Understanding Dementia - Q3 2020

Q3 / 2020

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Understanding Dementia

We’ll break down that stigma and support research into this debilitating disease” ~ Shobna Gulati, Supporter of Alzheimer’s Research UK P4

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“Many tests, such as brain scans, cannot be carried out remotely, and there will be inevitable gaps in data for these studies” Dr Susan Kohlhaas Director of Research, Alzheimer’s Research UK

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“An estimated 8.6% of stroke survivors are living with dementia in the UK” Aaron McDonald British Heart Foundation

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IN THIS ISSUE

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“It can be difficult to find the time to take a break from caring” Helen Walker Carers UK

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Dementia research in the face of COVID-19 For dementia scientists, COVID-19 has meant finding new ways of working, both at home and in the lab. They’ve risen to the challenge, but what does the future hold?

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“We need to evolve our health services to focus on early signals of disease” Prof Craig Ritchie Brain Health Scotland

Dr Susan Kohlhaas Director of Research, Alzheimer’s Research UK

06 “Delirium often goes unrecognised and unmanaged” Dr Mani Santhana Krishnan & Sharmi Bhattacharyya The Royal College of Psychiatrists Project Manager: Kenza Mokhtari (kenza.mokhtari@mediaplanet.com) Business Development Manager: Ross Bannatyne Content and Production Manager: Kate Jarvis Managing Director: Alex Williams Head of Business Development: Ellie McGregor Digital Manager: Jenny Hyndman Designer: Thomas Kent Content and Social Editor: Harvey O’Donnell Paid Social Strategist: Ella Wiseman Mediaplanet contact information: P: +44 (0) 203 642 0737 E: uk.info@mediaplanet.com All images supplied by Gettyimages, unless otherwise specified @HealthawarenessUK

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s we rang in the New Year, few could have predicted just how tumultuous 2020 would turn out to be.

But, nine months on, almost every walk of life has been impacted by COVID-19, causing global turmoil for billions.

For scientists searching for lifechanging dementia treatments, the pandemic has brought new ways of working – both at home, and now as lockdown eases, back in the lab.

Dementia researchers are hugely innovative, and they quickly pivoted to keep their work moving when labs closed. While new experiments had to be put on hold, teams focused on collaborating virtually, analysing their data, writing up their findings and designing future experiments.

A return to the lab?

At the time of writing, some restrictions are lifting and many labs have now re-opened. With social distancing measures in place, it’s not yet a return to normal: limited space means many researchers may be working in shifts, dividing their time between home and the lab, and allowing extra time for experiments to factor in rigorous cleaning of shared equipment.

Work will necessarily be slower, but at Alzheimer’s Research UK, we’re hearing from scientists across the country who are delighted to be back at their lab benches.

For clinical studies, it’s been a mixed picture.

As the UK went into lockdown, some trials and observational studies paused completely due to safety concerns relating to COVID-19, and many clinical researchers were called on to support to frontline healthcare delivery.

Others were able to continue, albeit with constraints.

Dementia researchers are hugely innovative, and they quickly pivoted to keep their work moving when labs closed.

In some cases, it’s been possible to assess study participants from a distance using video calls, and for some clinical trials, this has allowed volunteers to spend less time at in-person appointments, now reserved for administering trial treatments. But many tests, such as brain scans, cannot be carried out remotely, and there will be inevitable gaps in data for these studies.

The need to regain momentum While COVID-19 has caused major setbacks for research, it has also hit people with dementia hard.

Over a quarter of people who’ve died in England and Wales from COVID-19 also had dementia, and there are fears that, for many people living with dementia, their rate of decline has been accelerated by social distancing measures.

All of this serves to highlight the urgent need for research to deliver breakthroughs that could protect people from further devastation.

Yet, sadly, Alzheimer’s Research UK, like many charities, is predicting a 45% drop in income as a result of the pandemic, meaning we are unable to fund as much research as we’d hoped.

