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Dementia Explained A comprehensive guide to what dementia is and how it can affect you Types of Dementia Signs and Symptoms Treatments

We’ve don e the researc h for you.


Contents Introduction

Chapter 1: The Big Four

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Chapter 2: Other Types of Dementia

Chapter 3: What Causes Dementia?

Chapter 4: Is Dementia Hereditary?

Chapter 5: Diagnosing Dementia...

Chapter 6: Drugs and Dementia

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Chapter 7: Therapies for Dementia

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Chapter 8: The Big Questions

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Chapter 9: Famous Faces of Dementia

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What is Unforgettable.org?

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Unforgettable.org 2017 All content and images are copyright of Unforgettable Content written and edited by Kate Corr with contributions from the Unforgettable team


Introduction Hardly a day goes by without dementia being mentioned in the news. But how much do you really know about the condition that currently affects more than 850,000 people in the UK — a number expected to rise to more than a million by 2025. Unforgettable.org has compiled this guide to sort the facts from the fiction. Dementia Explained provides you with all the essential information you need about the main types of dementia, how they are diagnosed, common treatments to ease symptoms, and potential future treatments and cures. We’ve also answered some of your most pressing concerns about whether dementia is hereditary, can it be prevented and possible life expectancy after diagnosis. So whether you know someone with dementia (42 per cent of the UK population say they do), are living with it yourself or just want to be more informed about the condition, we hope this guide will help you.

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Dementia is… •

The general term used to describe a wide range of symptoms that occur when brain cells stop working properly. The main symptom of dementia is usually memory loss but there can be many other symptoms too, including communication and language problems and changes in personality.

A progressive condition which means it gets worse in time, though it usually progresses quite slowly — over years — rather than months depending on which form of dementia you have been diagnosed with and what caused it.

Diagnosed via various tests which can be carried out by a doctor or dementia specialist working in a memory clinic or hospital. Although there is no cure for dementia — yet — there are many ways that may help slow down the progress of the condition including drug treatments, natural and psychological therapies and creative activities.

Dementia is NOT… •

A normal part of ageing — occasional lapses in memory might be part of the ageing process but dementia is more serious than this. It is a condition which damages the brain.

The same as Alzheimer’s. Alzheimer’s disease is the most common form of dementia but it isn’t the only one. In fact there are around 200 different types of dementia including Vascular dementia, dementia with Lewy bodies, Frontotemporal dementia (sometimes called Pick’s disease), or a combination of more than one form called ‘mixed dementia.’

A condition which only affects old people — younger people can get dementia too (although it is quite rare). When someone under 65 is diagnosed with a form of dementia it’s called early-onset or young-onset which can sometimes be hereditary.

A mental illness — dementia is caused by damage to the brain, the damage can often be seen on brain scans so it isn’t ‘in the mind.’ However, a diagnosis of dementia can also cause depression which, in turn, can lead to further memory problems.

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10 Symptoms of Dementia There are some very distinct early symptoms of dementia. These are the signs you should look out for:

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Memory loss that’s affecting everyday life

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Losing conversation threads

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Forgetting the names of everyday objects

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Misplacing items or putting them back in the wrong place

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Difficulty judging distances or colours

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Confusion about a time, place or route home

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Problem solving and planning difficulties

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Lack of judgement

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Mood changes

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Becoming less sociable


Chapter 1: The Big Four There are more than 200 different types of dementia but the most common forms are Alzheimer’s, Vascular dementia, dementia with Lewy bodies and Frontotemporal dementia. They’re often referred to as ‘the big four.’ 1. Alzheimer’s Alzheimer’s is a neurological disease that causes brain cells to die. As the chemistry of the brain changes, mild memory loss and confusion often begins to occur which, in time, gets worse. •

Alzheimer’s is the most common form of dementia. Around 60 per cent of the 850,000 people in the UK with dementia have Alzheimer’s. Alzheimer’s is named after Alois Alzheimer, the German pathologist who first discovered it.

Alzheimer’s is usually considered a disease of old age since the vast majority of people who get it are over 65. In fact, the likelihood of developing it doubles every five years after you reach 65. But it is not just a part of normal ageing.

Alzheimer’s can also affect younger adults (aged 30–60) but this is rare. Only around 5 per cent of people with Alzheimer’s are thought to have the ‘early-onset’ form of the disease.

What actually happens? Every person’s experience is different, but at first the symptoms may be so mild you hardly notice them or might put them down to something else, such as tiredness, age or depression. Gradually, the person with Alzheimer’s may find it difficult to remember recently learnt information such as the name of a new grandchild, or a doctor’s appointment. As the disease moves to different parts of the brain, they may become disorientated, getting lost on their way to a local shop, or becoming uncharacteristically irritable or angry. The confusion slowly becomes more noticeable until eventually it impacts on daily life.

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Could this be YOU? Although no-one knows for sure what actually causes Alzheimer’s, you have more chance of developing it if; •

Several members of your family have had it

You have a history of heart disease or depression

You’ve had a head injury or whiplash

You have Down’s Syndrome

If you recognise yourself, or a loved one, in any of the symptoms or information here it’s definitely worth talking to your GP or confiding in someone you trust. For while it’s true that there is no cure — yet — for Alzheimer’s, there are treatments that can really help, so the earlier it’s diagnosed the better.

Did you know? What is the difference between Alzheimer’s and dementia? Alzheimer’s is a disease, dementia is the umbrella term used to describe a collection of symptoms that occur when the brain cells stop working properly. You might also hear it described as a condition. Alzheimer’s is the most common form of dementia. Of the 850,000 people in the UK who have dementia, around 500,000 of them have Alzheimer’s.

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2. Vascular Dementia Vascular dementia is the second most common form of dementia in the UK. It’s caused by problems with the supply of oxygen to the brain. People who have Vascular dementia will usually have suffered a series of small strokes, (known as ‘mini strokes’) often so small they’re hardly noticeable. The strokes cause damage in the brain which results in dementia.

What actually happens? The mini strokes cause tiny but widespread damage to the brain. At first, people with vascular dementia may have difficulty thinking clearly, planning or remembering seemingly familiar words. But symptoms vary widely, depending on which part of the brain has been affected by the stroke. Sometimes memory loss is slight, while trouble understanding speech or ‘finding the right words’ is more apparent. However, the more strokes a person has, the worse their symptoms may become.

Who is most at risk? Vascular dementia is age related — it’s rare in anyone aged under 65 and commonly affects those between 65–75 (more men seem to develop it than women). It’s also more common amongst those of Asian, Black and Caribbean ethnicity. You also have a higher risk of developing vascular dementia if you have: •

Diabetes

Heart disease

Sleep apnoea

Cardiovascular disease (this includes high blood pressure, high cholesterol and being overweight)

Or if you’ve already had a stroke

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3. Dementia with Lewy bodies Dementia with Lewy bodies (DLB) was only officially recognised as a form of dementia in the mid 2000s. It’s named after Dr Frederich Lewy who first discovered it and although it shares many similarities with Alzheimer’s, people who have DLB tend to experience dramatic, unpredictable swings from clarity to confusion from hour to hour or day to day, rather than a slow, steady decline. •

Dementia with Lewy bodies is the third most common form of dementia, and at least five per cent of people aged over 85 are thought to have it, though it is generally under-diagnosed.

Dementia with Lewy bodies is often associated with Parkinson’s disease and shares similar symptoms, such as muscle movement causing difficulty with balance, as well as hallucinations.

The Lewy ‘bodies’ are abnormal bits of protein which form inside brain cells, clog them up and stop the brain working properly.

What actually happens? Hallucinations can be one of the first symptoms of dementia with Lewy bodies, and you may see colours, shapes, animals or people that aren’t there. Some people develop a shuffling walk, tremors, stiff limbs, dizziness, fainting and falls. Confusion and memory loss may follow but aren’t usually one of the first signs of dementia with Lewy bodies. Sleep difficulties and depression are also quite common. As the disease gets worse, people who have dementia with Lewy bodies will need more help with day-to-day living.

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Here’s the science Lewy bodies are deposits of abnormal proteins inside brain cells. These deposits (or ‘bodies’) build up in areas of the brain responsible for things such as memory and muscle movement and disrupt the brain’s normal functions by interfering with chemical signals transmitted from one brain cell to another. Could this be YOU? Dementia with Lewy bodies is under diagnosed so if you recognise yourself, or someone you know, in any of this information it makes sense to get it checked out. Although there is currently no cure, some symptoms respond well to treatments in the short term at least, making it possible to live life well.

