s time to change the conversation Dementia is not a natural part of ageing. It’s caused by physical diseases, and through research, diseases can be slowed. They can be stopped. To help change the conversation, all you need to do is #ShareTheOrange.

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Now is the time to change the conversation about dementia AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

This World Alzheimer’s Day, there are fifty million people around the world living with dementia. This number is set to triple by 2050.

t A lzheimer’s Research U K, we believe research can change the future, but to have the best shot of succeeding, we must also change the conversation about dementia. Last year, our Dementia Attitudes Monitor asked thousands of people across the UK about their understanding of, and perceptions towards, dementia. We found that, although more than half of us know someone who has been diagnosed with the condition, understanding of the diseases that cause dementia remains low. More than one in five UK adults still thinksdementia is an inevitable part of getting older - that it’s just a normal part of later life. To make breakthroughs possible, we need this to change. Dementia is caused by physical diseases, most commonly Alzheimer’s disease. We need to move on from this fatalism around dementia and embrace t he hope t hat resea rch br i ngs. That ’s where #ShareTheOrange comes in. The third instalment of our award-winning campaign, launched this week, encourages people to think differently about dementia. Like the preceding

Dementia is not an inevitability. It can be overcome through research.” fi lms, it highlights the fact that a brain damaged by Alzheimer’s disease can weigh 140g less than a healthy one. That’s about the weight of an orange. It stresses that dementia is caused by physical diseases and these diseases can be slowed. They can even be stopped. Samuel L. Jackson supports film to challenge misconceptions around dementia The film is fronted by Hollywood star Samuel L. Jackson. We’re grateful to him for speaking candidly about the impact dementia has had on his family and for lending his support to this important issue. Previous #ShareTheOrange films, featuring Bryan Cranston and Christopher Eccleston, have enabled us to reach more than 20 million people, helping to bring global attention to the important truth that dementia is

HILARY EVANS CEO, Alzheimer’s Research UK

not an inevitability. It can be overcome through research. And global attention and action is what we need. Working to find treatments for dementia by 2025 Now is a critical time for dementia research as we work alongside other funders and the World Dementia Council to find the first life-changing treatment by 2025. Progress is being made in laboratories and clinics across the world. Scientists are discovering more about how our lifestyle can contribute towards our risk. There’s been a 50% increase in scientific publications on dementia in the last five years and the number of clinical trials to find new Alzheimer’s treatments has more than doubled since 2013. We must keep this momentum up. But you don’t have to be a scientist to play a role in tackling dementia. #ShareTheOrange empowers everyone to confront misconceptions and change the conversation. Read more at healthawareness.co.uk

What do we know about dementia prevention? Every three minutes someone in the UK is diagnosed with dementia. With an ageing population, no effective treatments to slow dementia and an overstretched care system, we need to focus more than ever on finding ways to prevent it.

istorically, research into dementia has been largely neglected, with the amount spent on dementia research dwarfed by spending on research into other conditions like cancer and heart disease. As a result, there are big gaps in our knowledge about what causes dementia and how to prevent it.

There is a genetic risk associated with Alzheimer’s We do know that there is a genetic component to Alzheimer’s disease which may increase your risk of developing it. Researchers have identified over 25 variants in our genes that influence our risk of developing Alzheimer’s disease. But they do not directly cause Alzheimer’s disease - it is extremely rare for dementia to be directly inherited from your parents. Reduce your risk of dementia through your lifestyle choices Encouragingly, there are things that everyone can do to reduce their risk of dementia. Recent research

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from the University of Exeter has begun to unpick the complex relationship between genetics and lifestyle factors. They have demonstrated that healthy lifestyle choices may be enough to offset higher genetic risk. Research, supported by Alzheimer’s Society, has shown a third of dementia cases could be prevented through lifestyle changes alone. New research has emerged indicating that controlling blood pressure may be significant in reducing dementia risk also. What’s good for the heart is good for the head. Eating well, not smoking, drinking less alcohol and keeping active can significantly reduce your risk of developing dementia. Who is at risk? To get a better understanding of how we can tell who is at risk of developing dementia, Alzheimer’s Society is supporting an in-depth study called PREVENT led by Professor Craig Ritchie at Imperial College London. The study follows over 700 people at risk of developing dementia to spot alarm bells in mid-life that could be the very earliest signs of the condition.

DR JAMES PICKETT Head of Research, Alzheimer’s Society

As part of the study, people wear virtual reality headsets and navigate their way through a virtual environment to assess the memory and navigation skills. Issues with these skills are thought to be some of the earliest signs someone could be developing dementia. Aiming to spot warning signs of dementia in the future Ultimately, research will then be able to test new treatments on people in the earliest stages of dementia and intervene before the condition has progressed too far. Alzheimer’s Society is committed to spending at least £150 million in the next decade to make this a reality. Research will beat dementia, but we need more funding to make the progress people with dementia so desperately need. Read more at healthawareness.co.uk MEDIAPLANET

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A global effort against dementia is needed Science, by its very nature, is a collaborative effort. Sharing results and experimental methods is at the core of the scientific approach. This exchange of information underpins the incredible progress science has made.

