Understanding Dementia Q3 2019

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

Understanding Dementia

HEALTHAWARENESS.CO.UK

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

© ALEX WALLACE PHOTOGRAPHY

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.

Follow us

@healthawarenessUK

@MediaplanetUK

@MediaplanetUK

Please recycle

Project Manager: Lucy Harris | E-mail: lucy.harris@mediaplanet.com | Business Development Manager: Roz Boldy | Content and Production Manager: Kate Jarvis Managing Director: Alex Williams | Digital Manager: Jenny Hyndman | Designer: Kiane Blackman | Content and Social Editor: Harvey O’Donnell Mediaplanet contact information: Phone: +44 (0) 203 642 0737 E-mail: uk.info@mediaplanet.com All images supplied by Gettyimages, unless otherwise specified

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.

A

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.

H

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

2 HEALTHAWARENESS.CO.UK

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

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET © SCYTHER5

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.

B

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.

Read more at healthawareness.co.uk HEALTHAWARENESS.CO.UK 3

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET © MARTIN BARRAUD

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.

C

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

4 HEALTHAWARENESS.CO.UK

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.”

Read more at healthawareness.co.uk

MEDIAPLANET

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

What really is ‘dementia friendly’ in care?

WRITTEN BY: JO CROSSLAND Head of Dementia Care, Avery Healthcare

The stereotype of care homes for people with cognitive difficulties has been where residents had their physical care needs met by untrained staff. This is now changing.

P

revious traditional approaches to ‘dementia-friendly’ care homes frequently focused on the use of bright colours within a simplistic, often child-like environment. The aim was to stimulate, orientate and occupy residents. Once best practice, this is now recognised as less helpful to those living with dementia.

Up-to-date research reinforces that a normal and homely care environment with sensitive, well thought-out adaptations and adjustments is more supportive to a person who may be struggling to make sense of a world that is progressively unclear.1,2 A true dementia-friendly environment is simply a familiar and supportive supportive one, full of people who are friends to the resident.

Familiarity and new opportunities The stressful and emotional experience of moving into a care home should be regarded as the next stage of a person’s life rather than the end of ‘normal’ living. Familiarity and preferred routines must come

together with new opportunities for the resident and their loved ones.

Once, the focus was on keeping people living with dementia safe by protecting them from that deemed as dangerous. We now appreciate that continuing to engage in the process of life is essential to well-being, regardless of cognitive decline.

Balancing the risks that exist in everyday living against maintaining a sense of purpose and personal meaning differentiates a life where hope is lost and one where well-being is achieved.

A trained workforce is essential A skilled team that can meet the complex care and support needs of people living with dementia is essential. Without appropriate skills and knowledge, carers risk failing those who rely upon them most.

Investing in high-quality, relevant training for all staff is imperative if those living with dementia and their loved ones are to receive the very best levels of person-centred care and support possible. 3

The person remains Reflecting on the work of the late Tom Kitwood, nationally and internationally recognised as a pioneer of modern, person-centered dementia care, dementia may mask the life experiences and unique characteristics of a person, but can never remove them completely. Kitwood’s statement: “If you have met one person with dementia, you have met one person with dementia,” still serves as a valuable reminder that one approach never fits all in dementia care.4

Sponsored by

Read more at healthawareness.co.uk

1: Innes, A., Kelly, F., and Dincarslan, O. (2011) Care home design for people with dementia: What do people with dementia and their family carers value? Aging & Mental Health Vol. 15, No. 5 2: Social Care Institute for Excellence: https://www.scie.org.uk/dementia/supporting-people-with-dementia/dementia-friendly-environments/ 3: Surr, C., Gates, C., Irving, D., Oyebode, J., Smith, S.J., Parveen, S., Drury-Payne, M. and Dennison, A. (2017) Effective dementia education and training for the health and social care workforce: A systematic review of the literature. Review of Educational Research 4: Kitwood, T. (1997) Dementia Reconsidered, the person comes first. Open University Press, Berkshire

A CRITICALLY A C C L A I M E D 3 6 0º FILM SERIES DESIGNED FOR PEOPLE LIVING WITH DEMENTIA AND THEIR CARERS

SEE THE WAYBACK IN ACTION IN OUR SHORT FILM

WWW.THE WAYBACKVR.COM INFO@THEWAYBACKVR.COM INSTA/THE WAYBACKVR TWITTER/THE_WAYBACK_ T / + 4 4 (0)2 0 7 4 3 7 1 1 1 2

MEDIAPLANET

HEALTHAWARENESS.CO.UK 5

New, exciting dementia research DR MARIA HERVA Group Leader, Charles River

New directions for dementia research are opening up, and the necessary resources are already being made available.

“Dementia research is getting exciting again, with many different possibilities opening up for new discoveries,” says Dr Maria Herva, a Group Leader in the Early Discovery arm of research services provider Charles River Laboratories (CRL).

“There was a downturn in research, especially by large pharma, following disappointing results of drug trials based on the 'amyloid hypothesis' - the assumption that accumulation of the peptide amyloid-β is a leading cause of Alzheimer's.” The recurring question now is: ‘What can we learn from these failures to develop the translational strategies that prevent this happening again?’