Good to know • Research is ongoing but there is some evidence that a drug called Rivastigmine, which is routinely prescribed for Alzheimer’s, can also help with DLB. Although it isn’t licensed yet to treat dementia with Lewy bodies, it could still be worth talking to your GP about it. • On good days, people with dementia with Lewy bodies can be very alert and have less difficultiesmoving around...so make the most of them with interesting activities or pastimes. • Hallucinations are somethimes very frightening for the person experiencing them and for anyone who happens to be with them.

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4. Frontotemporal dementia (Pick’s Disease) Frontotemporal dementia (FTD) is rare, affecting around 16,000 people in the UK, however it’s one of the main causes of dementia in younger people. Unlike other forms of dementia, it usually doesn’t cause memory problems at first so it can be difficult to diagnose. It also tends to run in families much more than other types of dementia. •

Around 15 per cent of people with FTD have a strong family history of it.

FTD is most often diagnosed between the ages of 45–65 though it can affect older people, too.

Around 10–20 per cent of those living with FTD will also be affected by a motor disorder, such as motor neuron disease.

Did you know? Frontotemporal dementia used to be called Picks disease, named after the German scientist Dr Arnold Pick who first described the disease (in 1892) and its abnormal proteins in the brain (the ‘Pick bodies’).

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What actually happens? Frontotemporal dementia attacks a different part of the brain to Alzheimer’s and therefore causes different symptoms. Behaviour and personality changes are often the first, most notable symptom and for this reason it can often be mistaken for depression at first. For example, the person affected may seem distant, lost or cold, they may have severe mood swings, lose their inhibitions, become obsessional or crave sweet, fatty food. But sometimes difficulties with language (slow, hesitant speech) or vocabulary (trouble remembering everyday words) are the first signs that something is wrong. As the disease progresses all of these symptoms become more blurred.

Here’s the science Frontotemporal dementia damages two lobes in the brain, called the frontal lobe and the temporal lobe. The frontal lobe controls behaviour and emotions, and the temporal lobe controls the understanding of words. The damage itself is thought to be caused by clumps of abnormal proteins called ‘Pick bodies’ which clog up and kill nerve cells in these lobes, leading to shrinkage in the brain issue.

Good to know Scientists are currently researching new ways to treat frontotemporal dementia. Find out how to get on a clinical trial in Chapter 5.

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Chapter 2: Other Types of Dementia Alongside the ‘big four’ dementias are several others you may have heard about. 1. Mixed Dementia A diagnosis of mixed dementia means that you have more than one type of dementia. The most likely combination is of the two most common forms; Alzheimer’s and Vascular dementia. However, mixed dementia can involve other types too, such as dementia with Lewy bodies. •

At least 10 per cent of people with dementia are diagnosed with mixed dementia, although scientists now believe it may affect far more than this.

Mixed dementia may become more common with age.

Mixed dementia is difficult to diagnose. In fact, a diagnosis of mixed dementia is more likely to come during a brain autopsy, than during life.

What actually happens? Many people with mixed dementia might not know they have it as the numerous brain changes it involves are so difficult to detect. Instead, they will probably be diagnosed with the type of dementia that most matches their symptoms, which is often Alzheimer’s.

Here’s the science The most common form of mixed dementia (Alzheimer’s and vascular dementia) will involve brain changes associated with the abnormal protein deposits of Alzheimer’s (amyloid plaques) as well as the typical blood clots of vascular dementia. If dementia with Lewy bodies is also part of the diagnosis its key characteristics (ie the abnormal ‘Lewy body’ protein deposits) will also be present. Sadly, the true extent of the damage caused by mixed dementia in the brain can currently only be revealed during autopsy, but research is ongoing.

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Good to know •

Although there’s no specific treatment for mixed dementia, scientific studies have shown that it responds well to the same medications as those given for Alzheimer’s disease.

As research continues to grow, it’s likely that mixed dementia will be increasingly diagnosed – and treated – during life.

2. Young Onset Dementia Dementia mainly affects older people, but it can occasionally affect those under 65. Although very distressing and difficult to accept, most people with young onset dementia find that a diagnosis can make life easier in the long term because it means they can begin to access the right treatment and support. •

Of the 850,000 people in the UK currently living with dementia, only around five per cent are under 65.

One third of those with young onset dementia have Alzheimer’s, and around 20 per cent have Vascular dementia. A further 20 per cent have a rarer form, such as one associated with Parkinson’s disease or Huntington’s disease.

One in 10 people with a learning disability develop young onset Alzheimer’s or dementia.

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What actually happens? This largely depends on which form of dementia a young person has, but symptoms usually begin with memory loss, difficulty concentrating on simple tasks they used to find easy (such as following a recipe or paying a bill), problems with driving or joining in a conversation. But because dementia is so rare in younger people, it’s often mistaken for something else at first, such as stress or depression. GPs often don’t feel confident about making a diagnosis themselves and may refer you to a specialist for tests and assessments.

Here’s the science We still don’t know why young people get dementia, though young onset Alzheimer’s does seem to run in families and have a genetic link. Scientists believe that a genetic mutation in one of three genes the APP, PSEN 1 or PSEN 2 may mean you are at a higher risk of developing Alzheimer’s before the age of 65. Good to know •

Although it may seem a scary prospect, diagnosis could actually take away a lot of stress and uncertainty and allow you to get the right treatment and support, while taking control of your own future. You could also get on a clinical trial.

Life doesn’t stop when dementia starts. Many younger people continue to work after they’ve been diagnosed and remain a vibrant, essential part of their family and community.

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3. Korsakoff syndrome Korsakoff syndrome is a dementia-like condition usually associated with a chronic misuse of alcohol. Although Korsakoff syndrome does lead to memory loss, it can be treated very successfully and in some cases a full recovery is possible. •

Korsakoff syndrome accounts for 10 per cent of dementia in younger people aged 45–65, and affects more men than women.

Korsakoff syndrome is caused by a chronic lack of vitamin B1 (thiamine) which affects the brain and nervous system.

Although alcohol misuse is the most common cause, weight disorders such as anorexia nervosa, can also cause Korsakoff syndrome since they also deplete the body of important vitamins.

Did you know? Korsakoff syndrome is named after the Russian neuropsychiatrist Sergei Korsakoff who discovered it in the 19th Century. What actually happens? Heavy drinking depletes the body of essential vitamins, including vitamin B1 (thiamine), which is necessary for a healthy brain and nervous system. Eventually, the brain and nervous system can’t work properly, resulting in memory loss and other symptoms such as poor balance, jerky eye movements and changes in personality. If these symptoms appear gradually they can be difficult to spot and treat. However, if they come on suddenly and are correctly diagnosed, a quickly administered high dose injection of thiamine can have remarkable results, sometimes leading to a full recovery.

Here’s the science Alcohol can cause widespread damage to nerve cells and blood vessels leading to damage and shrinkage of the brain. However Korsakoff syndrome and other so-called ‘alcohol-related dementias’ do not always result in a slow, steady decline, since vitamin injections, improved diet, support and abstinence can halt further deterioration and even result in improvements. For this reason, scientists now prefer to call Korsakoff syndrome and other similar conditions ‘alcoholrelated brain damage’ rather than dementia. 16


Good to know Korsakoff syndrome isn’t only treatable, it’s also preventable by cutting right down on alcohol and improving your diet to include lots of foods rich in vitamin B1. 4. What is Posterior Cortical Atrophy Posterior Cortical Atrophy (PCA) was only discovered in 1988 and remains relatively rare. PCA usually affects people aged 50–65 and often starts by causing complex visual problems, rather than confusion or memory loss. Scientists aren’t sure if Posterior Cortical Atrophy is a form of Alzheimer’s or a unique disease. Research is ongoing. •

Posterior Cortical Atrophy is the form of dementia that author Sir Terry Pratchett was diagnosed with, aged 59.

PCA is often misdiagnosed because it’s so rare. So while studies suggest around five percent of people diagnosed with Alzheimer’s disease have PCA, some experts believe it could be as many as 15 per cent.

Posterior Cortical Atrophy (PCA), is also known as Benson’s syndrome, after Dr Frank Benson who first described it in 1988.

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Here’s the science PCA is a neurodegenerative disease that damages the back (posterior) of the brain known as the occipital lobe. This part of the brain is responsible for vision. The amyloid plaques and neurofibrillary tangles of Alzheimer’s disease are thought to cause the damage, which is why PCA is often considered to be a variant of Alzheimer’s disease.

Did you know? Researchers are still trying to establish a standard definition and diagnostic criteria for Posterior Cortical Atrophy.

What actually happens? People who have Posterior Cortical Atrophy (PCA) normally experience changes in vision, they’re often unable to see objects that they know are in front of them, or can see details but not the bigger picture — they’re able to see ‘the tree but not the forest.’ This gradually impacts on daily life, affecting driving, reading, writing, and numeracy (which are controlled by the back part of the brain). Memory loss and confusion only tend to happen later on in the journey — perhaps after a few years.

