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Dementia Awareness
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CAREY MULLIGAN
“Let’s do everything in our power to make sure people don’t have to face dementia alone” P6 DEMENTIA
“I sang her a song. It was the first time I had seen her smile in ages.” Pixie Lott on her grandmother’s dementia.
A global women’s health, social care and rights issue that can no longer be ignored. P8
PHOTO: ALEX WALLACE PHOTOGRAPHY
Dementia has left us powerless for too long. Research is fighting back.
Help power our mission to bring about the first life-changing dementia treatment by 2025. www.alzheimersresearchuk.org Registered charity numbers: 1077089 & SC042474
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Clinical trials And how you can get involved to help develop Alzheimer’s research P10
NIHR Extended article with National Director for Dementia Research ONLINE
Pixie Lott Extended article with photos from celebrity charity football match for Alzheimer’s Research UK ONLINE
All of society must unite to create a world without dementia
Why dementia is now an urgent global issue and how society is working together to create a better future for people living with the condition.
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here’s no hiding from the scale of the problem. It’s set to be the 21st century’s biggest killer yet, currently, we cannot prevent, cure or even slow down dementia. At the moment our only chance of staving off dementia is a healthy lifestyle – regular exercise, a balanced diet and avoiding smoking can all help reduce your risk. Last year Alzheimer’s Society made its biggest ever single commitment to dementia research, investing £50 million into the UK’s first dedicated Dementia Research Institute. The contribution formed part of a £250 million investment that will change the face of UK dementia Follow us
research - and we’re excited to see research developments as they unfold. Unlike many other diseases, people with dementia are supported by social care – not the NHS. Decades of slashed government budgets have crippled the social care system, leaving an appalling human cost in its wake. People affected by dementia face re-mortgaging their homes to pay for care, plugging the gaps of a system close to collapse. This ‘Dementia Tax’ needs to end. Positively, every day we are seeing more people joining the growing movement of over two million Dementia Friends and over 225 Dementia Friendly Communities.
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Jeremy Hughes Chief Executive Officer, Alzheimer’s Society
Someone develops dementia every three seconds
@MediaplanetUK
Faith groups, banks and retailers are just some of the many organisations enabling people with dementia to live the lives they choose in their communities. Globally, dementia is one of the biggest challenges we face but, as more and more countries develop Dementia Friends programmes, we are tackling stigma and discrimination and helping to make a better life for people with dementia, wherever they live. But it doesn’t stop there. With someone in the world developing dementia every three seconds, we urgently need all of society to unite and help create a world without dementia.
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Alzheimer’s Disease International (ADI) would like to invite you to attend the longest running international conference that brings together all with an interest in dementia from around the world.
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How you can help scientists to defeat dementia SPONSORED
with dementia. That’s why Join Dementia Research exists - to connect researchers with people who want to participate in studies and accelerate progress.
It’s about more than participation Here are some simple ways to get involved in research that could contribute towards the fight against dementia – no scientific knowledge needed.
You needn’t be a scientist to get involved with dementia research. Anyone can join in – and here’s how. “It’s now easy for everyone to get involved in dementia research and there are many ways to do so,” says Simon Denegri, National Director for Public Participation and Engagement in Research at the National Institute for Health Research (NIHR). When asked, some 60 per cent
Simon Denegri National Director for Public Participation and Engagement in Research, NIHR
of people are willing to take part in dementia research, and now is the time: “Dementia recently became the most common cause of deaths for women in England. Patients, families and the public can take part in research to help prevent it, manage it better, and find a cure.” Only with willing volunteers can researchers explore their ideas and find ways to help people live well
As well as taking part in studies, you can now suggest areas for research, help set research funding priorities, and assist in study design. “Research is no longer confined to laboratories. Ten years ago, clinicians set research funding priorities, but now we want opinions from patients and the public,” Denegri says. “Patients and families helping design studies means money and time is not wasted on research for which volunteers will not come forward,” says Denegri. “For instance, study volunteers may say that weekly hospital visits are a burden, and less frequent hospital visits, travel funding, or
if scientists came to them, could attract more volunteers.” People can also help ensure that study information is easy to understand, and can talk to their community about dementia, and how to get involved in research.
