Primary Care Report – Improving Early Diagnosis of Dementia – Cambridge Cognition by Global Business Media

SPECIAL REPORT

Improving Early Diagnosis of Dementia

Features include: Dealing with Dementia: Improving Early Diagnosis Care, Support and Research Causes, Risks and the Need for an Early Diagnosis Itâ&#x20AC;&#x2122;s a Complicated Challenge Cost Can Be Controlled

Published by Global Business Media

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

SPECIAL REPORT

Improving Early Diagnosis of Dementia

Contents Foreword

John Hancock, Editor Features include: Dealing with Dementia: Improving Early Diagnosis Care, Support and Research Causes, Risks and the Need for an Early Diagnosis It’s a Complicated Challenge Cost Can Be Controlled

Dealing with Dementia: Improving Early Diagnosis

Jenny Barnett, PhD, Director of Healthcare Innovation, Cambridge Cognition

The Development of Alzheimer’s Why Timely Intervention is Vital

Published by Global Business Media

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Without a Cure What Can Be Done? Clinical Effectiveness of New Technology – CANTAB Mobile Pharmacies Helping to Improve Detection Cognitive Health at Work Acting Now For a Better Future

Care, Support and Research John Hancock, Editor

Publisher Kevin Bell

Understanding not Fear Must be the Public Attitude

Business Development Director Marie-Anne Brooks

The Pressing Need for Action

Editor John Hancock Senior Project Manager Steve Banks

Prevalence of Dementia The Wider Impact on Patients and Families

Causes, Risks and the Need for an Early Diagnosis

Camilla Slade, Staff Writer

Advertising Executives Michael McCarthy Abigail Coombes

An Early Diagnosis Will Help

Production Manager Paul Davies

Causes and Risks

For further information visit: www.globalbusinessmedia.org

It’s A Complicated Challenge

Not an Uncommon Condition

Peter Dunwell, Medical Correspondent

Many and Varied Challenges and Requirements The opinions and views expressed in the editorial content in this publication are those of the authors alone and do not necessarily represent the views of any organisation with which they may be associated.

What Might be the Causes… … and What Might be Done About Them? Screening and Diagnosis

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Cost Can Be Controlled

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Research Efforts Today

John Hancock, Editor

Counting the Financial Cost of Dementia An Early Diagnosis is a More Useful Diagnosis Making a Diagnosis

References 16

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

Foreword M

OST MENTAL and physical conditions can

get the right treatment and support and assist them

be distinguished from one another. That is

and those close to them prepare and plan for the

less so for dementia where what will usually be

future.

physical health issues can be the cause of a mental

The Report then goes on to look at the current state of

health condition. Along with that, dementia is, as

play with regards to dementia starting with an overview

yet, a bleak diagnosis inasmuch as it only gets

of the dementia landscape; what it is, who it affects,

worse. However, while finding a cure will be the

the extent of the challenge posed by dementia, what

‘holy grail’ to which we should aspire, that might be

that means and what is being done about it. Following

some way off. In the meanwhile, preventing and/

from that, Camilla Slade zooms in on the condition

or slowing the progress of dementia will be a more

itself. She looks more closely at dementia as a group

realistic objective and, in that latter aim, the sooner

of health issues with various causes and she considers

the condition can be diagnosed, the more likely it

diagnosis - especially the value of an early diagnosis,

is that appropriate steps can be taken to slow its

before setting out some of the causes of and risk

progress and to mitigate its effects on the lives of

factors for dementia. Peter Dunwell’s article considers

patients and their families.

the complexities of dementia, the comorbidities with

This Special Report opens with an article by

which it is often associated, whether leading to or

Jenny Barnett, Director of Healthcare Innovation at

resulting from the dementia itself and what they might

Cambridge Cognition. It highlights the increasing

mean for diagnosis and treatment. Finally, we consider

number of people living with dementia and the social

the costs associated with dementia, why they make

and economic impact of the disease. Worldwide,

addressing the challenge a more viable policy than

the number of people currently living with dementia

leaving it to its natural progress and a look at some

exceeds 46 million and this is expected to double

of the many initiatives that will eventually bring this

every 20 years, costing the global economies US$1

condition under control.

trillion by 2018 and US$2 trillion by 2030. The article goes on to emphasise how important it is to obtain an early diagnosis as this can help people with dementia

John Hancock Editor

John Hancock has edited Primary Care Reports since launch. A journalist for 25 years, John has written and edited articles, papers and books on a range of medical and management topics. Subjects have included management of long-term conditions, elective and non-elective surgery, Schizophrenia, health risks of travel, local health management and NHS management and reforms.

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IMPROVING EARLY DIAGNOSIS OF DEMENTIA

Dealing with Dementia: Improving Early Diagnosis Jenny Barnett, PhD, Director of Healthcare Innovation, Cambridge Cognition With spiralling costs and ever-increasing prevalence, urgent steps are needed to address the global dementia challenge. New testing technology that is sensitive to the very earliest symptoms can save time for practitioners, give reassurance to patients and facilitate timely intervention for better outcomes all-round.