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Good to know •

There is no specific medical treatment for Posterior Cortical Atrophy, but drugs for Alzheimer’s disease can be helpful.

Since memory remains intact for quite some time, many people with Posterior Cortical Atrophy retain personality and insight, and can talk as fluently and coherently as they always have, which can be some comfort to them and their loved ones. For this reason, PCA is sometimes considered one of the ‘better’ forms of Alzheimer’s or dementia to be diagnosed with.

What are neurodegenerative diseases? The term ‘neurodegenerative disease’ covers a whole range of conditions all resulting in the loss of nerve cells and the gradual decline in the brain’s ability to keep going. •

Alzheimer’s, Parkinson’s, Huntington’s disease, Motor Neuron disease and Creutzfeldt-Jakob disease are all classed as neurodegenerative diseases but Alzheimer’s is the most common, accounting for around 60–70 percent of cases.

There are hundreds of other lesser known neurodegenerative diseases, including Amyotrophic Lateral Sclerosis (ALS) which is the most common form of motor neuron disease. However, research so far has been focused on three; Parkinson’s, Huntington’s and Alzheimer’s.

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Here’s the science Neurodegenerative diseases are caused by abnormally shaped proteins in the brain which stick together in clumps and fibres. When enough of these proteins build up, they can trigger a reaction which results in the death of nerve cells.

What actually happens? Neurodegenerative diseases lead to progressive brain damage, which affects many of the body’s activities, such as moving, talking and memory. Each of the diseases has its own medications and treatments — which are improving rapidly — designed to relieve pain and improve quality of life.

Good to know •

Scientists are currently investigating the possibility of treating several neurodegenerative diseases, including Alzheimer’s and Parkinson’s, with the same drug. Although the research is still in its infancy, tests on animals have been encouraging.

There’s always reason to hope. When world renowned scientist Professor Stephen Hawking was given the devastating diagnosis of ALS as a young man he was given two years to live... more than 50 years ago!

Is there a link between dementia and motor neuron disease? Motor neuron disease is a rare, devastating condition that damages the nervous system and leads to paralysis. A small number of people who have motor neuron disease are also diagnosed with a specific type of dementia called frontotemporal dementia which tends to affects personality and behaviour. •

Both motor neuron disease (MND) and frontotemporal dementia (FTD) are neurodegenerative diseases and are thought to be caused by a faulty gene.

Around 15 per cent of people with frontotemporal dementia will also develop motor neuron disease.

There are several forms of MND, the most common is called ALS (amyotrophic lateral sclerosis). However in the USA they use ALS to mean MND, which can cause confusion!

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What actually happens? If someone with motor neuron disease is going to develop dementia it usually happens fairly early on. At first, symptoms may be so mild that they’re hardly noticeable, for example, they might lose concentration when reading the newspaper. Sadly, symptoms do usually become more obvious quite rapidly, and can include changes in behaviour. Feeling restless, binging on sweet food, or acting impulsively, are some of the most common symptoms.

Good to know Many people with motor neuron disease do not develop dementia, while some may experience very mild changes in thinking and memory which aren’t related to dementia.

Here’s the science Toxic protein fragments that damage and destroy brain cells are thought to be the main culprits in both frontotemporal dementia and motor neuron disease. Scientists have recently discovered that an unusual genetic mutation in the C9orf72 gene could be responsible for causing both diseases.

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Chapter 3: What Causes Dementia? Why do some people get dementia while others don’t? A great deal of progress has been made in dementia research, but unfortunately all the causes of dementia are still not fully understood. This chapter explains some of the known and suspected reasons why people get dementia. The Main Causes of Dementia Dementia is caused by damage in the brain, which makes the brain cells degenerate and die more quickly than they would normally. This damage can lead to problems with memory, changes in personality and general difficulties with everyday living. •

The most common causes of the brain damage that leads to dementia are neurodegenerative diseases, such as Alzheimer’s, dementia with Lewy bodies and frontotemporal dementia.

A restriction in blood supply to the brain can also cause the brain damage that leads to dementia. This is called vascular dementia.

There are other less common causes of dementia or dementia-like symptoms too, such as head injuries, alcohol misuse, lack of vitamin B, and depression (though some of these are treatable and can even be reversed).

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What actually happens? Exactly how dementia progresses will differ from person to person and can depend largely on the type of dementia you are diagnosed with. The most notable symptom of many types of dementia — particularly Alzheimer’s — is memory loss, however this isn’t always the case. For example, a person with frontotemporal dementia may not have too much difficulty remembering things but may seem cold and withdrawn, or behave in a way that seems out of character. In most cases dementia symptoms will get worse, but don’t panic because this can take a long time — and there are lots of ways to manage the symptoms and continue to live your life.

Here’s the science A build-up of abnormal proteins in the brain is to blame for most types of neurodegenerative dementia (such as Alzheimer’s and dementia with Lewy bodies). In Alzheimer’s, these proteins are called ‘plaques and tangles.’ In dementia with Lewy bodies and frontotemporal dementia (Pick’s disease) the proteins are called ‘Lewy bodies’ and ‘Pick bodies’ after the scientists who first discovered them. Vascular dementia however is caused, not by abnormal proteins, but by a restriction in blood flow to the brain, usually in the form of a stroke. The Good News Research into what is happening in the brains and nerve cells of people with dementia is growing rapidly. Scientists are confident that a drug to significantly slow the progress of the most common types of dementia — or even cure them — will be available within ten years.

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What are the risk factors for dementia? No-one can predict with certainty whether they’ll get dementia, though research suggests some people are more likely to develop it than others. While increasing age is the most common risk factor (and there’s nothing you can do about getting older!) there are plenty of other risk factors you can do something about. Follow the advice below and you could cut your risk of developing dementia quite considerably. •

By the age of 80, one in six people will have dementia.

A family history of dementia can make you more prone to developing it in later life, but your chance of inheriting a ‘dementia gene’ is extremely rare.

Medical conditions such as strokes, heart disease, high blood pressure, head injuries, diabetes, multiple sclerosis, HIV, chronic kidney disease and Parkinson’s can also increase your risk of developing dementia.

Did you know? Some research has suggested that people who suffer from depression or who are underweight could also be at higher risk, but this research isn’t conclusive and more evidence is needed.

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Your 5-Step Plan A large UK study has revealed some fascinating insights into the effects of ageing on the brain. The study, by researchers at Edinburgh University, followed 1000 men for 30 years (from their 40s to their 70s) and found that those who followed these five simple lifestyle choices reduced their risk of developing dementia by as much as 36 per cent. •

Give up smoking.

Take regular exercise (this could mean a 30 minute brisk walk 3–5 times a week).

Reduce the amount of alcohol you drink (heavy drinking can lead to a loss of brain tissue).

Follow a Mediterranean type diet containing oily fish, nuts seeds and olive oil.

Reduce your risk of diabetes (which is also associated with dementia) by losing weight if you need to and by following all the other advice above.

Don’t panic If you smoke, drink heavily, rarely take any exercise or eat lots of junk food there’s plenty you can do to help yourself now — it’s not too late.

Good to know •

Since head injuries can also be linked to dementia (especially if you’ve had more than one), you should always wear protective gear (including safety helmets) while taking part in sport.

Research suggests that people who read regularly, or do crosswords or puzzles, are less likely to develop dementia than those who don’t, but further research is needed.

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Can strokes cause dementia? Strokes and dementia are both diseases of the brain and while evidence suggests strokes can cause dementia it’s still unclear whether dementia can increase the risk of strokes. •

Having a stroke more than doubles your risk of developing dementia

30 per cent of people who have a stroke then develop dementia

After a stroke people can develop vascular dementia, mixed dementia or a combination of vascular dementia and Alzheimer’s

What actually happens? A stroke interrupts the blood supply to the brain. Many people who’ve had a stroke may feel confused and disorientated for weeks or months afterwards, though this is often temporary. However, if the symptoms continue for at least three months after the stroke happened it’s more likely that they have also developed dementia.

Could this be YOU? The risk factors for stroke and dementia are the same, they include having: •

Diabetes

Epilepsy

An irregular heartbeat

Or if you’ve had a heart attack or a stroke in the past

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Here’s the science For decades, strokes and dementia were treated as entirely separate conditions, but scientists now understand they are often interwoven together. Research in this area is ongoing, as experts begin to untie what they describe as ‘the tangled knot of stroke and dementia’.

Good to know You can help yourself. Giving up smoking, eating a healthy diet, taking exercise and cutting down on alcohol can reduce your risk of having a stroke and of developing dementia.

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Can Parkinson’s cause dementia? Parkinson’s disease alone does not cause dementia but it can increase your chances of getting it. Dementia is more common in people who have Parkinson’s than those who don’t, although it is also influenced by age. Dementia rarely affects young people who have Parkinson’s, but those over 70 are at a higher risk. •

About half of people with Parkinson’s disease develop dementia at some point.