It’s easy to join in Find ways to get involved on the NIHR website, and register with Join Dementia Research to find local research. “People who register may be invited to take part in studies, surveys and questionnaires, and all get regular updates about dementia research,” says Denegri. “It’s an easy way to get involved and help beat dementia.”
Register: joindementiaresearch.nihr. ac.uk
Standing together against dementia SPONSORED
Over 46 million people worldwide are affected by dementia and by 2030 that number is expected to rise to 75 million.
The challenge of discovering new dementia medicines is too big for a single organisation to tackle independently, so the Dementia Consortium was formed to advance new treatments for dementia arising from academic research. The Consortium is an alliance between pharmaceutical companies (AbbVie, Astex, Eisai, Lilly and MSD) and medical research charities (Alzheimer’s Research UK and LifeArc). It is driven by the collective desire to urgently
our understanding of the brain and how to slow or arrest the progression of dementia. In doing so, the Consortium is able to create better validated and more attractive scientific data that the pharmaceutical industry can use to accelerate the development of new dementia medicines. Dr David Pardoe Head of Innovation and Initiatives, LifeArc
deliver new dementia medicines to patients; so far it has evaluated 84 research projects and seven of these are currently being developed.
Offering more attractive drug candidates The Dementia Consortium fills a gap in the early stages of medicines discovery where little is really understood about the mechanisms of neurodegeneration. The Consortium funds research that increases
Global search for most promising science The Consortium seeks to combine its experience, drawn from industry and LifeArc’s Centre for Therapeutics Discovery, with the best science from researchers globally. So far the Consortium has: ■■ Developed compounds to target inflammasomes (responsible for activation of inflammatory processes) called NLRP3, thought to be a main contributor to the nerve cell damage seen in Alzheimer’s disease 1 ■■ Stimulated adult brain repair by inhibiting the protein TRIM32, which promotes neuronal stem cell proliferation2
■■ Investigated
whether the immune system regulator, fractalkine, offers protection against inflammation and cell death3 ■■ Explored clearing the build-up of a misfolded protein called TDP-43, which is thought to play a role in neuronal death4 ■■ Studied blocking the CSF1R protein to dampen the inflammatory response in the brain which could prevent disease progression.5 University of Manchester
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University of Luxembourg
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University of South Florida
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ICGEB, Italy
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University of Southampton
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For further information about the Dementia Consortium, please visit lifearc.org or dementiaconsortium.org
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INSPIRATION COLUMN
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How care can cut drugs for people with dementia By Linda Whitney
Pixie Lott Singer, songwriter and actress
Young people bring something special, says Pixie Lott How my family showed me the happiness that young people can bring into the lives of people with dementia, by singer Pixie Lott, Ambassador for Alzheimer’s Research UK. Young people can bring something special to people with dementia, says Pixie Lott. Singer, songwriter and actress, Pixie, 26, says: “My dad’s mum, Nanny Bennett, died of vascular dementia in 2014. She had been a strong woman who spoke her mind and stood up for her beliefs, but towards the end I remember dad asking her to blink if she knew we were there.” Pixie’s maternal grandmother, Nanny Martin, also had dementia. “She loved to see me sing and dance as a child but was diagnosed before my first single so never saw my success,” says Pixie. “Now the family knows a lot more about dementia symptoms and what to expect. It’s tough, but it means we also know how to help.” “Being around young people and children seems to really help people with dementia and happiness can improve health. I think that music can create that happiness too. I once called in on Nanny Bennett with my guitarist and sang her a song. It was the first time I had seen her smile in ages. I want to help more people with dementia smile - that’s why I support Alzheimer’s Research UK. The charity gives hope to those living with the condition, and their families, through the research they fund.” Pixie recently arranged a celebrity football match and pub acoustic night to raise funds for life-changing research. Younger people should not be afraid of dementia, she says. “When you first come into contact with dementia, it can be alien and worrying, but a bit of kindness and patience can make a huge difference. Telephone, visit, sing with your loved-one, look through old photographs together. Simple things can make people feel less alone.”
