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. 

You 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 flag 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 technology 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. 

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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.

Historically, 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 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. 

It is extremely rare for dementia to be directly inherited from your parents.

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.

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.

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Tackling dementia and Alzheimer’s requires a more in-depth understanding of the mechanisms behind the diseases. Drug developers are partnering with leading service providers to explore new routes.

Why are there still no drugs to effectively tackle Alzheimer’s disease (AD) and dementia?

“Personally, I think it is mainly because we don’t understand enough about human biology and aging” says Antti Nurmi, PhD, Managing Director of Discovery Services at Charles River Laboratories (CRL), Finland.

Research has shown that accumulation of amyloid protein correlates with cognitive decline, and drug-induced reduction of this protein improves neuronal survival and cognitive abilities in animal models. “Expectations were that the same would happen in patients,” says Nurmi.

While some clinical trials have shown that drugs intervene with the hallmarks of AD, this has not yet led to improved cognitive ability in patients.

Drug developers are exploring what can be learned from these failures, and undertaking novel approaches towards tackling dementia and AD

“In the clinic, patients are often evaluated for their cognitive abilities using standard tests, sometimes in conjunction with imaging techniques like MRI and PET to confirm the diagnosis”. However, to date, pre-clinical assessment of cognition has largely been restricted to the use of animal models, with little emphasis on incorporating imaging technologies,” Nurmi says.

“At Charles River we are implementing clinically-relevant structural and functional imaging in animal models, to support translatable drug research for dementia and AD. There is also a key driver within our research team to find a blood- or cerebrospinal fluid-based biomarker, which would act as an early and reliable indicator of drug effects.

Nurmi believes that combining these various approaches towards dementia offers a richer picture, with increased confidence in the clinical outcome. “Such a combination is yet to be found, but as scientists we are committed to find it”, says Nurmi. 

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Do you know what happens in the brain when someone has dementia? Would you want to be told about your risk of developing dementia in later life? Can you name the key risk factors for the condition?

These are some of the questions we asked the nation in our Dementia Attitudes Monitor – an in-depth look at the UK’s attitudes to dementia and research.

Improving understanding and shaping attitudes is critical if people are to take steps to maintain their brain health, seek a timely diagnosis, and support research that has the power to end dementia once and for all. So, how much do people know about dementia and what are the misconceptions that we still need to overcome?

Understanding of the diseases that cause dementia is low

Although more than half of people in the UK have been touched by dementia, with someone close to them having been diagnosed with the condition, understanding of the diseases that cause it remains low.

Just half of UK adults recognise that dementia can cause death, despite Alzheimer’s disease and other forms of dementia now being the leading cause of death in the UK. One in five incorrectly believe that dementia is an ‘inevitable part of getting older’ and 13% say they don’t know what happens in the brain when someone has dementia.

Despite research indicating that up to a third of dementia cases could be linked to lifestyle factors that are within our control to change, only one in three people think it’s possible to reduce their risk. This is compared to 81% who realise it’s possible to reduce their risk of developing diabetes.

Appetite for information on personal risk is high

Nearly three quarters would want their doctor to tell them about their risk of developing dementia in later life.

There’s strong support for very early detection and diagnosis of diseases like Alzheimer’s too – 85% of people say they would take a test that could tell whether they were in the very early stages of dementia even before the symptoms showed. This is encouraging news as, for future medicines to be most effective, we must intervene much sooner.

There is widespread support for people with dementia being given a formal diagnosis from a doctor.

82% agree that there is value in doing so, with the most common reasons given being that it would allow people to ‘plan for their future’ and ‘access treatments that could help’.

You can get involved in dementia research

Half of UK adults would, hypothetically, be willing to get involved in medical research for dementia in the future.

This highlights a clear opportunity to engage people with the role they can play and the impact their involvement could have in making breakthroughs possible, through nationwide initiatives like Join Dementia Research.

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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.

But 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 International Genomics of Alzheimer’s Project (IGAP) 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 crucial discoveries have 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 just researchers coming 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 them on their own 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.

In 2016, a clinical trial of a potential Alzheimer’s drug was stopped when it didn’t show benefits for people with symptoms of Alzheimer’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 inherited form of Alzheimer’s

But these families are providing an important lifeline for this research. They are part of the Dominantly 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 successful in people with inherited 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 every 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 Alzheimer’s Research UK started funding research, we’ve supported over 230 collaborations across 28 countries. By working 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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The stresses of caring for someone with dementia can affect the carer’s emotional wellbeing and ability to look after their own health.

Caring 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.

“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.

“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 first, she kept correcting her mother when she was insisting 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.

“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 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.

“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 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.’”

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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?’

Future looking bright for dementia research

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 neuroinflammation.”

Cutting edge technologies

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.