There are two types of dementia associated with Parkinson’s, they’re called Parkinson’s dementia and dementia with Lewy bodies.

A slow shuffling walk is one of the three classic symptoms of Parkinson’s (alongside tremors and stiff rigid muscles). Recent research suggests that those who develop this walk may be more likely to also develop dementia.

What actually happens? Dementia in Parkinson’s disease can bring different challenges to other types of dementia. Memory problems are still present but usually less severe than in people with Alzheimer’s disease. People who have Parkinson’s and dementia can become more passive, find it difficult to concentrate, develop false, fixed ideas and have sleep problems.

Good to know Many of the symptoms of Parkinson’s dementia are similar to depression, so don’t jump to conclusions too quickly if a loved one seems to have any of these symptoms. Do confide in someone if you’re concerned because there are a range of treatments and medications designed to help you both.

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Chapter 4: Is Dementia Hereditary? If someone in your family has dementia you might be worried about developing it yourself. Or perhaps you have been recently diagnosed and are concerned about what this could mean for your own children or grandchildren. This chapter explains the connection between genetics and dementia. The Hereditary Factor Dementia can be inherited, but it usually isn’t. Most people who get dementia don’t have a family history of it at all. Plus, there’s a big difference between inheriting a gene which may slightly increase your chance of getting dementia, (which can happen) and inheriting a gene which will definitely cause dementia (which very rarely happens). •

Alzheimer’s usually isn’t inherited but an extremely rare form of young-onset Alzheimer’s called familial Alzheimer’s disease can be passed on from one generation to the next. This accounts for only one per cent of Alzheimer’s cases.

Dementia caused by Huntington’s disease also involves a specific gene which is passed on through families.

Around 20–50 per cent of people with frontotemporal dementia have inherited it from a close family member.

Here’s the science Genes are involved in some forms of dementia – particularly the rarer types – and research in this area is growing all the time. For example, scientists now know that the three genes causing the young-onset inherited form of Alzheimer’s are called APP, PS1 and PS2 and it’s possible to identify them through genetic testing.

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Can I be DNA tested for dementia? There are several different DNA tests available, either privately or through your GP, which can reveal your likelihood of inheriting one of the main types of dementia, such as Alzheimer’s or frontotemporal dementia. However, you need to think carefully before having a DNA test for dementia because the results are rarely 100 per cent accurate — and may even raise more questions than they answer.

Fact If you have a family history of frontotemporal dementia or young-onset Alzheimer’s disease, it might be possible to discover through a DNA test whether you also carry the specific defective genes (sometimes called mutations) which are responsible for these diseases. This sort of DNA test is called a ‘predictive’ test. BUT If you do find that you have these faulty genes they can’t, sadly, be repaired – yet. So simply knowing about them might only cause you to worry. It’s really important therefore to take advice. Start by going to your GP, he should then refer you for genetic counselling at your nearest regional genetic centre, usually based in a hospital. 30


What is genetic counselling? Genetic counselling is not the same as psychological counselling. Your counsellor will be a health care professional who is an expert in genetics. He will explain more about what the test involves, give you an idea of the kind of result it might show and what that result could mean to you or your family. But he will not make a decision or try to influence you one way or another. You are entitled to genetic counselling before having a genetic test.

Did you know? Results from genetic testing for dementia cannot currently be used against you by insurance companies and shouldn’t therefore affect your ability to plan ahead financially. A temporary agreement to stop insurance companies using the results of genetic tests was put in place in 2001 in order to protect people from discrimination. The agreement ends in 2019, and its unclear what will happen after that.

Fact Personal DNA testing kits which claim to reveal anyone’s chance of developing Alzheimer’s disease or dementia are now widely available to buy over-thecounter or online. Their proponents say that it’s better to know your risk of dementia — and then make some positive lifestyle changes that could actually reduce it, such as giving up smoking, taking more exercise or eating healthily. BUT Experts remain sceptical about the accuracy and worth of these tests, and say that anyone who is worried about inheriting dementia can take simple steps to reduce their risk anyway — without needing to buy a DNA test.

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We’ve done the research for you. Genetic testing is available on the NHS if: •

You’ve already been diagnosed with young-onset Alzheimer’s or frontotemporal dementia (both of which can be linked to faulty genes) and want to find out if you do, in fact, have one or more of the faulty genes involved.

You have a family history of young-onset Alzheimer’s or frontotemporal dementia and would like to know if you also carry one or more of the faulty genes.

Genetic testing is NOT available if you have: •

Vascular dementia — this isn’t considered a hereditary form of dementia.

Dementia with Lewy bodies — although research seems to suggest that this form of dementia may be linked to genetics.

Late-onset Alzheimer’s — the most common form of dementia. However, if you want to find out if you have one of the genes associated with late-onset Alzheimer’s (the most wellknown is called APOE but there are many more) you could buy an over-the-counter DNA testing kit.

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Good to know Try not to worry if someone in your family has had dementia, as this doesn’t mean you will definitely inherit dementia. For example, if your loved one was 80 years old when they developed it, there may not be a family connection since advancing age is usually one of the greatest known risk factors. Even if there is a family link of some sort, it’s far more likely that you have inherited a ‘risk gene’ rather than one which will definitely cause dementia, and there are plenty of simple ways you can reduce your risk of developing it.

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Can dementia be prevented? The simple answer is that it depends on what's causing the dementia symptoms in the first place. This can range from neurodegenerative diseases to nutritional deficiencies. While there are numerous causes of dementia, the good news is that taking steps now can, in some cases, actually help reduce your chances of developing it quite significantly.

Vascular dementia It’s slightly easier to reduce your chances of developing vascular dementia because the causes are more commonly related to lifestyle choices and general health. People who have high blood pressure (hypertension), smoke, have a poor diet, high blood cholesterol, don’t exercise, are overweight or obese or drink too much alcohol are all at a higher risk of developing vascular dementia.

What can you do? Taking steps to avoid these — in the same way as you might try to avoid other health conditions such as heart disease or diabetes — could help.

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Korsakoff syndrome This particular dementia is closely linked to drinking alcohol and alcoholism. That’s because people who drink tend to have a poor diet, which is the main cause of the syndrome. Plus, drinking alcohol interferes with the absorption of this vitamin.

What can you do? The good news is that you can slow down and even stop Korsakoff syndrome by detoxing, abstaining from alcohol, eating a healthy diet and taking high doses of vitamin B1. By taking these steps, most people see an improvement in symptoms within two years. It’s thought that about a quarter of those affected make a very good recovery. About half make a partial recovery and need support to manage their lives, but may still be able to live in their own homes. A further quarter make no recovery and generally need long-term residential care.

Nutrient deficiency Dementia-like symptoms, including memory loss and confusion, can occur as a result of not having enough B vitamins, not just vitamin B1, but also B6 and B12 in their diet. This could be caused by a generally poor diet. Dehydration can also cause confusion and memory problems.

What can you do? Boost your vitamin B levels with a supplement, and with vitamin B-rich foods in your diet. These include pork, poultry (such as chicken or turkey), fish, bread, wholemeal cereals — such as oatmeal, wheat germ and brown rice, eggs, vegetables, and soya beans.

Infections Urinary Tract Infections can cause dementia-like symptoms, such as memory loss and confusion, in elderly people. Therefore, it’s important to recognise if this is a problem, and that the infection is treated — most commonly with antibiotics. Other infections including brain infections such as meningitis and encephalitis, untreated syphilis, and conditions that cause a compromised immune system such as leukaemia can also cause dementia-like symptoms.

What can you do? Get infections diagnosed and treated as swiftly as possible. If they are bacterial, they can usually be treated with antibiotics. Viral infections may be trickier to treat.

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Thyroid and metabolic problems People who have thyroid issues (such as hypothyroidism) can suffer memory problems. Likewise, hypoglycaemia (low blood sugar) can also lead to symptoms of dementia.

What can you do? Both of these issues can be treated with the right kind of medication, so it’s important that they’re properly diagnosed by your GP.

Depression and anxiety There is a strong link between both depression and anxiety and memory issues.

What can you do? Treatments for these issues can vary, depending on their severity. They may require a combination of medication, therapy and lifestyle changes. However, the good news is that they can be treated, which will hopefully then have a positive effect on any memory problems.