Simple changes cut confusion
Patient-centred dementia care and new technology can improve the lives of people with dementia, their carers, families and society as a whole, says Carers UK.
“Good quality care can transform the lives of people with dementia, their carers and families” says Emily Holzhausen, Director of Policy and Public Affairs at Carers UK. “It can help patients maintain independent lives, enable family members to keep their jobs and reduce the impact of dementia on families.” Quality dementia care can not only impact patient outcomes, but also the wellbeing of those who care for them. Holzhausen explains: “Around 6,000 people in the UK become carers daily. Most people only later realise the impacts, including isolation, loneliness, poor health and financial problems. It is not only partners who are affected: there can be knockon effects down the generations as children who support parents, and on society as a whole.”
Can care replace drugs? Australian research has shown that dementia-aware care can cut the use of antipsychotic drugs commonly prescribed to dementia patients by up to 86 per cent. Tailored support, geared towards bolstering mental
Emily Holzhausen OBE Director of Policy and Public Affairs, Carers UK
wellbeing in patients, is also yielding results. Holzhausen says: “Dementia-aware, person-centred care can reduce anxiety, agitation and depression. Music, singing and pet therapy can help, and carers can be trained to recognise the difference between distress reactions and challenging behaviour.”
Assistive technology Many carers do not realise that technology is available that can help protect people with dementia and help with care, says Holzhausen. Devices include detectors that can tell if someone is up and active, what room they are in and if someone else has entered the property; fall detectors; GPS trackers that allow you to see if the patient has wandered from home or got lost; panic buttons; and smart plugs that can send an alert, for instance, when a kettle has not been used at the usual time.
Rearranging patients’ homes can bring benefits, she says. “For instance, some dementia patients find their reflections disturbing, and changes in perception can make common household objects confusing, so simple changes can help.” Care homes designed around the needs of people with dementia can also make a difference. Holzhausen points to a Swedish project which includes small dementia-friendly homes featuring extra-wide doors, different colour codes for specific areas, and products designed to make patients’ lives easier. There are dementia care homes in the UK that feature1950s style decor and ‘shops’ stocked with products familiar to residents in their younger days. This can be a comfort to people with dementia, because while their memory of recent events can be patchy, memories from decades ago can be clear. Holzhausen says: “Caring is tough and people should get all the help they can. Find out about practical and financial support for the carer and the person with dementia, local support groups and activities, and later, if necessary, good care homes. Quality care can improve the lives of everyone affected by dementia.” Read more on healthawareness. co.uk
Care home staff must connect with residents SPONSORED
Caroline Baker, Barchester’s Director of Dementia Care, believes that getting to know individuals is key to great dementia care
Caroline Baker Director of Dementia Care at Barchester Healthcare
n a recent care home visit, I was introduced to a gentleman living with dementia, who I was told did not like speaking to new people. Yet, because I had read about his life beforehand and discovered we had both taught, visited America and shared a love of books, for example, I was able to have a
very lively and enjoyable conversation with him. Feeling connected to the people around us is essential for our wellbeing at any age. When caring for people living with dementia, who may struggle to express their thoughts and feelings, gathering details about a person’s past, present and future goals – known as ‘life story work’
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– is key to building and maintaining these connections. This is why care home providers have a responsibility to support their staff to find out what matters to each individual, document life stories and understand how to use this knowledge. Often this is done through enhanced training or by introducing activities that promote reminiscence. At Barchester, our dementia care experts have developed a ‘Getting to know me’ board game and life story booklet to help staff collate information, which can include anything from work history and religious beliefs to favourite smells or whether or not they enjoy shopping. Staff use details noted in the booklet to help tailor the services they deliver, or as a reminiscence aid. I’d encourage anyone looking into care options for a relative to write down their life story, gathering
photos and noting their preferences, routines and areas of interest. Providing care home staff with these details makes a huge difference to how quickly they can build connections and get to know the things that will make your loved one smile.