It’s clear that dementia researchers have the tenacity and inventiveness to find solutions to the challenges that this pandemic has thrown up. But with fewer opportunities for talented scientists to explore new ideas that could lead to the next breakthrough, it’s also clear that now more than ever, dementia research needs our support. With the right backing, we can help that research regain momentum – and for people with dementia and their families, we must do nothing less.

Read more at healthawareness. co.uk

Paid for by University of Edinburgh

How do Alzheimer’s risk factors change the brain?

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undamental research at the University of Edinburgh is providing links between genes, lifestyle factors, and the brain changes that cause Alzheimer’s disease.

Age, risk genes, and lifestyle factors like obesity and smoking are associated with increased risk of developing Alzheimer’s disease. Our group is working to understand how these risk factors change the brain.

Risk genes damage synapses Our team discovered that two of the genes that increase risk of Alzheimer’s increase, called APOE4 and CLU, cause clumping of toxic amyloid beta protein in synapses. Synapses are connections between neurons that are essential for brain function, and loss of synapses is a strong predictor of cognitive symptoms of Alzheimer’s. Our work indicates that damaging synapses is one of the ways genes can increase risk for Alzheimer’s.

Enflamed immune cells “eat” synapses Many risk genes for Alzheimer’s are not active in neurons – the cells that do the thinking – but rather in the brain immune cells called microglia. We observe that these immune cells become inflammatory and destroy synapses.

In work funded by Alzheimer’s Society, we recently observed that the APOE4 gene is associated with more inflammatory changes in the brain.

These experiments suggest that another way risk genes influence the brain is through making glial cells more inflammatory, which causes them to “eat” synapses.

Lifestyle affects inflammation Brand new data are giving us hints that lifestyle factors may also influence the brain through inflammation. Inflammatory markers in blood samples increase with age. These inflammatory changes are associated with smoking and high body mass index and also track with poorer cognitive function during ageing.

These data link lifestyle with inflammation in the body that affects brain function as people age. We are working now to understand how inflammation in the body affects the brain, and it looks like this may be via the glial cells.

Thank you!

Many thanks to the lab team and the funders who make it possible including the Alzheimer’s Society, European Research Council, Alzheimer’s Research UK, and the UK Dementia Research Institute.

We are optimistic that fundamental research like ours will help develop life-changing treatments for dementias.

Read more at tinyurl.com/ Spires-Jones

Analysing the link between inflammation and dementia

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urrently, there is no cure for Alzheimer’s disease (AD). The efforts of the research community in the last decade have focused in targeting the cause of the disease (the presence of amyloid- plaques and neurofibrillary tangles) but the results have not been encouraging, probably because the disease has spread already in those patients and is too late to stop. So, other avenues should be pursued or we should find ways to prevent or delay the progression of the disease.

My laboratory, and others at Imperial College London, are interested in the role of inflammation in Alzheimer’s disease (AD).

It is known that processes leading to inflammation in the brain are a trigger for Alzheimer’s. For instance, patients with head injury are predisposed to suffer AD and their brains display amyloid plaques and neurofibrillary tangles.

In the Department of Brain Sciences, we are currently examining the brains from boxers as well as animal models of head injury to discover which mechanisms are involved, probably related to an increased inflammatory reaction in the brain. We can follow up these inflammatory changes by live imaging of the brains, using radioactive tracers that bind the inflammatory cells; Imperial has been pioneer in this technique.

It is believed patients with diabetes have increased risk for AD due to vascular alterations and enhanced inflammation in their brains.

The relationship between microbiomes and dementia Not only does inflammation in the brain affect our chances of developing AD, but also the bacteria in our gut, which influences our immune system. At Imperial College, there are groups analysing the metabolic profile of gut bacterial communities to understand the relationship of certain microbiomes with dementia and brain health.

Gut microbiota has been implicated in metabolic diseases such as diabetes. It is believed patients with type 2 diabetes have increased risk for AD due to vascular alterations and enhanced inflammation in their brains.

At Imperial we are studying these links using different approaches, including epidemiological studies on large prospective cohorts (conducted at the School of Public Health) and clinical trials with anti-diabetic drugs such as liraglutide.