DR JENNY BARNETT

VERYONE OVER 70 should have their cognitive function evaluated at least once a year. This is the consensus from an international group of leading gerontologists and geriatricians announced in September 20151. The primary reason for their concern? Dementia. It costs economies more than heart disease and cancer combined, yet relative to the cost on society as a whole, the amount of research funding is very small. Dementia may be working its way up the list of healthcare priorities, but there is still a lot of catching up to do. The social and economic impact of the disease is huge: approximately 850,000 people in the UK suffer from dementia at a cost of £26 billion a year according to the latest figures from the

Alzheimer’s Society. Worldwide, over 46 million people are currently living with dementia, a number Alzheimer’s Disease International expects to double every 20 years, costing global economies US$1 trillion by 2018 and US$2 trillion by 2030.

The Development of Alzheimer’s Alzheimer’s disease is the most common cause of dementia. Sufferers often become isolated – one third are thought to live alone2 – and the strain it places upon family, friends and carers is huge. For most people with Alzheimer’s, the earliest symptoms are memory lapses caused by damage in brain areas surrounding the hippocampus, which has a central role in everyday memory.

ALZHEIMER’S DISEASE IS THE MOST COMMON CAUSE OF DEMENTIA

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IMPROVING EARLY DIAGNOSIS OF DEMENTIA

If progress is to be made in the fight against dementia, the tools used to identify those at risk must be improved

As Alzheimer’s progresses, problems with memory loss, communication, reasoning and orientation become more severe. Some people with Alzheimer’s also develop behaviours that seem unusual or out of character, which can be hugely distressing both for the person and their carers. In the later stages of Alzheimer’s disease, someone may become much less aware of what is happening around them. They may have difficulties eating or walking without help, and become increasingly frail, eventually needing help with all their daily activities. As things stand today, less than half (48 per cent) of dementia sufferers in the UK have a diagnosis. This has serious ramifications for those affected and their families: timely intervention and treatment becomes impossible, care is delayed or absent, and patients are unable to make provisions for their future.

Why Timely Intervention is Vital An early diagnosis can help people with dementia get the right treatment and support, and help them and those close to them to prepare and plan for the future. With treatment and support, many people with Alzheimer’s are able to continue to lead active and fulfilling lives. Early detection and intervention is key to improving patient quality of life and reducing the costs of care. A recent economic evaluation of early assessment for Alzheimer’s disease in the UK concluded that every dementia patient who receives an early Alzheimer’s assessment reduces healthcare costs by £3,600 per patient and societal costs by approximately £8,0003. Some causes of memory impairment, such as anxiety and depression, delirium, vitamin deficiencies, and side effects of medications are treatable and reversible once identified. There are also medications that can help reduce the symptoms of Alzheimer’s disease. Although not a cure, these medications can make a significant difference to day-to-day living, keeping people independent longer and reducing the strain on healthcare services. These actions can only be effective with a timely diagnosis.

Without a Cure What Can Be Done? There is growing evidence suggesting that non-drug interventions may have potential to significantly slow the course of Alzheimer’s disease when identified early. New data from important longitudinal studies highlights the efficacy of simple lifestyle interventions in reducing or delaying the disease process that underlies Alzheimer’s among highrisk individuals and in improving the cognitive function of those who already have a diagnosis. 4 | WWW.PRIMARYCAREREPORTS.CO.UK

Data from the large Fitness for the Ageing Brain Study II, found patients who enrolled in a programme involving 2.5 hours of moderate physical exercise per week showed a slowing of perhaps half the expected decline over the course of the six month trial4. The Australian Imaging, Biomarker & Lifestyle Flagship Study of Ageing (AIBL) has recently shown that the deposition in the brain of amyloid, the protein thought to be responsible for Alzheimer’s disease, was noticeably slower in people who followed a Mediterranean-style diet. This is direct evidence at the brain level for an association that has long been known: that diet can have a bigger effect in reducing the risk of neurological disorders including Alzheimer’s than it does in reducing cancer or even cardiovascular disease5. There are also encouraging signs in pharmaceutical development around two betaamyloid drugs – Eli Lilly’s solenzumab, and Biogen’s aducanumab. Both appear to offer hope in altering the pathology of Alzheimer’s dementia, for the first time slowing the rate of cognitive decline when administered at the earliest stages of the disease. The next step is to run larger scale trials and to start identifying patients with mild cognitive impairment (MCI) who would be suitable for treatment.

Clinical Effectiveness of New Technology – CANTAB Mobile Pencil and paper tests that assess global cognitive function have traditionally been used to test for dementia. While these tests can identify an individual who already has dementia, they are not sensitive to the earlier stages of disease, where there is more opportunity to intervene with lifestyle changes or drug treatments. Researchers at the Mayo Clinic in Minnesota found the Mini-Mental State Examination (MMSE) to be ineffective as a screening tool and of little value to physicians in detecting people in the early stages of Alzheimer’s disease6, yet it is still one of most commonly used assessments. If progress is to be made in the fight against dementia, the tools used to identify those at risk must be improved. CANTAB Mobile is a validated iPad-based test and certified medical device allowing clinicians to improve assessment rates and timely detection of those at risk of Alzheimer’s disease by more accurately detecting the earliest signs of clinicallyrelevant memory problems. To date over 25,000 patients have been assessed using the new technology in the UK’s National Health Service. Barbara Sahakian, Professor of Clinical Neuropsychology at University of Cambridge and Past President of the British Association for Psychopharmacology, believes it is time for world bodies to lead by example and encourage