Barchester’s ‘Getting to know me’ booklet is featured in ‘Visiting the Memory Café and other Dementia Care Activities’, a newly released book written by Caroline’s team discussing activities that improve wellbeing for individuals living with dementia. Please visit barchester.com/ dementiacare for more information about Dementia Care at Barchester Healthcare.
Listen, talk, connect SPONSORED
How to communicate effectively with a person who is living with dementia
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person with dementia can live in moments of time far removed from the present. They can struggle to remember much-loved family members, yet recall experiences from decades ago – all of which can make communication a challenge. At Care UK we care for over 7,000 older people in our care homes, many of whom are living with a dementia. Families often ask our advice about how best to communicate with their loved one.
dementia. Establish where they are in that moment: if they think it’s 1955, don’t ignore them or try to bring them back to the present, join them in the moment by asking about that time. Smile, hold eye contact and nod in encouragement.
Debra Fox Lead Quality Development Manager, Care UK
Positive and meaningful communication with a person who is living with dementia is absolutely possible, and our ‘Listen, talk, connect’ guide is full of tips to help make interactions rewarding – for both of you. Here are a few tips to help you get started…
Living for the moment Not feeling listened to can be very frustrating for a person living with
Dealing with difficult requests
And remember, communication isn’t just about the conversation. We can all appreciate the simple pleasures in life, whatever our state of health - such as good food, hot baths and fresh air. Sometimes, the best way to communicate with someone is to simply do something they love doing – and you like doing with them.
If a person says they want to go home, rather than saying “this is your home now”, which may scare and confuse them, ask where home is and their memories of it. Help them to relive happy experiences.
Do what you say you will To someone living with dementia “see you later” means just that. If you don’t return “later” they can get very upset – especially if they are lonely. Think about how your words could be interpreted and try to be as literal with your choice of phrases as possible.
‘Listen, talk, connect’ is just one of Care UK’s many free guides for family carers. To browse and download our other handy guides visit careuk.com/supportfor-carers or call us on 0330 057 3741
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INSPIRATION
Love them the way you always have I have had the privilege of being an ambassador for Alzheimer’s Society for a number of years now. My grandmother, Nans, lived with Alzheimer’s for half the time that I knew her.
The first half of our time together is full of idyllic childhood memories. Baking her signature almond cherry cake together, helping her in the garden, sharing a bed with her on holidays and her rubbing my feet with her own to keep me warm on cold nights. She was intelligent, warm, generous, passionate about education, and had a cast iron set of values that informed everything she did. When we were going through her things after she passed away, we found a piece of well-known writing copied in her hand onto a piece of paper entitled ‘Success in Life’, which sums her viewpoint up better than I ever could. It reads: “He has achieved success who has lived long, laughed often and loved much; who has gained the respect of intelligent men and the affection of little children; who has left the world better than he found it, whether by an improved poppy, a perfect poem, or a rescued soul, who has never lacked appreciation of the beauty of the earth nor failed to express it, who has always looked for the best in others and given the best of what he had, who in life was an inspiration, whose memory is a benediction.” That was my grandmother. When she started showing symptoms of dementia it was a frightening and upsetting time for everyone who loved her. But it was, of course, especially terrible for Nans. She began to repeat herself, question her whereabouts, doubt her actions.