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1

Eat a healthy diet

2

Exercise

3

Stay socially and mentally active

4

Reduce your alcohol intake

5

Stay well hydrated

6

Boost your vitamin B intake

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Get urinary tract infections treated as quickly as possible

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Get treatments for thyroid disorders

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Try talking therapies to help with depression symptoms

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Find time to relax and reduce stress

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Chapter 5: Diagnosing Dementia... Diagnosing dementia takes time and can involve several tests and brain scans. But it’s important not to worry too much about it while the tests are underway. Although it may be upsetting, an early, accurate diagnosis is still considered by most to be the best way for you to get the treatment and support you deserve, so that you can continue living well for years to come. The Journey to Diagnosis Most people start by visiting their GP (often with a friend or relative) but if your symptoms are mild you could be referred to a specialist who knows more about dementia, such as a neurologist, an old age psychiatrist or a geriatrician.

Did you know? •

Dementia is our biggest fear in later life. According to a UK poll by Saga, a diagnosis is scarier, for people over 55, than developing cancer.

•

Research shows that around 75 per cent of people who have dementia worldwide have not received a formal diagnosis.

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Good to know A diagnosis of dementia may come as a severe shock, and feelings of anger, loss, sadness and grief are totally understandable. However research suggests that a diagnosis, when done sensitively, can also come as a relief. Many people say they felt ‘reassured’ that they were not ‘losing their mind’ but instead had a recognised, fairly common condition. A diagnosis also allows you to take control of your own future rather than simply worrying about it. • If you are diagnosed with something called ‘mild cognitive impairment’ it means that you may be in the very early stages of dementia but don’t have enough symptoms to prove a formal diagnosis yet. Or it could mean that your current difficulties are caused by another condition, such as depression and there’s a very good chance they could improve as you recover.

1. Mini Mental State Examination (MMSE) A memory assessment called a Mini Mental State Examination (MMSE) usually forms part of the initial diagnosis but try not to get stressed about this. It’s nothing like any test or ‘exam’ you might have taken before — there’s no ‘pass or fail’. It’s simply designed to give the doctor a clearer idea of the kind of problems you might be having.

What happens during the MMSE test? Despite having a long and rather scary name, an MMSE simply involves your doctor asking you a few questions which are designed to reveal any particular memory issues you might be having. The whole ‘test’ takes around ten minutes.

What are the questions? The questions themselves are quite simple. For example, you could be asked what the date is, how to spell a simple word (such as ‘world’ or ‘house’) or you might be asked to remember three words, then repeat them back a few minutes later. Sometimes you can be asked to draw a picture — maybe of a house, a clock or a face. The questions may seem a bit random and odd but they’re actually quite carefully constructed to assess different areas of brain function such as orientation (date, time, year) or recall. The drawing tasks assess visual-spatial skills, planning and organisation.

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How you are scored and what it means The mini mental health state examination is scored out of 30. A score of: • 27–30 usually means your memory is normal • 10–26 could indicate mild to moderate dementia Less than 10 suggests you may have quite severe symptoms of dementia. It’s important to remember that whatever your score it doesn’t mean you definitely have — or haven’t — got Alzheimer’s or any other kind of dementia. The MMSE is only one part of the diagnosis journey. Whilst it can be effective, it can’t always detect subtle memory losses and isn’t 100 per cent accurate.

For example, the MMSE doesn’t take into account: •

Education — people who are highly educated tend to do better in the MMSE than those who aren’t, regardless of whether they have dementia or not. So a high score could be misleading.

Cultural differences — if English isn’t your first language or you aren’t familiar with certain areas of British life (sometimes you can be asked questions such as ‘who is the current Queen of England?’) your score may suggest a higher degree of difficulty than you actually have.

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The good news Whether it’s carried out in your doctor’s surgery, at a specialist memory clinic or in a hospital, the MMSE has considerable benefits when it comes to working out your care plan. For example, you could find that you’re entitled to certain drug treatments which might slow down the progress of your condition. For example, a score of 10–26 usually means you could be offered a drug called donepezil (you might know it as Aricept), or rivastigmine (Exelon) or galantime (Reminyl). A lower score could mean you’re entitled to a drug called memantine (Exiba).

What happens now? If you have dementia, the MMSE can also be used to check how you’re doing. So don’t worry if your doctor or specialists want you to do another test in a few months’ time or a couple of years down the line. If your score has changed, it’s better to know because they might then be able to suggest different treatments which could be more effective, and help you to continue living well and enjoying life. Your doctor may also send you for a blood test or brain scan to get a strong diagnosis confirmation.

2. Blood Test Can a blood test show I’ve got dementia? Blood tests can reveal a huge amount about you. They’re often carried out at different stages of the dementia journey and for many different reasons. If dementia could be detected via one simple blood test it could make diagnosis quicker and make what is a tough process a little simpler. Although a test isn’t currently available, scientists are making great progress and other blood tests, which might reveal more about certain symptoms or genetics, are being used — with good results.

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Blood tests are carried out as part of the dementia diagnostic process. For example, your GP might give you a blood test to check your overall health and to rule out other conditions that might be causing symptoms which are similar to dementia, such as thyroid problems or a vitamin B12 deficiency which can be a sign of pernicious anaemia.

Here’s the science Blood is made up of a fluid called plasma which contains red blood cells, white blood cells, platelets and proteins. Red blood cells contain a chemical called haemoglobin. If you have a vitamin B12 deficiency, a blood test could reveal that you have less red blood cells than normal, or that you have less haemoglobin. Blood tests to reveal thyroid problems are called thyroid function tests and are carried out to check how well the thyroid gland is working. They do this by revealing hormone levels (hormones are chemicals which are released into the blood stream). One of the first thyroid function tests measures the levels of a hormone called thyroid stimulating hormone (TSH) in your blood. Blood tests are also used for genetic tests which can reveal, for example, if someone has the defective genes usually present in frontotemporal dementia or young onset Alzheimer’s.

Here’s the science Genetic blood tests look for abnormalities in DNA, particularly gene mutations which can cause permanent change to DNA. Mutations to some genes, such as the Tau gene or the PGRN gene are thought to increase the risk of developing frontotemporal dementia. Three genes APP, PS1 and PS2 have been identified as causing early-onset Alzheimer’s.

Fact There is also a blood test for a gene called APOE-e4 which can identify people at higher risk of developing late onset Alzheimer’s.

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The gene apolipoprotein E (APOE) comes in three forms, APOOE-e4 is one of these three and is associated with the higher risk of Alzheimer’s.

Good to know Research already indicates that a blood test could become a very reliable way to diagnose dementia. A build-up of abnormal proteins in the brain is already known to cause several types of dementia, including Alzheimer’s disease (the proteins are called amyloid-beta and tau) and dementia with Lewy bodies (the proteins are called alpha-synuclein). Initial research has revealed that these proteins also occur within the blood platelets of people with dementia. Therefore a blood test that could identify the proteins could diagnose dementia.

Good to know British scientists have developed a blood test for Alzheimer’s which, in a trial of 1,148 elderly patients, was found to be 88 per cent accurate in predicting who would develop the disease. Further studies on a large group — up to 10,000 people — are ongoing.

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3. Brain Scans What brain scans will I receive during a dementia test? When diagnosing dementia, brain scans are mainly used to rule out other conditions that may have similar symptoms to dementia, such as brain tumours and head injuries. Brain scans are sometimes recommended as part of a dementia diagnosis, but not always.

Three types of brain scans Generally speaking brain scans (which are sometimes called brain imaging) don’t hurt, but they can involve lying still for quite a while.

1. CT scan Computerised tomography (CT) provides an image that is a detailed ‘slice’ of your brain. It can show if the brain has shrunk and can reveal evidence of strokes, mini strokes and tumours. It therefore can be an effective way to diagnosis vascular dementia because vascular dementia is often linked to strokes.

What actually happens? During a CT scan you lie on your side, on a table that slides into a small chamber while the machine scans your brain and takes images. It lasts around 20 minutes and is totally painless.

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2. MRI scan Magnetic resonance imaging (MRI) provides more detailed images of your brain and gives even more detail than a CT scan about strokes, blood vessel abnormalities and tumours. MRI scans can be an effective way to reveal the damage caused to the brain by Alzheimer’s.

What actually happens? During an MRI scan you lie on your side in a big tube-like machine that makes loud banging noises when it takes an image. An MRI scan is painless, however it can take an hour or more to complete. Knowing what to expect (especially that the noisy machine sound is normal) can make the whole experience much easier to deal with.

3. SPECT scan Single photon emission computerised tomography or PET scan positron emission tomography are usually only used if the CT scan or MRI scan fail to reveal anything conclusive and are usually requested by a specialist. They both produce images that show how the organs actually work, revealing which areas of your brain are more or less active than others, and therefore which — if any — areas of the brain are being affected by dementia.

What actually happens? During a SPECT or PET scan you lie on a bed that moves into a doughnut shaped x-ray machine and produces 3D images of the brain. It takes around 30–40 minutes.

Here’s the science A CT scan shows structural changes to brain tissue, while an MRI scan can show changes in the brain’s activity.