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

THE PAIRED ASSOCIATES LEARNING TASK

widespread use of more effective assessment tools. “Unfortunately, the majority of tests currently used in most healthcare settings are not sensitive enough to detect dementia early. The CANTAB Mobile test gives a sensitive and specific result at a very early stage, which is vital for choosing the appropriate interventions and treatment for patients. Early treatment with the currently available approved drugs from NICE will ensure that patients with Alzheimer’s disease will have the best possible functionality, quality of life and wellbeing.” The Dementia Programme Manager, Havering Clinical Commissioning Group, has reported that “CANTAB Mobile has acted as a stimulus to assess patients at an early stage and our dementia diagnosis rate has improved from 39% to 46%.” The touchscreen CANTAB test is simple to set up and can be administered by staff without clinical qualifications, typically taking between 7-10 minutes to complete, saving time for both patients and practitioners. The software makes use of an audio soundtrack – available in over 20 languages – which talks patients through each step. No reading or writing is required and results are automatically scored and adjusted for a patient’s age, gender and education in line with best practice recommendations. Nicola MacDougald is a Practice Manager at a surgery using CANTAB Mobile: “The use of CANTAB has been praised by patients and helped our staff to assess for dementia in a unified way. We have found the tool very easy to use and even people with no experience of tablets have found it simple to operate. When the results show no cause for concern patients are reassured instantly and being able to quickly identify patients with problems, be that depression or memory loss, is very helpful for our clinicians, allowing us

to provide patients with a plan for treatment or referral to the memory clinic in a single visit.” The screening tool has been developed using technology that has led scientific research in dementia for 30 years. The main focus of the assessment is the Paired Associates Learning (PAL) task which sensitively assesses episodic memory without language barriers and has been acknowledged as world-leading in terms of its originality, significance and scientific rigor7. Professor Trevor Robbins, CBE, Head of Cognitive Neuroscience and Experimental Psychology at University of Cambridge and one of the founders of computerised neuropsychological assessments believes CANTAB Mobile provides great hope for current and future generations: “If you can detect Alzheimer’s disease sufficiently early enough you can intervene and will eventually be able to treat before the damage is done. The Paired Associates Learning test used in CANTAB Mobile has demonstrated high specificity and sensitivity to the early stages of Alzheimer’s disease, comparable to that of brain imaging methods, making it one of the most effective ways of detecting the disease in the crucial early phases.” Often the symptoms of mood disorders such as depression can be misinterpreted as signs of Alzheimer’s, causing unnecessary concern for patients. With CANTAB Mobile, practitioners can confidently differentiate mood disorders from memory impairment using the built-in depression scale to provide a full picture of both memory performance and mood for a more accurate prognosis. Furthermore, the reported memory results are based on comparison with a large normative dataset. This allows a very accurate assessment of the level of memory performance for any individual aged 50 to 90 years. WWW.PRIMARYCAREREPORTS.CO.UK | 5

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

An important requirement of assessment tools is to empower clinicians to be able to reassure those who are worried about their memory but are in fact healthy for their age

A PATIENT TAKING THE CANTAB MOBILE TEST WITH THEIR GP

A patient’s CANTAB Mobile score is automatically adjusted to take into account their age, education and gender. Women generally make slightly fewer errors on the PAL test than men, and people who have spent longer in education tend to have slightly better scores. These effects are taken into account by the software to provide an instant and accurate report to suggest whether a patient is currently showing signs of cognitive impairment. An important requirement of assessment tools is to empower clinicians to be able to reassure those who are worried about their memory but are in fact healthy for their age. Reassuring this group of so-called ‘worried-well’ can reduce the need for further appointments or inappropriate referrals to memory clinics, resulting in major cost savings for health services and increased peace of mind for all involved. By assessing early and accurately with CANTAB Mobile, only those who are living with cognitive impairment need to be referred, avoiding any unnecessary burden on specialists, enabling them to devote their limited time to those who need it most.

Pharmacies Helping to Improve Detection A common challenge in raising dementia diagnosis rates is accessing the people who are most at risk. Without regular cognitive health screening of at-risk populations, the earliest signs of memory impairment can often go unnoticed or be dismissed by patients, relatives, or healthcare professionals. This prevents patients from accessing appropriate testing and advice during the early stages of Alzheimer’s disease and other dementias. To combat this, innovative ways of accessing those who may be at risk are being initiated by stakeholders, such as community pharmacies, strengthening their public health role. Pharmacies sit at the heart of local communities and are trusted in supporting individual, family 6 | WWW.PRIMARYCAREREPORTS.CO.UK

and community health. Pharmacists come into daily contact with patients and carers and their accessibility places them in a unique position. Earlier this year, Community Pharmacy Humber delivered a project which demonstrated the value of using CANTAB Mobile in pharmacies to help identify patients with the earliest clinically relevant signs of memory loss that might have otherwise gone undetected. “The trial in North East Lincolnshire firmly established the value of a screening service through Community Pharmacies in terms of increasing early and effective detection of memory impairment issues. The availability of the test within the pharmacy setting allowed the pharmacist to confidently refer customers to their GP with evidence of impairment rather than a simple suspicion, additionally providing a visual tool to support reassurance of the worried-well” commented Caroline Hayward, Professional Development Pharmacist at Community Pharmacy Humber. During the twelve week trial, five pharmacies administered 215 CANTAB Mobile tests and identified 108 patients with a level of memory impairment suggesting the need for further investigation by their GPs. Most of these patients admitted they were concerned about their memory but did not want to “trouble” or “waste the time” of their GP. Tim Cottingham runs one of the pharmacies that took part in the study: “The vast majority of customers we recruited into the study were happy to discuss their memory worries with us because they trusted our advice or felt more comfortable coming into the pharmacy than going to their GP. Anyone who needed to be referred was reminded as sensitively as possible that there was no need to worry, and that memory changes can be caused by a range of medical conditions that can be treated and resolved, and advised to make a follow-up appointment with their GP”.