I remember writing down lists of reminders and leaving them around our house when she came to stay, “you are at Nano’s house (my mother), you came on the train, and you are here for two weeks.’ By the time I reached my twenties, Nans had moved into a care home. Over the ensuing years she communicated verbally less and less. For a woman who had previously had such command of vocabulary and conversation, this was heartbreaking. For a brief period she wanted out, wanted to go back to her home in Llandeilo where she had lived for so many years. She was understandably upset, and frustrated at losing her independence, but with time that passed. She lived in a care home in Pontardawe for 10 years and I now regard the staff in that home as family. They held our hands on a journey through a new and very different phase of Nans’ life. They showed us that by honouring the individual’s unique personality, history and character, it was possible to live well with dementia. Every resident had a biography written up in their room so that all her carers knew who it was that they were caring for. They knew the life that Nans had lived prior to coming to live there, who had been in her life, and who was in her life now. Photographs of her family, postcards and birthday cards adorned her walls. There was never a dull moment when we went to see Nans in her care home. It was a vibrant place to visit, with conversations happening (even when they were occasionally one sided), music playing, films showing, a song and dance man singing old classics. All the holidays were celebrated; it was standard fare to be greeted at the front door by a nurse wearing bunny ears or a Santa
Carey Mulligan Actress and Alzheimer’s Society’s Global Dementia Friends Ambassador
hat. Life was truly being lived in this place; differently, maybe, but it was being grasped with both hands nonetheless. The day that Nans passed away, two staff nurses came to visit her. They stayed for more than three hours, chatting to her and my mum and keeping them both company. It was their day off. A week or so later the family gathered at a chapel in Wales. It was the chapel where Nans was christened, where she had been married, and where we came to say goodbye. As I sat in the chapel and thought about my life with Nans it struck me how many beautiful memories I had and how lucky I had been to have her as my grandmother. And what occurred to me was how many of those memories were from her time living in the care home in Wales. I remembered sitting with her listening to opera music together as she tapped her hand in perfect time. I remembered my husband playing a mandolin for her when they first met and the smile on her face. I remembered whispering in her ear before almost anyone else knew that I was expecting my first child. I remembered the look of utter
contentment on her face when my mother kissed her face. I am so lucky I had those times with her, and I hold the memories as fiercely as all of those before Nans became ill. I wouldn’t sacrifice them for anything. Nans may not have been able to speak the words but the warmth and love and joy of all of those moments were as real for her as they were for me. There are 850,000 people with dementia in the UK alone – someone develops the condition every three minutes, yet too many are isolated, unsupported and lonely. Earlier this year, Alzheimer’s Society announced that there are now two million peo ple signed up as Dementia Friends, the charity’s initiative to tackle the way people think, talk and act about dementia. But we have a long way to go for all of society to be understanding and accepting of the condition, so people with dementia don’t have to struggle alone. So here is my plea. This World Alzheimer’s Day – and beyond it – let’s do everything in our power to make sure people don’t have to face dementia alone. Let’s speak up and speak out about dementia so awareness and understanding across society is improved. Let’s come together and unite against dementia. If you have a loved one with dementia, spend time with them. Love them, the same way you always have.
This World Alzheimer’s Day Carey Mulligan, Alzheimer’s Society’s Global Dementia Friends Ambassador, is urging people to tackle stigma and unite against dementia. Find out more at Alzheimers.org.uk
Let’s unite for a world without dementia As the UK’s leading dementia charity and only UK member of Alzheimer’s Disease International, Alzheimer’s Society is working tirelessly to one day find a cure. Until that day comes, we are here for anyone affected by dementia – whatever they’re going through and wherever they are. Registered charity no. 296645
Together we can take on dementia. Volunteer. Donate. Campaign for change. alzheimers.org.uk
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INSPIRATION
Stigmas facing women with dementia The economic and human cost of dementia is a global challenge. Research shows that women not only face a greater prevalence of the condition, but also shoulder the burden of care and face the greatest stigma.