Did you know? A new brain scanning technique to rule out Alzheimer’s is now available on the NHS. It involves giving the person a tiny amount of a radioactive chemical called Amyvid before scanning them. The chemical then shows up the plaques of Alzheimer’s on the brain scan. However you will only be offered this sort of scan if your diagnosis of dementia is complex or unclear.

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Brain Scans: Your rights Brain scans are not considered an essential part of a dementia diagnosis, so you aren’t automatically entitled to receive one on the NHS. Dementia Guidelines by NICE (National Institute of Clinical Excellence) state that brain scans ‘may not always be needed in those presenting with moderate to severe dementia, if the diagnosis is already clear.’ The guidelines also say that if you want a brain scan your GP must provide ‘detailed clinical information’ suggesting why it is necessary. In other words, those who are elderly, frail or already showing obvious signs of dementia probably won’t be offered a brain scan. But those who are young, or have symptoms which could also indicate other brain diseases such as tumours and cancers, should be referred to hospital for a scan, though the waiting times can vary from days to several weeks, depending on where you live.

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Can the progression of dementia be monitored? Dementia is a ‘progressive’ condition which means it usually does get worse over time. This often happens slowly however — over years, not months — but it does vary widely from person to person and can also depend on the type of dementia.

Four ways to check how you’re doing 1. Follow up appointments If your GP has prescribed any drug treatments for dementia, you should receive your first follow-up appointment within about three weeks (before the second prescription is due) to make sure you can tolerate the drugs and to monitor any possible side effects.

2. Memory tests Around three to six months after diagnosis you should be offered another appointment with your GP, practice nurse, at your local memory clinic or by the consultant who diagnosed you, which might include another memory test. Memory tests can be a useful way to find out whether your dementia symptoms have progressed or stayed the same. For example, if your memory is getting worse it should show up fairly easily in the test and could mean that you’re given more help and support to continue living well. Further follow-up appointments are usually carried out every 6–12 months and can involve a memory test, but not if the person finds them upsetting or intimidating.

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3. CT scans If you were referred to hospital for a CT scan during your dementia diagnosis, you are usually offered follow-up scans every two or three years which should be able to reveal any further physical changes inside your brain. For example, if you have been diagnosed with Alzheimer’s, the CT scan might show further loss of brain cells in the area of the brain known as the temporal lobe. If you have been diagnosed with dementia with Lewy bodies or vascular dementia, any further brain cell loss will be more general and widespread. By comparing your most recent CT scan with the previous one, your doctor should be able to see quite clearly how far — if at all — your dementia has progressed. He might then be able to suggest more effective treatments and ways to manage it.

4. MRI scans These show a clearer, more detailed picture of the brain than a CT scan and are powerful enough to reveal even the smallest changes to ‘grey matter’ inside the brain (where information is processed) and ‘white matter’ inside the brain (where information is moved along). If your most recent MRI scan shows further damage to these areas, it’s a fairly strong indication that your dementia has progressed. For example, if you have vascular dementia, the doctor will be looking very carefully for any further change in the brain’s white matter, since this is where the most noticeable signs of the disease occur.

Don’t Panic If further tests reveal that your dementia has got worse, try not to worry. Our understanding of dementia is growing all the time and research is happening now. It’s quite possible your doctor, nurse or other professionals involved in your care will be able to offer you treatments (for some of your symptoms), advice, and ways to cope which will keep you independent for as long as possible.

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Chapter 6: Drugs and Dementia Drug treatments are an important way to help someone with dementia live well. There are several different medications that can be used to treat Alzheimer’s and other forms of dementia. The drugs available don’t yet offer a cure but in many cases they can help to slow the progression of the disease down. The Main Drug Treatments for Dementia These are designed to ease symptoms such as memory loss, behavioural and psychological problems, hallucinations and insomnia. But they don’t work for everyone, and should be regarded as one of many ways to help manage dementia alongside other therapies and lifestyle changes.

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1.

Drugs for Alzheimer’s

The three drugs commonly used to slow down the progression of Alzheimer’s are called Donepezil (although you might know it by its original brand name Aricept), Rivastigimine (Exelon) and Galantamine (Reminyl). As a group, these drugs are called Acetylcholinesterase inhibitors. These are usually prescribed for mild to moderate Alzheimer’s and can help to improve memory and concentration. Side effects may include nausea and vomiting but this should settle down within a couple of weeks. Another drug which may be prescribed is Memantine (you might know it as Exiba). This is prescribed for people in the moderate to late stages of Alzheimer’s disease and can help to alleviate distressing symptoms such as delusions and disorientation. Side effects may include dizziness, tiredness, headaches and constipation.

How to get them All the drugs above have to be prescribed by a doctor or consultant after a detailed medical assessment. The Alzheimer’s drugs are usually only given for between 6–12 months as research suggests their effect seems to wear off after that. Since Donepezil (Aricept) is the least expensive to prescribe, you may be offered that first.

Did you know? The Alzheimer’s drugs have been shown to help around 40–70 per cent of people with the disease.

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Did you know? A drug called Liraglutide, currently used to treat type 2 diabetes, may also have the potential to relieve symptoms of Alzheimer's. Research is still ongoing.

2. Drugs for other forms of dementia The Alzheimer’s drugs above can sometimes be prescribed for other forms of dementia. Here’s a rough guide to the sort of medication you might be offered if you have a different type of dementia.

Vascular dementia The Alzheimer’s drugs aren’t generally seen as being effective for vascular dementia, though some studies suggest they might help people in the early stages. So if you aren’t offered them, it’s worth asking why not. (You could ask for a second opinion if you still aren’t satisfied). Since vascular dementia is often linked to strokes, medications which help improve lifestyle (and reduce the risk of any further strokes) are usually recommended and can help to slow down the progression of vascular dementia. These include: • Drugs to lower blood pressure (called ACE inhibitors or beta-blockers) • Statins to lower cholesterol • Aspirin or anticoagulants such as warfarin to prevent blood clots and further strokes

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Dementia with Lewy bodies Studies show that people with dementia with Lewy bodies or mixed dementia (when Alzheimer’s is the main cause) can benefit from the Alzheimer’s drugs and may be offered them.

Frontotemporal dementia The Alzheimer’s drugs don’t, unfortunately, seem to help people with frontotemporal dementia, but antidepressants (see below) have been found to help ease some of the behaviour problems related to it.

3. Drugs to lift mood It’s quite common for people with dementia to have depression as well (which might make their memory worse) and anti-depressants can be effective, although evidence is still patchy. The most widely prescribed are called selective serotonin reuptake inhibitors (SSRIs), best known are fluoxetine (Prozac) citalopram (Cipramil) paroxetine (Seroxat) and sertraline (Lustral). Newer drugs called selective norepinephrine reuptake inhibitors (SSNRs) can also be effective and include drugs such as venlafaxine (Effexor). However, all of these drugs take several weeks (around 4–6 weeks normally) to work. Side effects are usually mild, but may include nausea, a dry mouth, insomnia and agitation. Bear in mind that older antidepressants (including tricyclic antidepressants) can worsen memory problems in people with dementia.

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4. Drugs to help sleep If the person you're caring for seems permanently exhausted due to disrupted sleep, they may be prescribed sleeping pills. Although studies have shown that older style benzodiazepine sleeping pills may increase the risk of developing dementia, the newer drugs, known as 'Z drugs' (such as zolpiderm or zopiclone) aren't thought to carry the same risk. These are commonly prescribed and shouldn't cause drowsiness or other unpleasant side effects. Consult your doctor before taking regular, high doses of hay fever medication or over-thecounter sleep remedies containing antihistamines. Recent US research suggests these drugs may also slightly increase your risk of developing dementia.

5. Anti-psychotic drugs These are the same drugs used to treat people with mental health conditions such as schizophrenia. Research suggests that they should be used cautiously. Anti-psychotic drugs can help control some of the most challenging symptoms of dementia such as aggression, hallucinations and delusions, by acting as a sedative. • Only one anti-psychotic drug — risperidone — is licensed to treat dementia symptoms in the UK. • However doctors can prescribe other anti-psychotic drugs ‘off licence’ if they wish, which means they can still prescribe them for the treatment of dementia if they feel it is necessary. Other commonly used anti-psychotics include haloperidol, aripiprazole, and olanzapine. • Anti-psychotics are usually given as a tablet or liquid, but can also be injected into muscles for a longer lasting effect. • Recent research suggests that people with Lewy Body Dementia should not be prescribed anti-psychotic medication because it can cause potentially dangerous side effects for those with this condition.