We have to understand more about the molecular mechanisms that lead to neurodegeneration.”

Dr Herva says that this is an opportunity for a new beginning. “Things are looking brighter now, as there are many new targets for dementia coming from different ‘omics’ approaches and big data analysis. We have also seen a significant improvement in communication between academia and industry experts that can only bode well for the future.”

“We have to understand more about the molecular mechanisms that lead to neurodegeneration, including the roles of different proteins and different types of brain cells – such as astrocytes and microglia – as well as the causes of neuro-inflammation.”

At CRL, we are committed to continue investigating those mechanisms by working in partnership with our clients to progress their therapeutic programmes. We tailor our support by screening in-house and client drug libraries in custom-designed, robust biochemical and cellular assays targeting specific biological pathways,” says Herva.

CRL invests in cutting edge technologies that allows us to be at the forefront of dementia research, and on recruiting the right people to carry out that research, Herva says.

“We have motivated scientists with solid backgrounds in neurodegeneration and neuroinflammation, genome engineering, patient derived stem cells, who are driven to work to the highest Sponsored by standards, with the goal to deliver the holy grail of a disease-modifying therapy for dementia.”

WRITTEN BY: LINDA WHITNEY

Read more at healthawareness.co.uk

6 HEALTHAWARENESS.CO.UK

How technology is helping people with dementia

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

FIONA CARRAGHER Chief Policy and Research Officer, Alzheimer’s Society

Smart technology has become mainstream over the last decade, automation has moved from tomorrow’s world to today’s reality, and dementia research is reaping the benefits.

Y

ou might think it is just teenagers embracing new technology, but we know people of all ages have incorporated smart technology into their everyday lives.

More than three in four people aged 55 to 75 now use a smartphone, some for over a decade.

Scientists have recognised that the latest technology could be used to make a huge difference to the lives of people with dementia.

From smartphone apps to wearable technology and home automation, a huge amount of investment is going into developing innovative technology that will improve quality of life and enable people with dementia to live in their own homes for longer.

A new, £20 million Care and Technology Centre at the UK Dementia Research Institute, headed up by Professor David Sharp, was launched earlier this year.

Based at Imperial College London, and funded

by Alzheimer’s Society, alongside the Medical Research Council and Alzheimer’s Research UK, it is already leading the way in dementia technology.

Wearable technology for dementia Wearable technology is being trialled by people with dementia to track vital signs like heart rate, blood pressure and temperature.

Researchers are also developing ways to track key information including gait and brain activity.

Algorithms are being developed to f lag potential problems. An infection may be able to be accurately identified by raised temperature, or a change in walking pattern may identify heightened risk of a fall.

The centre's goal is to be able to monitor behaviour in the home with technology that doesn't interfere with everyday life, and use this information to intervene before people run into problems, so they can stay living in their own home for as long as possible.

Keeping people at home, where they want to be, isn’t just beneficial for people with dementia, it saves the NHS money too, by reducing emergency admissions for preventable complications like urinary tract infections, falls and dehydration.

The power of smartphone apps An award-winning app, ‘How Do I?’, developed

by Taryl Law and the How Do I? team, which Alzheimer’s Society is supporting through its innovative Accelerator Programme, is helping people with dementia by prompting them on how to carry out daily tasks, like boiling a kettle.

The app uses near-field communication technology to trigger instructional videos when a smartphone scans different objects. So if someone with dementia waved their phone over a kettle, an instruction video of how to boil it will pop up.

People with dementia can create step-by-step videos to help with daily routines; everything from preparing a favourite meal, setting the table or getting dressed in the morning.

Smart apps are also being used to gather data that can help researchers understand dementia better.

Alzheimer’s Society has worked with a team of scientists at University of Oxford’s Big Data Institute, led by Dr Chris Hinds, to develop an app with a series of games, designed to test specific aspects of memory and thinking.

Using the app, researchers will build a picture of how the healthy brain works and, in the future, use this information to identify the early signs of the condition.

Alzheimer’s Society continues to fund development of innovations like these through its annual Accelerator Programme to help more people with dementia live better.

Technology without limits?

It is clear the technology being developed has the potential to revolutionise dementia care and dramatically improve the quality of life of families affected by dementia.

But echnology will only ever be neutral. It cannot, and should not, replace human contact and the emotional support and care that friends, family and professionals can provide.

Read more at healthawareness.co.uk MEDIAPLANET

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

MEDIAPLANET

HEALTHAWARENESS.CO.UK 7

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

#ShareTheOrange We believe that through research, we can overcome dementia.

But we must also change the conversation.

Too many people still think dementia is just a natural part of ageing.

They don’t realise that Alzheimer’s and other forms of dementia are caused by physical diseases, and through research, they can be slowed.

They can be stopped.

To help set this straight, please watch and share this film about an orange.

alzres.uk/orange Registered charity numbers - 1077089 & SC042474 MEDIAPLANET

HEALTHAWARENESS.CO.UK 8