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n March this year, an audience from at least 23 countries joined experts for a London event called ‘Women & Dementia: A Global Challenge’. The event examined the impact of dementia on women worldwide including the universal stigma surrounding the condition and how extreme forms of discrimination can lead to the abuse of women. Older women in particular are facing a so-called triple jeopardy, discriminated against because of their sex, age and medical condition. A recent UK study identified that women living with dementia are more likely than men to be prescribed psycho-
tropic medication that can negatively affect their physical health. Yet despite the impact of dementia on women, of the 29 countries in the world with a national plan to tackle the disease, only 12 offer gendersensitive responses. There is also no systematic data collection that separates the prevalence, diagnosis rates or impact of dementia on women. The reality is that dementia is the UK’s biggest killer of women and is in the top 10 causes of death for women worldwide. In 2018, dementia is estimated to become a $1 trillion disease; that’s a cost greater than the GDP of all but the 15 richest economies in the world. 80 per cent
Social stigma around the world
Amy Little Executive Lead, Global Alzheimer’s and Dementia Action Alliance (GADAA)
of these costs account for the unpaid and formal care for people living with dementia, two-thirds of which is delivered by women.
Sarah (not her real name) cares for her older sister who lives with advanced dementia. They live in a suburb of Bloemfontein, South Africa. Sarah has taken her young daughter out of school to help with caring duties and to save money to support the family. In common with the majority of the world, the sisters bear the brunt of a stigma against dementia, in this case manifested in a belief that the eldest sister does not have a medical condition, but that she is cursed. Due to the close, caring relationship with her sister, the family and wider community believe
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Prevention and earlier diagnosis of dementia could save taxpayers money The global cost of dementia will make it a trillion dollar disease in 2018, and already exceeds the market value the world’s largest companies including Google, Exxon and Apple.
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PHOTO: LEAH BEACH
that Sarah is also cursed – a phenomenon known as ‘courtesy stigma’. Such beliefs are common in many countries and will not be dispelled until more people join forces to raise awareness of dementia and of the 50 million people worldwide who live with condition. To mark World Alzheimer’s Day the Global Alzheimer’s and Dementia Action Alliance has released a new film featuring the actress Carey Mulligan (Alzheimer’s Society’s Global Dementia Friends Ambassador) and leading women in the field of dementia. The film tells the story of more women like Sarah, demonstrating that dementia is a global women’s health, social care and rights issue that can no longer be ignored. Watch ‘And Then I Looked Up Dementia’ gadaalliance.org/women
he World Health Organization (WHO) unanimously adopted the Global Plan of Action on the Public Health Response to Dementia 2017-2025, back in May. This followed 10 years of advocacy by Alzheimer’s Disease Internatiohnal (ADI) for a global response to the growing impact of dementia worldwide. Paola Barbarino, CEO of ADI, addressed the assembly: “[Today] marks the beginning of a new era for people with dementia and their families… The current situation is unsustainable. Dementia is becoming the most expensive disease of the 21st century and we must stop this”. The target for 2025 is to have 145 national plans. So far, only 30 of the 194 WHO member states have developed a plan on dementia. Canada was the 30th country to develop a national dementia strategy, expected to be published in 2018. Several countries have expressed their commitment to developing a national plan, including Trinidad and Tobago, Chile, Honduras, and most recently Taiwan. Governments will need to do more to dramatically increase awareness, detection and diagnosis of dementia.
Paola Barbarino CEO, Alzheimer’s Disease International (ADI)
World Alzheimer’s Month That is why the World Alzheimer’s Month campaign 2017 is focusing on spreading awareness about earlier diagnosis and prevention. This could save governments money, by reducing the high cost of emergency and avoidable health interventions, improving care, and by increasing the effectiveness of social, community and other care services. It could help the 50 million people living with dementia around the world and their care partners by ensuring they can live as well as possible for longer, and access the support they need. On World Alzheimer’s Day, we are calling on the WHO and governments around the world to sustain this surge in momentum and ensure the maximum impact of the Global Plan on Dementia. We need increased urgency for the development of additional plans and policies to tackle dementia worldwide.