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Here’s the science Anti-psychotics calm brain activity by dampening down dopamine, a chemical in the brain. Too much dopamine in the brain can lead to hallucinations, delusions and confused thinking. The drugs were first developed in the 1950s, these are called ‘first generation’ anti-psychotics and haloperidol is one of them. The newer ones are called second generation or ‘atypical’ anti-psychotics — risperidone is one of these. What the Government says NICE guidelines on the use of anti-psychotic drugs in dementia recommend that they should only be used in the first instance if a person is severely distressed, or there is an ‘immediate risk of harm’ to them or other people. Generally speaking, the guidelines recommend that antipsychotics should only be prescribed for people with dementia when all ‘alternative measures’ have failed.

The pros and cons of anti-psychotic drugs: Pros •

Drug trials have shown that for people with Alzheimer’s disease, anti-psychotic drugs can have a small but significant beneficial effect on aggressive behaviour when prescribed for a short period of time — around 6–12 weeks.

Anti-psychotics can have a calming effect and be an important part of treatment for someone with dementia who is extremely distressed and in danger of hurting themselves or the people around them, such as family or carers.

Cons •

Anti-psychotic drugs were over subscribed for many years. Even now they only help around 50 per cent of the people with dementia who take them.

Anti-psychotics can have serious side effects, particularly if they’re taken for longer than 12 weeks. For example, they can increase the risk of a stroke by up to nine times, and lead to excessive sleepiness and unsteadiness, which can, in turn, cause falls and injuries. In fact, a Department of Health review found that anti-psychotic drugs contribute to around 1,800 deaths per year.

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BUT •

The UK prescription rate for anti-psychotic drugs has fallen by 52 per cent since 2008.

Better understanding of the reasons why people with dementia can become angry or aggressive, could account for this, and mean that the prescription rate will drop even further.

Anti-psychotics and nursing homes Research shows that care home residents are more likely to be offered anti-psychotic drugs than people with dementia who live in the community. A 2013 study by Queen’s University Belfast found that around 20 per cent of elderly people in care homes are given antipsychotic drugs, compared to one per cent of people the same age still living in the community. A major study, published in 2016, found that anti psychotics were still oversubscribed in UK care homes, despite the Government strategy to curb their use. But this could be because people in nursing homes are often in the later stages of dementia when hallucinations and aggressive behaviour can be more pronounced. For example, if they are suffering from a frightening hallucination and in danger of hurting themselves — or someone else — an anti-psychotic could provide them with some much needed relief.

Don’t Panic There may have been a good reason for an anti-psychotic being prescribed. The vast majority of nursing professionals don’t want to administer drugs unnecessarily to their patients, particularly drugs which have a sedative effect.

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Join the search for new dementia drugs and treatments The only way to beat dementia is by doing research. Lots of it. Fortunately, the UK government has recognised this fact and is investing money into clinical trials to find out more about the disease and better ways to treat it. But money isn’t enough. For the research to be thorough and effective, volunteers are needed to take part in it — the more the better. • Every 3.2 minutes someone develops dementia in the UK • Around 850,000 people in the UK have dementia • More than 30,000 volunteers have now registered to take part in research • But for research to progress, more people are needed

What actually happens? There are hundreds of research projects taking place all the time. The easiest way to get involved is to join an organisation called Join Dementia Research (see below). You’ll be asked to fill in a simple form online to register your interest and then you’ll be placed on a register of volunteers which is used by researchers nationwide when they want to recruit people for studies. You don’t have to do anything else. If your condition or experience is a good ‘match’ for a particular study, a researcher will contact you and tell you more about it. You don’t have to say ‘yes’ straight away and if you want to drop out at any time, that’s fine too.

Good to know You can sign up on behalf of someone else, providing they have given their consent or you have a Power of Attorney that allows for this. Although research is mainly aimed at people with dementia and their carers, healthy volunteers over 18 are also needed.

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Four reasons to join a clinical trial 1. The vast majority of people who take part in dementia research — whoever they are —seem to find it a rewarding experience. 2. Even if it doesn’t make much difference to you, many people still feel better for having taken part and for ‘doing their bit’ in the search for a cure, as there is currently no cure for most dementias. ‘I’ve got nothing to lose’ is the attitude most participants take. 3. It’s not all about drugs. You could find out more about your condition or ways to improve your symptoms. For example, some research focuses on nutrition, lifestyle or genetics. 4. If you are caring for someone with dementia, or dementia has affected your family, your contribution could be valuable too. Some studies focus on genetics or on finding more ways to help carers and loved ones to cope.

How to get involved •

Join the register

Visit joindementiaresearch.nihr.ac.uk •

Join a trial directly

This is a bit more complicated but it might be useful if you are interested in being considered for a trial into a particular drug that you’ve heard about. Go to http://www.nhs.uk/Conditions/ Alzheimers-disease/Pages/clinical-trial.aspx Look for trials in the UK that are recruiting now and follow the links.

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Chapter 7: Therapies for Dementia Drugs aren’t the only way to treat the symptoms of dementia. Here’s several other therapies and approaches to dementia care that are worth knowing about. Natural therapies Many people with dementia find natural therapies beneficial and enjoyable. Whether it's a herbal remedy to boost mood or memory, a massage to ease anxiety or agitation, or acupuncture to reduce tension and aid sleep, natural therapies can be a useful way to manage symptoms of dementia, but they don't — as yet — offer a way to cure or prevent it.

Fact There is a shortage of evidence to support most natural therapies and their effects. Study results have been contradictory, some support their benefits whilst others discredit them. But these studies are mostly very small, and much more are needed to provide clarity in this area.

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Acupuncture What is it? Acupuncture is a treatment from ancient Chinese medicine in which fine needles are inserted into various parts of the body, but don’t worry — it’s not painful.

How does it work? The needles stimulate nerves under the skin and in muscle tissue resulting in the body producing pain relieving substances such as endorphins.

The evidence: There is scientific evidence that acupuncture can help manage pain — particularly back pain and arthritis. Acupuncture has also been shown, in small studies, to have a positive effect on people with dementia, helping to improve memory and cognition, bringing ‘significant therapeutic effects’ by reducing anxiety and lifting mood.

You decide: This may be worth a try if you are struggling with anxiety and low mood, and aren’t put off by the needles, though you’ll probably have to pay privately, since acupuncture is only available on the NHS for pain management, and even then it’s hard to get. Prices start at around £35.

Aromatherapy What is it? The use of plant based oils (either inhaled or applied to the skin). Aromatherapy is becoming increasingly accepted as a way to treat some of the symptoms of dementia.

How does it work? The oils stimulate the part of the brain connected to smell — the olfactory system. A signal is sent to the limbic system of the brain, which controls emotions and retrieves memories. This causes chemicals to be released which make the person feel relaxed, calm or stimulated.

The evidence: Some studies have shown that aromatherapy can have significant benefits including a reduction in agitation, sleeplessness, wandering and depression. Lemon balm is the most studied oil and considered one of the most effective.

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You decide: You may wish to give it a go if the person you’re caring for is mildly or moderately effected by dementia, but note that as the illness progresses some people lose their sense of smell. As aromatherapy is fairly easy to do at home and inexpensive (pure essential oils start from around £6 per bottle), even if there are no symptomatic changes your loved one’s environment will smell lovely!

Top oils to try: • Lavender, for insomnia, relaxation, anger and irritability. • Peppermint, to stimulate the mind and calm the nerves. • Rosemary, to stimulate the mind and body. • Bergamot to relieve agitation and anxiety • Lemon balm to improve memory. Remember: Always dilute essential oils in a carrier oil when applying to the skin and follow the manufacturer’s instructions.

Did you know? Aromatherapy is the fastest growing complementary therapy amongst nurses who use it on their patients.

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Massage What is it? Massage therapy can be used on someone with dementia to bring comfort, rest and relaxation through gentle touch.

How does it work? Massage releases the ‘feel-good hormones’, oxytocin and dopamine, which relieve pain and discomfort, help regulate sleep, improve circulation and aid mobility.

The evidence: There is a lack of clinical research into the benefits massage can give to people with dementia, but there is sufficient interest in its potential benefits for government guidelines to recommend that massage be made available, as part of a care package, where possible.

You decide: A massage may be a lovely treat for anyone but if you are considering it, make sure it’s carried out by someone who has training and experience in working with clients who are living with dementia. Expect to pay anything from £20.

Bright Light Therapy What is it? The person receiving bright light therapy sits under a light box for a set amount of time, around 30 minutes per day.

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How does it work? The light box provides around 30 times more light than an average office light. The additional light encourages your brain to alter levels of melatonin (the hormone that makes you sleepy) and serotonin (the hormone that affects our mood).

The evidence: Several studies have shown that bright light therapy can help people with dementia to sleep better and longer, and be less inclined to be restless through the night. One study has shown it might also improve memory and cognitive ability.