Lastly, several groups at the Dementia Research Institute at Imperial are working on the effect of sleep deprivation, which might trigger or accelerate pathological processes leading to dementia, e.g. by causing oxidative stress or enhancing amyloid deposition.

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©IMAGE PROVIDED BY CYTOX

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Predicting the risk of cognitive decline in Alzheimer’s

Addressing challenges seen in patient care and new drug development Some of the greatest challenges in treating Alzheimer’s disease (AD) are determining who is at risk of developing AD and knowing when they are likely to experience cognitive decline. These unknowns have a major impact on two key groups of clinicians operating in AD healthcare.

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irstly, for patient-facing clinicians seeking to improve therapy and patient outcomes, it is currently not possible to assess patients for the risk of developing AD, before symptoms arise, without the use of highly invasive and expensive tests. Furthermore, little insight is available into the potential future onset of AD in people who have family members with the disease, including the so-called “worried well”.

How clinical studies would benefit from predicting AD Secondly, clinicians conducting clinical studies to develop new AD drugs would – if possible – only recruit patients that will experience cognitive decline over the period of the study.

However, no such test currently exists.

Enabling informed decisions A new test to address these issues is on the near horizon, and would enable clinicians to make more informed decisions about their patients: to identify those most suitable for clinical studies, put the worried well at ease, and encourage lifestyle changes where appropriate. Those patients that are at a high risk of cognitive decline in the near term, have the greatest opportunity to benefit from developmental drugs in clinical studies, and can make such decisions alongside their clinician.

Cytox’s genoSCORETM , a new genetic test to be launched in late 2020, aims to address these issues. genoSCORE uses a blood or saliva sample to generate a polygenic risk score (PRS), incorporating an ApoE test, to predict the risk of future onset of AD. Its simplicity would enable patients self-isolating from COVID-19 to provide a sample from home.

For more information visit: www.cytoxgroup.com/contact

Paid for by Imperial College London

Paid for by Cytox

Dr Magdalena Sastre Reader in Molecular Neuroscience, Imperial College London

Dr Richard Pither CEO, Cytox

Tara Spires-Jones Professor of Neurodegeneration, Deputy Director, Centre for Discovery Brain Sciences, Group Leader in the UK Dementia Research Institute

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Caring for someone with dementia: Taking breaks is a necessity

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Our current circumstances changed overnight just as the past became the present for my Mum.

The coronavirus pandemic has had a significant impact on families, especially on our older relatives living with dementia and family members caring for them.

Do an activity you enjoy Allocate time in your day for an activity you really enjoy – whether it’s to read, write, cook, or do some gardening. Encourage the person you care for to make time for activities they enjoy, too.

Find moments for yourself Exercising mindfulness, even just by listening to music, is a great way to find calmness and peace of mind. With help from online guidance, many people find seated exercises, yoga or dance helpful to relax too.

Support from other carers Caring can feel overwhelming at times so it’s important to know that you’re not alone. Why not join one of Carers UK’s Care for a Cuppa video chats to talk with other carers who understand the ups and downs of caring.

You may also find the Carers UK forum helpful – it’s a supportive, online community of current and former carers who can support you through everything caring has to throw at you.

Helen Walker Chief Executive, Carers UK

©DESIGN PICS

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he pandemic has been a stressful time for unpaid carers with the vast majority (70%) having to provide more care for the person they support.

Though many COVID-19 restrictions have been lifted, life remains challenging for some families needing support from face-to-face day services, such as day centres. Many are still closed and it is unclear when they will reopen again, leaving some people caring for relatives with dementia unsure about when they will next be able to get a significant break from caring.

It can be difficult to find the time to take a break from caring, but it’s vital for maintaining good health. Here are some small things carers can do that could make a big difference:

“The past became the present for my mum” Actress, Shobna Gulati, well known for her roles in Dinnerladies, Coronation Street, and Doctor Who, describes how she lost her mum to vascular dementia, and how we must work to break down stigma around it.