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

PHARMACIST TIM COTTINGHAM

Cognitive Health at Work

Acting Now For a Better Future

With an ageing workforce, people are more aware of their cognitive health than ever and now realise the enormous benefits of mental wellbeing. To support companies and their health providers, Cambridge Cognition has established CANTAB Corporate Health, a collaborative initiative to improve cognitive health and wellbeing in the workplace. John Picken, health and risk management consultant at Shandwell, believes employers can also play a vital role in helping to identify neurological disorders early with the advent of more sophisticated assessment technology. “Assessing cognitive health from midlife onwards gives everyone the opportunity of knowing whether they are at risk of neurodegenerative impairment. It allows them to take control of any problem before it possibly takes control of them. By introducing the latest digital tools to a range of occupational health services, employers are in a fantastic position to change thinking in this area and encourage more positive outcomes”.

Dementia is one of the world’s most pressing healthcare issues and timely diagnosis is critical to tackling it. Progress in parts of the UK using CANTAB Mobile has demonstrated that it is possible to make vast improvements in the ability of healthcare providers in a range of settings to accurately assess and prioritise memory problems among older adults. The first steps have been taken towards encouraging timely diagnosis – it is now essential that healthcare providers and practitioners use the tools necessary for the job.

CANTAB Mobile is a certified Class II medical device for use in all healthcare settings as a triage tool for patients with mild cognitive impairment and Alzheimer’s disease. For more information visit: www.cantab.com/mobile or contact info@cantab.com.

References: 1

Morley JE, et al. Brain health: the importance of recognizing cognitive impairment: an IAGG Consensus Conference. Journal of the American Medical Directors Association. 2015;16(9):731-739.

Mirando-Costillo C, et al. People with dementia living alone: what are their needs and what kind of support are

they receiving? International Psychogeriatics. 2010;22(4):607-617. Getsios D, et al. An economic evaluation of early assessment for Alzheimer’s disease in the United Kingdom.

Alzheimer’s Dement. 2012;8(1):22-30. Cyarto EV, et al. The Fitness for the Ageing Brain Study II (FABS II): protocol for a randomized controlled

clinical trial evaluating the effect of physical activity on cognitive function in patients with Alzheimer’s disease. Trials Journal. 2010;11:120. Rainey-Smith SR, et al. APOE genotype-dependent effects of diet and physical activity on cognition and

Alzheimer’s-related pathology: data from the AIBL Study of Ageing. Alzheimer’s & Dementia. 2014;10(4):166. Tangalos EG, et al. The Mini-Mental State Examination in general medical practice: clinical utility and

acceptance. Mayo Clin Proc. 1996;71(9):829-837. Robbins TW, et al. CANTAB-PAL, a novel mobile application for detecting Alzheimer’s disease and assessing

therapeutic interventions. University of Cambridge Research Excellence Framework 2014: Impact case study.

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IMPROVING EARLY DIAGNOSIS OF DEMENTIA

Care, Support and Research John Hancock, Editor

Dementia is evolving into one of the defining healthcare issues faced by society today

Dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problemsolving or language. These changes are often small to start with, but for someone with dementia they have become severe enough to affect daily life

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Understanding not Fear Must be the Public Attitude Although it has become a word invested in popular perception as something to be feared, dementia really needs to be understood; not only among those who are living with one of the conditions grouped under the ‘dementia’ umbrella but also among the wider population who might see or know people with dementia. According to the Alzheimer’s Society1, “The word dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language. These changes are often small to start with, but for someone with dementia they have become severe enough to affect daily life.” The article continues to explain that, “The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the dementia.” Those causes vary but Alzheimer’s disease is the most common cause of dementia in which brain cells and the links between them are damaged and eventually die. Vascular dementia occurs when the oxygen supply to the brain is interrupted or reduced, often following a major stroke or series of small strokes. When brain cells develop in an abnormal manner, the resulting structures termed ‘Lewy bodies’ can also cause the death of brain cells leading to dementia while, when abnormal proteins develop in nerve cells, brain cell death can result, leading to what is known as Frontotemporal dementia. And there is sometimes more than one cause in mixed dementia. Different dementias are covered in the Alzheimer’s Society paper (above). But going back to the opening of this article, there are good reasons for everybody to understand dementia: otherwise it can be alarming. The Mental Health Foundation2 explains why. “People with dementia can become confused. Some people also become restless or display repetitive

behaviour. They may also seem irritable, tearful or agitated. This can be very distressing for both the person with dementia and their family and friends. Some people with dementia also develop other problems such as depression, disturbed sleep, aggression, language difficulties and incontinence…”