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

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Contemporary research, a broader understanding of cognitive impairment and listening to the views of those living with dementia, means that care cultures are changing.

Previous 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 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]. 

[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

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If your life has been touched by dementia and Alzheimer’s, you will know that we still have a lot of work to do to change attitudes and perceptions around it.

Dementia is where cancer was 40 years ago

Many people just accept this as an unchangeable fact and in some countries the prevailing thought is that the societal obstacles are so great that we need to resign ourselves that nothing can be done.

But how great are they really? We cannot change perceptions if we don’t understand the scale of our challenge. Dementia and Alzheimer’s are at the same stage that cancer was 40 years ago. As a child I remember my family never mentioned the word cancer and the stigma surrounding it was huge. Look at where we are now; the conversation is open and community support, we all now know, is key to enable those going through cancer and bereaved families to cope with the challenges. We need to do the same to change perceptions around dementia.

Changing our attitudes towards Dementia

We at Alzheimer’s Disease International (ADI), the international NGO that works on dementia, tried to do so by releasing the largest survey ever attempted on people’s attitudes around dementia.

The survey was designed to take into account the perceptions and experiences of the general public, health and care professionals, people living with dementia and carers of people living with dementia. Adopting predominantly multiple choice questions and designed to take only about 10 minutes to complete made the survey more accessible; and making it available  in over 20 languages made it truly global.

Surveys of this kind are so important to represent the voices of people outside the dementia community, as well as those who are impacted by it daily – whether or not they are aware of it.

Safe-proofing against dementia

Only multi-sectoral engagement such as this, will help us sharpen our advocacy with governments around the world; many governments prefer not to tackle dementia and rely on the lack of a movement and of an open conversation to stay inactive on the subject.

Work such as this will also help the younger generations. We know now that there are many risk reduction factors that can decrease the likelihood of developing dementia; a healthy diet with plenty of fruit and vegetables, less meat, no smoking, staying fit, watching your weight etc. We need more public health campaigns to make more people aware of these factors but if we don’t talk openly about dementia we cannot spread awareness.

If you are interested in any of the issues I mentioned, you can read much more on our website or in our reports which are all available for free. You can also help us by following us on social media and taking part in our events. Our conferences are the oldest running conferences on Alzheimers and dementia and they showcase ground-breaking best practice in all the areas touching dementia and Alzheimer’s, such as care, psychosocial interventions, dementia friendly communities and a new strand on technology, innovation and entrepreneurship. The next international one will be in Singapore in 2020 sign up to the mailing list to receive updates

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Being outside is good for everyone’s wellbeing — and that particularly applies to people with dementia who are at risk of social isolation says Neil Mapes, CEO of Dementia Adventure.

Q: How do outdoor activities help those living with dementia?

A: There’s plenty of evidence to demonstrate the physical and emotional benefits of being outside. It’s good for our wellbeing because we’re human and hard-wired to want a connection with nature. That especially applies to people with dementia who are more likely to be isolated from society.

Q: Why do they become isolated?

A: Say you love walking your dog, cycling and going on holiday each year, but then you’re diagnosed with dementia. All those things you enjoy are taken away from you because you lose the confidence to do them. How would you feel about not being able to walk the dog because your partner was worried that you might not come back? We want people to get outdoors, connect with nature and enjoy a sense of adventure in their lives. Because there’s something magical that happens when you cross the threshold. It’s the sun on your face, a breath of fresh air.

Q: Why are supported holidays good for people with dementia?

A: Just say you get to a service station with your husband, who has dementia. He goes to the gents and you go to the ladies, but there’s a queue – so he gets out before you do and doesn’t know where you are. Then you come out in a panic wondering where he is. Those sorts of experiences are enough to stop people going on holiday.

Supported holidays rebalance the narrative of dementia being wholly negative, and focus on the things people can do if they have the right support. That gives them confidence to try new things.

Q: What new activities can people living with dementia try?

A: Kayaking or zip-wiring are just some of the activities that people may have never done before and which place them out of their comfort zone. Supported holidays can offer these types of adventure, which make smaller activities feel more manageable. When they get home, they might think: ‘We went zip-wiring last week! I’m sure we can go to the local park.’

Supported holidays are beneficial for carers, too, because they’re not solely responsible for the person with dementia, 24/7, in the way they are at home.

They can be so embroiled in occupational therapy, social work visits and benefits assessments that they forget about the simple pleasures of being outdoors together. When we’ve done training with family carers, 82% of delegates say they have more confidence to go outdoors and try new things because they’ve a more positive understanding of their situation.

Q: What benefits have you seen supported holidays give people with dementia?

A: Pure joy on people’s faces. And relief, knowing that they are not on their own because there are volunteers choosing to spend time with them, supporting them. That says a lot about how valued they are as members of society.

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