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um was the matriarch and lynchpin of the family. She was in control of her life, her home and, to a certain degree, her children too.

At first, the early shifts in her were so marginal that we could always find an explanation. We could put her behavioral changes down to other things like tiredness or stress. It was as though her normal character dialed up a few notches. Soon, though, our arguments seemed different – lasting for days rather than hours.

Her driving became erratic and steadfast habits and idiosyncrasies on the practicalities of day-to-day life seemed to silently, and without ceremony, disappear. In their place came stories about her early childhood; some from so far back, we discovered her anew; she’d become caught in the web of her past rather than the present, or indeed her future.

Looking back, she covered the cracks for about three years before her diagnosis. Though we knew some things about dementia, it always was something that happened to other people. We never thought it could happen to us and to our mum. When the diagnosis came, it was there in black and white: vascular dementia.

Our current circumstances changed overnight just as the past became the present for my Mum. There is so much taboo around dementia, particularly within my community. This weighed strongly on us all right up until the end as she struggled to accept her diagnosis. It was heartbreaking watching her trying and failing to come to terms with her illness.

In retrospect, it was probably less painful for her to shy away from the perceived stigma of her diagnosis than to share it.

We need to talk about dementia Talking about dementia, and the value of research, is vital to helping people, like my mum, who live in denial of what’s happening to them. We need to change their perceptions, and those of their community.

Dementia is caused by diseases, there is no shame in that. Everyone is human and at some stage in our lives we’ll all get ill and have to face our own mortality.

My hope for the future is that if we (my family) are brave enough to speak out about dementia, we might help others. And together, we’ll break down that stigma and support research into this debilitating disease.

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Stroke survivors twice as likely to be living with dementia Stroke survivors are more than twice as likely to be diagnosed with dementia than the general UK population, highlighting an urgent need for further research.

Julie Ward Senior Cardiac Nurse, British Heart Foundation

Emerging scale of conditions In total, an estimated 8.6% of stroke survivors are living with

dementia in the UK, that’s around 120,000 people. Of those who develop dementia following a stroke, around three quarters are diagnosed with vascular dementia.

Over the last decade, the number of people who have had a stroke and who are now living with vascular dementia in the UK has nearly doubled.

Although our understanding of recording dementia is improving, more research is urgently needed to find new ways to prevent and treat the disease.

Research is more important than ever Research has led to significant progress in treating heart attacks and stroke, but treatments for dementia remain limited.

Although the BHF is funding nearly £11 million of research into vascular dementia, the area has largely been neglected in the past.

Professor Joanna Wardlaw from the University of Edinburgh is leading a clinical trial into

Causes of vascular dementia Vascular dementia happens because the blood supply to part of your brain is cut off or reduced. This means oxygen isn’t able to get to your brain’s cells, causing them to die. This might occur following a stroke, a series of mini strokes (transient ischaemic attacks), or over time, due to damage to blood vessels in the brain.

When the blood supply to part of your brain is blocked or reduced, the surrounding cells die.

potential treatments for a type of stroke, called lacunar stroke, which is caused by a blood vessel problem that may also cause up to half of all dementias. It’s one of only five trials into vascular dementia worldwide.

We still have a long way to go to understanding vascular dementia. Funding research could prove crucial in finding new ways to prevent and treat vascular dementia and provide hope for the thousands of people living with the heartbreaking condition.

Read more at healthawareness .co.uk

Risk factors you can control:

High blood pressure

High cholesterol level

Poorly controlled diabetes

Smoking

An unhealthy diet

Not doing enough physical activity

Being overweight or obese

Drinking too much alcohol

Many of the factors that increase your risk of other circulatory diseases, such as stroke, also increase your risk of developing vascular dementia.

If you’ve had a stroke or have a heart condition called atrial fibrillation, which isn’t being treated, your risk is also higher.

An estimated 8.6% of stroke survivors are living with dementia in the UK.

If you’re aged 40-74 and live in England you can get a free NHS health check which looks at your risk of developing heart and circulatory diseases.