Prevalence of Dementia Dementia has always been with us but not always identified as such. In early days, it will have been conflated with other sorts of mental illness and it wasn’t until 1906 that Alois Alzheimer, a German doctor, first described the symptoms that we now associate with Alzheimer’s disease – although that term was coined later by one of his colleagues. Progress since then has not been rapid with different types of dementia being identified but no curative treatments found. However, for a number of reasons, we can hope for faster progress into understanding, managing and eventually beating most dementias in the coming years – see later. As well as knowing what causes dementia, it’s also important to know who is at risk of developing the condition. In this, we have a lot more information available. The Alzheimer’s Society’s report ‘Dementia UK’3 suggests some 850,000 people in the UK are living with dementia in 2015 – projected, in that report, to rise to over 1

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

million by 2025 and over 2 million by 2051. While the prevalence of dementia across the whole population is 1.3%, that rises to 7.1% among the over 65s. Among those with dementia, 62% of cases are caused by Alzheimer’s while 17% are vascular in origin. Growth of prevalence of dementia has been greater among black, Asian and minority ethnic groups than across the population as a whole. While these figures should provide cause for action, projections do not suggest the so-called ‘time-bomb’ that often exercises parts of the media. In fact, while numbers are increasing, that may have more to do with rapid growth in the UK population than with any overall increased prevalence of dementia cases. Two major cohort studies by Cambridge University4 supported by the Medical Research Council and published in 2013 revealed that “the number of people with dementia in the UK is substantially lower than expected because overall prevalence in the 65 and over age group has dropped.” But the reduction in prevalence rates (if not numbers) is accompanied by a reassertion of the fact that, “Prevalence of dementia in women remains higher than men, with 7.7 per cent of women over 65 estimated to have dementia, compared with 4.9 per cent of men.” and, “Although the overall prevalence of dementia has fallen, the prevalence of dementia among people living in care homes has increased, from 56 per cent of care home residents twenty years ago, to 70 per cent today.” That statistic for women is reflected in the fact that the Office for National Statistics found that dementias of all types were the leading cause of death for women in England and Wales in 2014 – they were the second cause of death among men.

The Pressing Need for Action None of this can be regarded as grounds for complacency. As Professor Hugh Perry, Chair of the Neurosciences and Mental Health Board at the Medical Research Council said

of the Cambridge studies: “This robust and comprehensive study gives us crucial information on the prevalence of dementia in the country. Of course we can’t assume that this reduction will be seen in future studies, therefore the need for us to find ways of preventing and treating dementia is as urgent as ever.” This reality is not lost on the UK Government which has5 “set an objective to be a world leader in fighting dementia and has committed to improving diagnosis, care and support, and research.” in support of which, “The UK government will invest over £300 million into UK research and medical innovation…” The truth that this UK Government stance reflects is that we are still a long way from establishing any sort of treatment. Hilary Evans, Chief Executive at Alzheimer’s Research UK6, said: “These latest figures underline a stark reality: with no treatments yet able to affect the course of Alzheimer’s and other dementias, no-one currently survives a diagnosis of dementia.”

The Wider Impact on Patients and Families It isn’t only the impact on dementia sufferers that needs to be considered, important though their needs are. A diagnosis of dementia, whatever the cause, will have an enormous impact on the patient’s family and their lives. One of the more distressing events is to learn from the authorities of some ‘out of character’ or even endangering actions by a relative with dementia as it moves from the early ‘mild’ stages to the later and more upsetting manifestations. Families go from worrying in the early stages, say, whether the patient has ‘switched off’ all that needs to be made safe before retiring to bed, to the distress in later stages of the patient no longer knowing or recognising even the closest family members or, worse, of them displaying anger and even violence towards those people. The challenge is how to recognise and manage transitions through stages in the progress of a dementia patient’s condition.

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IMPROVING EARLY DIAGNOSIS OF DEMENTIA

Causes, Risks and the Need for an Early Diagnosis Camilla Slade, Staff Writer

Without a cure, getting a grip on dementia early is the best hope to improve a patient’s condition

Another factor that crops up in many health risk lists is smoking along with high blood pressure and lack of exercise

HERE MIGHT be a number of causes for dementia but some facts enable us, at least, to make predictions about the condition, even if there is, as yet, no cure. The Mental Health Foundation7 confirms that, whatever other factors might be present, “Dementia is almost invariably a disease of ageing. Dementia in people under 65 is known as early onset or pre-senile dementia and is rare.” That said, it is not unknown: In 2013, there were 42,325 people with early-onset dementia in the UK8.

An Early Diagnosis Will Help While there is as yet no cure for dementia, as with many conditions, it is better for the patient and those around them if diagnosis is as early as possible. In that way a management programme for the condition and treatment for some of the symptoms and accompanying conditions can be put in place in good time to improve quality of life and, possibly, extend or slow progress of the causes of the condition. But prior to any diagnosis, we first need to identify and understand the symptoms. Healthline9 offers a useful list of symptoms and a caution. The caution first: memory loss does not necessarily indicate dementia; other states such as tiredness, stress, depression, side effects of medication, lifestyle choices or natural aging could be the cause. This is called Mild Cognitive Impairment (MCI) and can usually be treated (or at least the causes can) but a diagnosis of MCI might mean that an individual will be more prone to dementia. Healthline adds that a person needs to have at least two types of impairment that are significant enough to interfere with everyday life to be considered a dementia diagnosis. Other impairments might include difficulty with language, struggling to communicate, reduced ability to focus on a topic or reduced capability for reasoning.