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INSPIRATION COLUMN
Why you should join a clinical trial Dr David Reynold Chief Scientific Officer, Alzheimer’s Reserch UK
Dementia is set to become our leading cause of death
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his World Alzheimer’s Day, over 46 million people around the globe are living with Alzheimer’s or another form of dementia. These diseases are not an inevitable part of ageing; they are a complex set of biological processes that cause physical damage to the brain and have an enormous impact on people’s lives. Over the past decades, science has transformed outcomes for people affected by heart disease, producing drugs to successfully control HIV, and doubling cancer survival rates. Similar breakthroughs lie ahead for people with dementia, but we urgently need to bring similar research efforts to bear. For every researcher working on dementia, there are four driving progress towards better ways to tackle cancer. Alzheimer’s Research UK is addressing this imbalance by funding more and more dedicated scientists and supporting a research landscape that better reflects the enormous impact dementia has on society. But it’s not just researchers in labs who will help change lives. It will be the people with dementia who take part in research and the families that support them. The regulators who open the gates for new medicines and the doctors and nurses who deliver them. The members of the public who confront misconceptions and help us fund critical research. Without new treatments, one in three children born today will die with dementia. Everyone can help change the future by recognising the true nature of the challenge and powering research to deliver a lasting solution. Read more on healthawareness.co.uk
By Linda Whitney
The UK is playing a leading role in global efforts to tackle dementia. By taking part in a clinical trial you could help researchers find a new treatment.
“I strongly believe that clinical trials will help to deliver drugs that will transform the lives of people living with Alzheimer’s disease soon,” says Dr Carol Routledge, Director of Research at Alzheimer’s Research UK. “The ultimate aim is to discover a cure, but even a drug that delays the progression of the disease by several years would significantly reduce the numbers of people living with Alzheimer’s.” In order to hasten that discovery more, people are needed to take part in clinical trials. This is important, Routledge explains, because scientists are researching new drugs and need trial volunteers, including healthy people as well as those already diagnosed with Alzheimer’s or any of the other diseases that underlie dementia. “The type of neurodegeneration that characterises Alzheimer’s involves the misprocessing of two proteins – amyloid and tau - which trigger damage to nerve cells in the brain,” says Routledge. “Scientists can measure the levels of these misfolded proteins and are working to understand how to develop treatments to prevent the damage associated with them.” Clinical trials are underway to evaluate drugs that could intervene in this process, as
Carol Routledge Director of Research, Alzheimer’s Research UK
well as a multitude of other dementia studies looking for willing volunteers. Researchers are keen to recruit volunteers who are in the early stages of dementia. “In trials with people in the later stages of dementia, drugs under investigation have not so far shown the benefits that we’d hope for, but that may be because the damage has already been done,” says Routledge. “It’s becoming ever more important to trial drugs in people in the earlier stages of diseases like Alzheimer’s, but to do that we must be able to diagnose people earlier and this is also an important area of research.” What are the benefits of taking part in a trial? “Most people join to support research and help others,” says Routledge. “All trials need healthy control groups as well as people with a diagnosis. People who participate in clinical trials are playing a crucial role in supporting drug development and helping us to understand more about the diseases underlying dementia. All trials, even if they fail, teach us more about the
progress of the disease behind dementia, and the effects of the drugs being evaluated. No trial is wasted.” She reassures those concerned about taking part: “Trial volunteers are screened and briefed about the trial protocols and what will happen before, during and after the trial. This is important for participants providing informed consent. Research teams will always answer participants’ questions, and while it’s a good opportunity to learn about research, getting involved in studies is no substitute for visiting a doctor if you’re worried about your memory.” Anyone showing symptoms of dementia should consult their GP. “There are a number of things that can affect memory and learning, don’t be afraid to talk to the doctor, just because there is no cure for dementia yet,” says Routledge. “For people diagnosed with dementia, there are already a number of drugs that can help with symptoms in some people.” People already diagnosed with dementia or early memory problems – called ‘mild cognitive impairment’ – may be offered research opportunities through their doctor. But anyone, with or without dementia, can register their interest in taking part in research.
Register to take part at joindementia research.nihr.ac.uk Or call Alzheimer’s Research UK on 0300 111 5 111
Caring Deeply. Working Fearlessly. Changing Lives.™
Through cutting-edge science and medicine, Biogen discovers, develops and delivers innovative therapies worldwide for people living with serious neurological and neurodegenerative diseases. Founded in 1978, Biogen is one of the world’s oldest independent biotechnology companies.