©IMAGE PROVIDED BY BHF

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magine the person you love slowly starts to forget things.

At first, it might be small, like their housekeys or their shopping list. But then, they forget their address and, in some instances, might even forget who you are. This is the cruel reality of vascular dementia.

Vascular dementia is the second most common type of dementia and occurs when there’s a problem with the blood supply to an area of your brain. The cells in this affected area of your brain don’t get enough oxygen or nutrients and they begin to die.

Vascular dementia often occurs after a stroke. In fact, stroke survivors are more than twice as likely to be diagnosed with dementia than the general UK population, according to our analysis.

Find out more about any risk factors and what you can do about them at bhf.org.uk/riskfactors 5

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No time to waste: prioritising early detection of Alzheimer’s disease

Delirium is a common symptom in people with dementia, but it often goes unrecognised and unmanaged.

Despite extensive global research efforts, to date, there are no disease modifying therapies for Alzheimer’s disease. Detecting any disease early on gives us the best chance of intervening and halting progression. ©DAISY-DAISY

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lzheimer’s disease begins with a long, preclinical phase, with damage in the brain building up gradually, many years before problems with memory or thinking emerge. This is often referred to as the ‘silent period’ of disease.

However, much like the high pitch chatter of a fruit bat or the soft, low moan of a blue whale, we experience silence only when we lack appropriate tools with which to listen. Just as employing ultrasonic and infrasound detectors reveal signals within nature that we would otherwise be oblivious to, we need to evolve our health services to focus on early signals of disease.

Scotland, under the stewardship of Brain Health Scotland, will become the first country to launch a national network of brain health clinics.

These specialised services will be proactive about prevention and ensure we extend our range of hearing beyond the narrow frequencies tuned in to by the traditional memory clinic structure.

Raising awareness of delirium and dementia Dementia is the most common pre-existing condition among COVID-19 deaths, present in a quarter of all deaths. We must continue to adapt and innovate in order to provide this vulnerable and disproportionately affected group with the support they need.

Dementia services must go on There have been fewer referrals to specialist care, largely because of COVID-19 concerns. This has sadly led to more patients in crisis and so it is essential that primary care and GPs continue to work with services so that patients get the help they need promptly, preventing further distress.

A surge in demand is expected.

Learning from the peak of the pandemic, the message is clear: we must be able to continue to assess and support those with dementia so that timely diagnoses can be made, and support provided.

Remote consultations: one size doesn’t fit all NHS services have adapted rapidly during the pandemic with much greater use of remote

Dr Mani Santhana Krishnan Chair of Faculty of Old Age Psychiatry, The Royal College of Psychiatrists

Raising awareness for delirium and dementia Delirium is a common symptom in people with dementia, but it often goes unrecognised and unmanaged. We know that patients experiencing delirium experience poorer outcomes overall. There is a real need to improve delirium detection by raising awareness in the community, in care homes and in hospitals.

Measuring brain changes To detect the presence of early disease we need biomarkers; reliable, measurable characteristics that tell us early changes are taking place in the brain. The same way cholesterol and blood pressure readings can act as a harbinger of future heart disease or stroke, we need similar

Urgent investment in dementia research needed Over 300 dementia researchers have sent a letter to the government calling for urgent action to prevent a lost generation of academics. The risk is that the pandemic has a two-fold impact for people with dementia – directly, in terms of services and health, but also indirectly, in terms of reduced funding for dementia research.

Sharmi Bhattacharyya Faculty of Old Age Psychiatry, The Royal College of Psychiatrists

methods for evaluating brain health, allowing us to pick up on any hazardous trajectories and intervene early.

Advances in brain health research have given us a detailed understanding of these biomarkers. In Alzheimer’s disease, we can measure levels of signature abnormal proteins in the cerebrospinal fluid and on specialised brain scans. Recent developments also show accurate blood tests are set to soon be ready for clinical use.