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Finding the right words is often a difficulty in even the early stages of dementia and changes in mood or even in demeanour (say, going from shy to outgoing as judgement declines) might also be warning signs. Apathy or listlessness might follow later along with a noticeable difficulty in undertaking what should be familiar tasks and confusion over previously normal things – where the keys were left, who somebody else is, what comes next. Difficulty following storylines can be a further sign as can a failing sense of direction and repetition of words and/or actions. Early sufferers will also struggle to adapt to change and become attached to routines that can offer some certainty. As the condition progresses, there might be difficulty recalling recent events, according to the Alzheimer’s Society10, plus planning, organising or making decisions becomes more of a challenge; even tackling the stairs or interpreting the three dimensions of normal vision might become an issue. All of this can be frustrating, driving mood changes and anxiety or even a tendency to become upset or angry. Confusion, such as an inability to handle payments when shopping, might also be noted in older people.

Not an Uncommon Condition Notwithstanding all of the above, dementia can strike anybody. Perhaps one of the highest profile sufferers was former US President, Ronald Reagan whose 1994 announcement that he had Alzheimer’s disease raised public awareness of the condition. Since then, country singer Glen Campbell, author Terry Pratchett and actress Prunella Scales have shared news of their condition, which all helps to counter the fear often associated with dementia.

Causes and Risks As well as symptoms, even if no cure is yet available, some understanding of causes and risks associated with dementia will be useful.

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

SEVEN RISK FACTORS

BARNETT, J.H., HACHINSKI, V. & BLACKWELL, A.D., 2013. COGNITIVE HEALTH BEGINS AT CONCEPTION: ADDRESSING DEMENTIA AS A LIFELONG AND PREVENTABLE CONDITION. BMC MEDICINE, 11, P.246.

Causes are pretty well understood. A lack of blood/oxygen flow to the brain will lead to loss of brain cells while a head injury can also be a cause as well as pressure on the brain, as from hydrocephalus (fluid between the brain and its lining), a swelling or a tumour. An identifiable neurological disease such as Parkinson’s disease, Creutzfeld Jakob disease or an infection such as AIDS can also cause dementia. Vitamin deficiency might be a cause as might thyroid problems and, as is often the case, excess alcohol consumption over a prolonged period can damage the brain in a way that will promote dementia. These can be summarised as damage to brain cells that degrades those cells and communication between them, and, from that, the ability of whatever part of the brain is affected to function properly. The Alzheimer’s Association11 adds that, “Different types of dementia are associated with particular types of brain cell damage in particular regions of the brain.”

The same paper continues to consider the diagnosis of dementia, concluding, “There is no one test to determine if someone has dementia. Doctors diagnose Alzheimer’s and other types of dementia based on a careful medical history, a physical examination, laboratory tests, and the characteristic changes in thinking, day-to-day function and behaviour associated with each type. Doctors can determine that a person has dementia with a high level of certainty. But it’s harder to determine the exact type of dementia...” There are also ‘risk’ factors (not certainties) of which doctors might take note. We’ve already mentioned excess alcohol consumption and age, something that cannot really be managed. Another factor that crops up in many health risk lists is smoking along with high blood pressure and lack of exercise. Avoiding, moderating or taking actions against all of these are generally good but might also help to avoid, delay or control dementia, as might a well-balanced and good quality diet. Keeping socially and mentally active into later years might reduce the risk of dementia and properly managing other conditions such as diabetes is not only good but will help to avoid depression that can lead to dementia. By detecting people early, when a drug treatment becomes available, they will be first to receive it or be part of the trials to find new and effective treatments. Earlier diagnosis = better research.

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IMPROVING EARLY DIAGNOSIS OF DEMENTIA

It’s a Complicated Challenge Peter Dunwell, Medical Correspondent

Dementia does not come alone which makes its prevention, recognition, diagnosis and treatment very challenging

Many and Varied Challenges and Requirements These days, as the population ages, patients increasingly present with multiple and complex conditions. This makes diagnosis and treatment more challenging as it might not always be possible to determine a linear approach to a patient’s conditions (i.e. isolate and treat each condition in turn) but rather it will be necessary to treat multiple conditions simultaneously, which means that the impacts on other conditions of treatments for each condition also has to be taken into account. Dementia adds the further complicating factor of the patient gradually losing the ability to even communicate how they feel or what is troubling them. Plus, in the early stages at least, clinicians must be alert to the possibility that other conditions such as depression can present in very similar ways to dementia. The authors of Oxford Journals’ ‘The importance of detecting and managing comorbidities in people with dementia’12 sum up the problem, “Dementia is a debilitating condition characterised by global loss of cognitive and intellectual functioning, which gradually interferes with social and occupational performance… Dementia is most frequently associated with older people who often present with other medical conditions, known as co-morbidities. Such co-morbidities include diabetes, chronic obstructive pulmonary disorder, musculoskeletal disorders and chronic cardiac failure and are common…”

What Might be the Causes… Much of the comorbidity issue with dementia can be put down to poor self-care – a reality often found in people with low cognition. Other factors such as decreased mobility, poor diet and incontinence play their part and, of course, each type of dementia will have different nonpsychiatric conditions related to the underlying cause – Alzheimer’s, being a disease, requires medical as well as psychiatric and social 12 | WWW.PRIMARYCAREREPORTS.CO.UK

interventions but so do other conditions such as vascular issues with strokes and restricted blood supply or elevated blood pressure. And that is not the full extent of complications. Another Oxford Journals publication, ‘Nonpsychiatric comorbidity associated with Alzheimer’s disease’13 explains that, “There is a particularly strong association between Alzheimer’s disease and vascular disease as well as vascular risk factors… Although these two diseases have long been considered separate entities, increasing evidence has shown that the ischaemic damage known to cause vascular dementia is also responsible for the development of Alzheimer’s dementia, which could explain the overlap of the presence of both these diseases, known as mixed dementia.” The paper continues to examine the associations between vascular disease and risk factors and Alzheimer’s and the possibility that there might be a link with diabetes mellitus and this type of dementia. From there we move to the general association with obesity and thyroid problems as well as sleep apnoea and osteoporosis. Against this, there is evidence that Alzheimer’s sufferers seem less likely to be affected by cancer.