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How technology can improve home-based care SPONSORED
Digitisation and artificial intelligence can improve home-based care, prevent health problems and save money, explains Dr Ben Maruthappu, chief executive of Cera, the digitally-enabled home care provider.
Digital technology and artificial intelligence (AI) can improve the quality of life for people receiving care at home – including those with dementia – and this ‘care of the future’ is becoming available now. The digitisation of care services can bring immediate benefits for people who receive care, their loved
Dr Ben Maruthappu Chief Executive Officer, Cera
ones, carers and healthcare professionals. It can also save money, as home-based care can be up to four times cheaper that a care home.
The benefits of digitisation For clients, digitisation brings benefits even before their care is delivered. It allows for a more personal experience, as care providers can digitally match clients and care
workers according to the type of care needed, where and when that care is delivered, and even the preferred language. It is also faster: care can be arranged and carers supplied within the same day. End-to-end digitisation means care workers can use mobile phones to record details such as what form of care has been provided, which medications have been given and the client’s health, for immediate transfer to the care provider’s head office. Clients’ families can also access the password-protected records to monitor their loved one’s condition. Where clients approve, details can also be shared with their GP and hospital staff, so healthcare providers can get involved in home care more easily and quickly. Efficiencies and savings delivered by digitisation also allow for better pay for care workers: Cera pays its care workers 50 per cent more than the average.
Artificial intelligence saves suffering and money AI can be used to monitor and improve clients’ health. It can be used to predict health deterioration, enabling early preventive action. For instance, when a client alerts a care worker of the first symptoms of a urinary tract infection, this is noted in the digital care record. The AI system analyses existing trends and, if necessary, alerts the client’s GP, who can issue a digital prescription for antibiotics to be collected by the care worker. Patients need not endure symptoms for days before diagnosis and early treatment can avoid hospitalisation, which costs the NHS more money. Cera is currently trialling such a system, and expects to roll it out across its network in 2018. Read more on ceracare.co.uk
Bringing magic moments to people living with dementia SPONSORED
How design and neurological research are being combined to create ‘magic table’ games that break through passivity and bring moments of happiness to people living with dementia.
As a child John Ramsay knew the heartbreak of dementia. “My dad developed early onset dementia aged 52, when I was 12. I helped care for him. It was painful but I buried the experience,” says John. Later, as a corporate lawyer, John visited Holland and discovered the Tovertafel (magic table) device developed by his friend Hester Le Riche, a Dutch woman with a PhD in Industrial Design Engineering. It aims to stimulate physical and cognitive
activity and social interaction in people with dementia, and break through the passivity that dementia can bring. “When I saw people sitting around a table using their hands, eyes and minds to play with moving, interactive light images I thought it would have been wonderful to have this kind of interaction with dad.” John gave up his well-paid job in The City to found a company bringing the device to the UK, where it is now used in around 100 care homes. Hester, the game’s designer, studied the neuropsychology of play experiences and the neuropathology of Alzheimer’s disease, which follows a standard path. “I designed games for people with mid-to-late stage dementia, when patients are capable of appreciating above all sensory stimulation, relaxation and reminiscence. This means no one finds the games frustrating or disappointing, and they deliver a positive experience each time.” In the Leaves game, for instance, a gust of wind blows projections of
leaves on to a table and players brush them off, using their hands and eyes and evoking memories of walking on the garden path. Studies have shown that the games produce positive results in the areas of emotion, social interaction and physical activity and Tovertafel is shortlisted for the National Dementia Care Awards as an Outstanding Dementia Care Product. Other games have been developed to suit adults with learning disabilities and children with autism, and
John wants to encourage young people to go into care settings and play the games with residents. Hester says: “We want to expand their use, and I want to design a similar solution for lesser developed countries, to bring more moments of happiness to care home residents.”
Read more on tovertafel.co.uk