ut scientific collaboration goes far beyond this. When dementia research teams work together, the combination of different skills and perspectives means that they achieve much more than they could working separately. The most transformative collaborations are often at a global scale. By combining resources, data and research opportunities from multiple nations, we can radically accelerate progress towards life-changing breakthroughs. Research crossing borders International collaboration changes what is possible, and global initiatives have already made vital contributions to dementia research. The Inter nat iona l Genom ics of A l zheimer’s P roject (IGA P) spans several nations and involves universities across Europe and the US. The initiative has brought together genetic data from tens of thousands of people with Alzheimer’s disease. IGAP has helped us to identify around 30 genes linked to Alzheimer’s risk. These cr ucia l d iscover ies have MEDIAPLANET

thrown open the doors to new avenues of research, that are paving the way to innovative approaches for tackling the disease. Some of these recent discoveries have already led to new drugs in clinical trials today. Power in numbers as families affected by Alzheimer’s support research It ’s not ju s t resea rchers com i ng together that is driving progress; people affected by dementia are also joining forces to power breakthroughs. Every July, thousands of the world’s leading dementia researchers come together to share their latest discoveries. And each year, a group of around two hundred people whose lives have been affected by Alzheimer’s disease join t hem on t heir ow n personal mission against the condition. This group comes together from different nations, generations, cultures, and backgrounds, but there is something very important uniting them. This group of families could be key to developing the first life-changing Alzheimer’s treatment.

DR CAROL ROUTLEDGE Director of Research, Alzheimer’s Research UK

In 2016, a clinical trial of a potential Alzheimer’s drug was stopped when it didn’t show benefits for people with symptoms of A lzheimer’s disease. Researchers think this was because the drug was tested too late in the disease, when too much damage had already occurred in the brain. A rare genetic mutation causes Alzheimer’s But these families are providing an important lifeline for this research. They are par t of t he Dom inant ly Inherited Alzheimer’s Network (DIAN), a study involving people from families around the world with a rare genetic mutation that causes Alzheimer’s. Researchers know at what point people with these genetic mutations will develop symptoms, so can test drugs much earlier before the disease really takes hold. With the help of these participants, doctors are now investigating whether solanezumab and two similar drugs, could prevent or slow Alzheimer’s when given to people before symptoms set in. We will see results from this study

early next year. If the trials are successf u l i n people w it h i n her ited Alzheimer’s, the drugs could, one day, benefit everyone with the disease. Collaboration is key No single country could carry out studies like DIAN and IGAP by itself. Dementia affects people in ever y corner of the world and costs the global economy US$1 trillion a year. It’s a global challenge that has to be met with concerted global action. Since A lzheimer’s Research U K s t a r te d f u nd i n g re s e a rch, we’ve supported over 230 collaborations ac ros s 2 8 cou nt r ies. B y work i ng together, and sharing the costs and opportunities of global research, we are closing in on a world free from the fear, harm and heartbreak of dementia.

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Caring for someone with dementia: the emotional impact The stresses of caring for someone with dementia can affect the carer’s emotional wellbeing and ability to look after their own health.

aring for someone can have its highs and lows and, for many, it’s also both physically and mentally exhausting. For carers of people with dementia, the complex emotions involved can often leave you feeling guilty and unable to talk to others about what you are going through. The ability to cope and look after your own health is the price you often pay.

a relative was still alive – until she saw the distress and confusion this caused. The instinct to be honest sometimes collides with the desire to make your loved ones happy, causing emotional conflict.

“Every day is different” for carers When you become a carer for a loved one with dementia, it’s hard to know how to prepare for the emotional rollercoaster that lies ahead. The unpredictability of knowing whether this will be a good or bad day can be exhausting and stressful, with little way to plan for the day – or for the future. As the person’s condition progresses and their care needs change, these additional demands can create feelings of frustration while, ultimately, more difficult decisions may yet need to be made.

“I went through a period of mourning” Meanwhile, others struggle to come to terms with the shift in the relationship dynamic, especially for children or partners who can find themselves taking on a parental role when caring. Giving care to someone who you are close to who loses the ability to recognise you can be particularly distressing. Feelings of loss, confusion and sadness are compounded by the fact that it is often impossible to communicate these emotions with the other person. While these feelings are common to many, if the carer cannot find ways to come to terms with them, they can affect their personal wellbeing – and that of the person they are caring for.

“Coping with their perception of reality” As their condition advances, many carers struggle to come to terms with the false realities their loved ones perceive. One carer explained that, at fi rst, she kept correcting her mother when she was insisting

“Talking with someone in the same boat helped” Although everyone’s story of caring for someone with dementia is unique, there are common threads weaving throughout many carers’ experiences. Many

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JANE BUTLER Senior Information Editor, Carers UK

people feel that it’s beneficial to share their experiences with others in a similar situation. Support networks (such as the Carers UK online forum) and condition-specific groups (such as Alzheimer’s Society’s Dementia Talking Point) can be helpful for the exchange of tips from people who have been there. As one carer points out: “I talk to my partner, friends, my older children, friendly work colleagues, etc.... no one else really gets it. That's why meeting other carers – those who care for loved ones while trying to live their own life – is so important.”