… and What Might be Done About Them? It’s an established view that in healthcare, as in most things, prevention is better than cure; not least, in the case of dementia, because it would save a lot of money. But prevention usually requires either a preventative medical intervention (such as prescribing statins to reduce cholesterol and some associated cardio-vascular conditions) or a change in lifestyle. Medication might well help to manage some of the comorbidities associated with dementia but cannot do the whole job. What we eat, drink and smoke will also be important and there will be a role for government to play in helping to manage these lifestyle factors

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

are increasingly presenting to their clinicians with multiple and complex conditions’.

Screening and Diagnosis

through regulation and, inevitably, investment. The Ecologist14 summarises this view, “It is high time for governments… to recognise that the answer to Alzheimer’s is to stop people getting it in the first place, and that this is where resources should be focussed. This means investing in healthy diets, regulating health-impairing trans fats, rebuilding the social infrastructure of day centres for elderly people, training care workers in keeping ageing minds active and involved, creating opportunities for the elderly to exercise and keep fit. It will all cost money – but nothing like so much as inaction.” Among those lifestyle risks, as well as the usual suspects of smoking, alcohol or drug use or abuse and excess weight, there might also be genetic factors involved. And while age is a known factor about which we can do little in the long run, it might be that retaining an active mental and physical life can help; although in all of these risks, other affecting factors also have to be taken into account. As the opening lines explained, ‘patients

One important process in the identification and diagnosis of any dementia is screening for cognitive impairment. In particular, early screening can offer enormous benefits to the patient and those around them. Patient.co.uk in its paper15 on the topic, urges clinicians to “never delay referral for memory assessment on the basis that the results are only borderline-positive or where the patient appears to be coping well unaided – this is the group of patients likely to benefit most from intervention.” Screening processes used by general practitioners can include steps such as a mini mental state examination, cognitive impairment test, a questionnaire to measure cognitive decline, a mental test and a memory test. Even prior to screening, diagnosis should include the patient’s history, a physical examination and a review of any current medication. NICE (National Institute for Health and Care Excellence) in the UK ties together all of the topics covered in this article, “At the time of diagnosis of dementia, and at regular intervals subsequently, assessment should be made for medical comorbidities and key psychiatric features associated with dementia, including depression and psychosis, to ensure optimal management of coexisting conditions.”

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Cost Can Be Controlled John Hancock, Editor

Early diagnosis can help establish a better management of dementia which, with improved research, will make the condition less of a human or financial burden

Two thirds of the cost of dementia (£17.4 billion) is paid by people with dementia and their families, either in unpaid care (£11.6 billion) or in paying for private social care

Counting the Financial Cost of Dementia According to the Alzheimer’s Society in 201416, “The total cost of dementia in the UK is £26.3 billion. The NHS picks up £4.3 billion of the costs and social care £10.3 [billion]. Of the £10.3 billion in social care costs, £4.5 billion is attributed to local authority social services for state funded care. The remaining £5.8 billion is what people with dementia and their families pay out annually for help with everyday tasks that are provided by professional care workers, such as washing, dressing and eating. Two thirds of the cost of dementia (£17.4 billion) is paid by people with dementia and their families, either in unpaid care (£11.6 billion) or in paying for private social care.” A Healthline News article17 published in October 2015 adds that, “A new study found that the cost of caring for a person with dementia is much higher than for a person suffering from heart disease or cancer.” Dementia is an expensive drain on resources at all levels from government to families and, while we might not be comfortable talking about care options in terms of pounds and pence, it is important to remember that better quality care at a lower price will bring benefits to all, especially to an increased number of patients.

An Early Diagnosis is a More Useful Diagnosis We’ve mentioned the importance of early diagnosis already in this Report but it is a fact emphasised by a range of those concerned including the NHS18 in the UK which spells it out; “Being diagnosed early can help you get the right treatments and find the best sources of support, as well as making decisions about the future.” Continuing, “A dementia diagnosis can help uncertainty.” Because many symptoms of dementia can also be pointers to other conditions, if that is the case for a given patient, the diagnosis can bring relief. Equally, although a diagnosis of dementia will be devastating news, diagnosis will be the first step to managing the condition and planning therapies and mechanisms to cope for 14 | WWW.PRIMARYCAREREPORTS.CO.UK

as long as possible plus allow the patient time to put their affairs in order and make decisions about their later care.” As part of this, “Many new models of memory assessment service are evolving – primary care or secondary care-based – involving either psychiatrists or specialist GPs with and without direct links to neurologists and learning disability services.” That is from the Royal College of General Practitioners (RCGP)19.