Personalising prevention The successful strategies for delaying or preventing progression of Alzheimer’s disease will be similar to current practice in managing other health issues; a combination of lifestyle changes and, for some people, a targeted drug. The important thing is that these interventions will be tailored to the individual, addressing the processes that are driving their own personal risk.

Brain research is driving our understanding of biological disease processes long before dementia. Now is the time to apply this knowledge in our health services and usher in the era of personalised prevention.

We need to evolve our health services to focus on early signals of disease.

consultations. This might be the way forward in terms of allowing dementia assessments to continue and preparing for a surge, but, unfortunately, one size does not fit all. Innovative ways of working are needed to ensure that all patients can get the support they need in a way that works for them.

©CHINNAPONG

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uring the pandemic some specialist services such as memory services had to close, or in some cases move to remote working, with staff redeployed to other areas.

Thankfully services are starting to resume, and it is vital that we prepare now for increases in COVID-19, or even a second wave, so that we can continue to deliver care for people with dementia.

Prof Craig Ritchie Director, Brain Health Scotland

@brainhealthscot www.brainhealth.scot

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Paid for by Roche

In Alzheimer’s disease, we can measure levels of signature abnormal proteins in the cerebrospinal fluid and on specialised brain scans.

How to ensure Alzheimer’s is diagnosed early – and accurately

~ Prof Craig Ritchie

Cerebrospinal fluid biomarkers can accurately predict early stage Alzheimer’s disease. The earlier the condition is detected, the better the outcomes may be for patients, says one expert.

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f you are concerned that you might be developing symptoms of Alzheimer’s disease (AD), you will understandably want a speedy and accurate diagnosis to ease your anxiety. Unfortunately, this isn’t always possible.

In fact, diagnosing Alzheimer’s disease can take years in some cases, with around 30% of dementia patients remaining undiagnosed. That can have devastating consequences says Sasha Bozeat, Senior International Medical Manager at Roche Diagnostics, because, while there’s currently no cure for Alzheimer’s disease, interventions are available that may benefit people with the condition.

“Evidence suggests that making changes to diet, while increasing exercise and social interactions, can help improve outcomes for those with cognitive impairment,” she says.

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Diagnosing Alzheimer’s disease can take years.

Why quicker diagnosis can improve patients’ lives However, timely diagnosis is of the essence because the sooner a patient makes these changes, the more impact they can have on their cognitive performance.

The problem is that a patient displaying mild cognitive impairment (MCI) may do so for a variety of reasons and, because symptoms are subtle, it’s not always clear that they will go on to develop Alzheimer’s disease.

“Healthcare professionals do a fantastic job, but it’s easy to see why early symptoms can be missed and diagnosis delayed,” says Bozeat.

Dr Sasha Bozeat Senior International Medical Manager, Roche Diagnostics

CSF testing allows a clinician to accurately predict which patients with mild cognitive impairment will go on to develop Alzheimer’s.

The additional value of cerebrospinal fluid biomarkers In particularly challenging cases where diagnosis is extremely difficult, clinicians may use a cerebrospinal fluid (CSF) biomarker to help them assess the patient; current practice is for this to happen late in the diagnostic process, something that will need to change moving forward as the reasons for wanting an earlier diagnosis grow.

A CSF biomarker involves taking a sample of cerebrospinal fluid via a lumbar puncture to identify individuals who are amyloid positive. This suggests they have increased presence of amyloid-beta in the brain, a protein that is indicative of Alzheimer’s disease.

Currently, CSF biomarkers are used sparingly, but Bozeat believes they are an important diagnostic tool that should be employed regularly. “CSF testing allows a clinician to accurately predict which patients with mild cognitive impairment will go on to develop Alzheimer’s disease and enable interventions to take place at that early stage,” she says.

“It also rules out patients who are not amyloid positive and who have MCI due to another cause, thereby triggering a different care pathway and set of interventions.”

Written by: Tony Greenway For further information and references visit healthawareness.co.uk

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million

people in the UK will have dementia by 2025 and this will increase to two million by 2050.

Find out more at: www.alzheimersresearchuk.org

Registered charity numbers - 1077089 & SCO42474