Making a Diagnosis This is very important because rising costs and a growing aged population might threaten to make quality treatment unaffordable; so the more that diagnosis can be improved, the better. A further RCGP paper20 adds, “In 2011, the Royal College of General Practitioners recommended the need for longer consultations, suggesting 15 minutes as the norm, to meet the demands of our ageing societies... The College has also suggested increasing the length of GP training from 3 years to 4 years… GPs will need to be both more skilled in the care of older people (a ‘GP-geriatrician’) especially those who are more vulnerable i.e. those with dementia…” A BMJ article21 on the subject is blunt, asking, “Would doctors routinely asking older patients about their memory improve dementia outcomes?” and answering, “Yes.” “Diagnosis,” the Alzheimer’s Society22 tells us, “is based on a combination of things: • Taking a ‘history’ – by the doctor talking to the person and someone who knows them well about how their problems developed and how they are now affecting their daily life; • Cognitive tests of mental abilities (e.g. memory, thinking) – simpler tests will be carried out by a nurse or doctor, more specialist tests by a psychologist; • Physical examination and tests (e.g. blood tests) – to exclude other possible causes of the symptoms; • A scan of the brain – if this is needed to make the diagnosis.” Doctors can diagnose dementia with reasonable accuracy but it is more difficult to be specific

IMPROVING EARLY DIAGNOSIS OF DEMENTIA

PRECISE DEMENTIA SCREENING ON AN IPAD

about what type of dementia is present and the best course of treatment will depend on what condition is being treated. So research into the subject is vital.

Research Efforts Today The first step is for those who determine expenditure to agree that an investment in research is worthwhile. Fortunately, the UK Government has taken that step and is committed to invest more than £300 million into UK research and medical innovation for researchers to discover the next breakthrough in the sector. Annual investment is expected to double by 2015. Additionally the UK will contribute to a $100 million international ‘Dementia Discovery Fund’. Various researchers have made discoveries that, together, might contribute to improving the early diagnosis of dementia. For instance, University College London with Alzheimer’s Research UK23 has “revealed that a change in sense of humour could be an early sign of dementia. The findings

could help improve dementia diagnosis, by highlighting changes not commonly thought to be linked to the condition.” UCL runs a ‘Dementia Research Centre’ investigating aspects of the condition. The Medical Research Council in its article ‘Spotlight on Neurodegenerative diseases: dementia’24 explains “Fortunately, new research opportunities are emerging. These combine different scientific approaches such as genetics, brain imaging, stem cell models of disease and large-scale population-based studies… A key focus of current dementia research is on disease mechanisms. Learning more about these mechanisms will help us to develop more effective treatments and, potentially, find ways of preventing dementia from developing in the first place.” There is no doubt that dementia will play an increasing part in our lives as the population ages but, pending finding a cure, managing an early diagnosis of the condition will help many people to enjoy a better quality and longer life; and that must be worthwhile.

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References: 1

Alzheimer’s Society www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106

Mental Health Foundation http://www.mentalhealth.org.uk/help-information/mental-health-a-z/d/dementia/

Alzheimer’s Society https://www.alzheimers.org.uk/dementiauk

Cambridge University http://www.cam.ac.uk/research/news/dementia-prevalence-figures-in-the-uk-show-decline-over-past-20-years

UK Parliament http://researchbriefings.parliament.uk/ResearchBriefing/Summary/SN07007

ONS/ Alzheimer’s Research UK http://www.alzheimersresearchuk.org/dementia-is-leading-cause-of-death-for-women-in-england-and-wales/

Mental Health Foundation http://www.mentalhealth.org.uk/help-information/mental-health-a-z/d/dementia/

Alzheimer’s Society https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=412

Healthline http://www.healthline.com/health/dementia/early-warning-signs#Overview1

Alzheimer’s Society www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106

Alzheimer’s Association http://www.alz.org/what-is-dementia.asp

Oxford Journals http://ageing.oxfordjournals.org/content/early/2014/07/19/ageing.afu101

Oxford Journals http://qjmed.oxfordjournals.org/content/104/11/913

Ecologist http://www.theecologist.org/blogs_and_comments/commentators/2194928/alzheimers_the_answers_lie_in_diet_and_lifestyle.html

Patient http://patient.info/doctor/screening-for-cognitive-impairment

Alzheimer’s Society https://www.alzheimers.org.uk/dementiauk

Healthline http://www.healthline.com/health-news/end-of-life-care-for-dementia-more-expensive-than-cancer-and-heart-disease-102615

NHS Choices http://www.nhs.uk/conditions/dementia-guide/pages/dementia-early-diagnosis-benefits.aspx

Progress in Neurology and Psychiatry http://www.rcgp.org.uk/clinical-and-research/a-to-z-clinical-resources/~/media/Files/CIRC/Dementia/Rasmussen-Comment-memory-clinic-article-2015.ashx

Royal College of General Practitioners http://www.rcgp.org.uk/clinical-and-research/a-to-z-clinical-resources/~/media/Files/CIRC/Dementia/RCGP-Dementia-care-in-primary-care-May-2014.ashx

BMJ http://www.bmj.com/content/346/bmj.f1780

Alzheimer’s Society www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106

UCL/Alzheimer’s Research UK http://www.alzheimersresearchuk.org/changes-in-humour-may-be-an-early-sign-of-dementia/ Medical Research Council https://www.mrc.ac.uk/research/spotlights/neurodegenerative-diseases-dementia/ 23

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