You decide: If disrupted sleep is a particular concern, it could be worth investing in a lightbox.

Kampo therapy What is it? The use of traditional kampo medicine, which is a Japanese variant of Chinese herbs.

How does it work? Two remedies are used for treating dementia. They are called Chato-san, which contains 11 medicinal plants, and Kami-Umtan-To (KUT) which contains 13 medicinal plants.

The evidence: Two studies suggest that Chato-san might be effective in treating vascular dementia and one clinical trial found that Kami-Umtan-To might help to slow down the progression of Alzheimer’s.

You decide: More research is needed but if you want to try these remedies make sure you tell your GP and buy them from a well-known, reputable company or a professionally trained herbalist.

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Doll therapy Doll therapy is the use of dolls or soft toys to provide comfort and stimulation for someone with dementia. It’s thought that cuddling and playing with dolls can help ease anxiety, aggression and give meaning and purpose for someone with dementia. However, doll therapy is not without its critics. The main argument against it is that it’s demeaning to a person with dementia. ‘Playing’ with a doll is something children do, not adults. Sometimes the greatest obstacle to doll therapy is family embarrassment (it can be difficult to watch a parent or spouse acting in a child-like manner) and has little to do with how much enjoyment it might bring a person with dementia. In fact, doll therapy can be very beneficial when used in the correct way, and in reality, it isn’t really ‘playing’, but rather fulfilling an important need; the need to nurture. There have been examples of dementia patients who were already non-verbal, but still able to get great comfort from caring for a doll, wrapping a shawl around it, cuddling, patting and kissing it. In many cases, the person is merely regressing back to a time when they were a parent caring for their own young children, so if it brings them joy and comfort, why not?

However, there are a couple of things to consider before you try doll therapy. 1. Doll therapy is a great activity for people in the mid stages of dementia, but you can start it earlier than this, if your loved one is accepting of it. 2. Don’t hand a doll directly to the person you’re caring for, just leave it where they can see it and if they want to pick it up, they can. This may seem a trivial point but it isn’t. If your loved one feels as if the doll has been ‘forced’ upon them, it can make them feel very stressed – which totally defeats the object. 3. Try to get a doll which is as life-like as possible. Baby dolls that you can feed and change are easily available now, you can even get some with weighed bottoms which make patting and cuddling easier. 4. Doll therapy doesn’t just refer to dolls. Teddy bears and soft animals can have similar effects as dolls, as they’ll remind the person with dementia of looking after a pet. Tip: Don’t buy the sort of doll that cries or plays music – these can be very aggravating for someone with dementia. Finally, remember that doll therapy isn’t only for women – men like to cuddle, too. If your loved one seems agitated and unable to relax, this type of therapy might be worth considering, whether they’re male or female.

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Reminiscence therapy Reminiscence therapy is an effective and enjoyable way to connect with a person who has dementia and to help manage some of the more distressing symptoms of the illness. While your loved one might not be able to remember what they had for lunch, they are very likely to remember their wedding day, the name of a favourite school teacher, or a childhood holiday. Reminiscence therapy uses this ability to recall events that happened long ago, even when short term memory is failing, to increase the self-worth and engagement of someone with dementia. It can also help to boost their mood and stimulate wider conversation. Anecdotal evidence suggests that stimulating long-term memory can also improve short-term memory.

How reminiscence therapy works As we age, we have an increased tendency to remember things that happened to us between the ages of 10 and 30 years, with events from the late teens and early twenties remaining most prominent. Psychologists call this ‘the reminiscence bump.’ For people with dementia, ‘reminiscence bump’ memories usually remain vivid (until their illness is very advanced), and can often be recalled quite easily with the use of some simple triggers.

What actually happens? The carer, relative, friend or professional reminiscence therapist will start by showing the people they’re working with some key multi-sensory items designed to trigger memories. For example, a photograph of the Queen’s coronation, a 1950s kettle, or an old-fashioned egg whisk. She might also play a popular song from the 1940s, or show clips from a film of the same era. The items are then used to stimulate conversation and remind the person with dementia of their identity. If they’re in a nursing home, or have domestic professional carers, it’s also a great way for the staff to get to know them better, and gain an understanding of the richness and complexity of their lives before they had dementia.

Why it works Reminiscence therapy allows someone with dementia to enjoy a good conversation and the benefits it brings, although it’s probably less beneficial to people with frontotemporal dementia or those in the later stages of dementia. Recalling positive memories makes everyone feel happy, and if you have dementia and are battling depression, good memories can become a powerful way to boost your mood. Reminiscence therapy can turn a ‘bad’ day into a ‘good’ day — or even a good week. Many people say their loved one seems brighter and more able to recall recent events from the past few days or weeks after a session of reminiscence therapy.

Can anyone do it? Yes. Reminiscence therapy is often carried out in care homes, either in groups or in one-to-one sessions but you can also do it at home with a loved one. Training can help make the session more effective, but it isn’t by any means essential.

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Do it yourself •

Create a memory box (decorate it with old wallpaper from their house, or fabric from a favourite dress or curtains). If they have a favourite old handbag, use that.

Fill it with items that mean a lot. For example, a baby’s bib, a photograph, nuts and bolts. They can rummage in it whenever they want, but also make sure you spend some time with them talking about the items and what they mean.

If you’re struggling to find things, work out which years their ‘reminiscence bump’ happened and do some research. For example, if the 1940s were key years for them, what events might they remember? What clothes might they have worn? What would their kitchen have looked like? Create a scrapbook of images from the time, and visit junk shops or vintage shops for item inspiration.

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What if they can’t remember? In the later stages of the dementia journey reminiscence can become more difficult. Trying to get people with more severe memory loss to recall facts about their lives may make them feel uncomfortable and even upset. But it’s still possible to use reminiscence therapy by stimulating the senses. Here’s how:

1. Smell: Try spraying their favourite perfume around the room or on their clothes. You could also find specific scented products that will help trigger memories from their past. 2. Touch: Try giving them a soft toy to stroke and cuddle or spend time playing with sand or play-dough together — it could trigger lovely memories of childhood. 3. Taste: Try offering a favourite food or drink they used to enjoy. For example, dandelion and burdock cordial, marshmallows, or an old-fashioned rice pudding could bring lots of pleasure. 4. Sound: Compile a CD of their favourite music or buy one linked to their favourite decade. 5. Sight: Try looking at a special reminiscence picture book together as it could trigger memories of seaside holidays or favourite pets and bring lots of pleasure.

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Good to know Reminiscence therapy is steadily growing in recognition as a way to help people with dementia. Some care homes and hospitals have even taken it a step further by creating a 1950s living room or an old-fashioned sweet shop on their site — with great results. Cognitive Stimulation Therapy Cognitive Stimulation Therapy (CST) is a programme of themed activities, usually carried out over several weeks in small groups, led by a trained nurse, an occupational therapist or a carer. Each session covers a different topic and is designed to improve the mental abilities and memory of someone with dementia. Evidence so far suggests that Cognitive Stimulation Therapy could be just as beneficial as drug treatments for the symptoms of dementia. • Cognitive Stimulation Therapy is the only non-drug treatment recommended by the National Institute for Clinical Excellence (NICE). • The programme is usually carried out over 14 sessions, each lasting around 45 minutes and containing structured discussions and group activities. Groups are deliberately small, often consisting of only five to eight people. • Cognitive Stimulation Therapy is often carried out in nursing homes, memory clinics or day centres. However, it is possible to do sessions in your own home.

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What actually happens? Each session follows the same structure, though the theme changes. Topics might include childhood, food, current affairs and using money. Different activities will be offered around each theme, for example, one week the activities might involve word puzzles or games, another week playing a musical instrument. The group should provide a supportive atmosphere and the activities should offer a range of multi-sensory experiences...and be fun.

What’s the evidence it works? A trial in 23 care homes and day centres showed that CST led to ‘significant benefits’ in mental ability and memory, similar to the benefits of taking medication for symptoms of memory loss. Further research revealed that CST could also make a significant impact on language skills such as naming, word-finding and comprehension, and an increase in confidence and psychological well-being.

What happens next? Once the 14-week programme ends, a longer term ‘Maintenance CST’ programme is recommended, consisting of 26 weekly sessions. Trials suggest that people who participate in the maintenance programme are still feeling the benefits up to six months afterwards. Tip: Since it’s endorsed by the Government, many NHS Trusts routinely offer CST, but not all of them. So ask your GP, community nurse, or any other health care professional involved in your treatment plan, if CST is available in your area.

Good to know Cognitive Stimulation Therapy can also be carried out one-to-one or at home but you need to learn how to do it. To find out how it’s done you could consider taking part in a research programme which might teach you the vital skills needed. Visit http://www.cstdementia.com for more information including details of the next training sessions for CST.

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The Person Centred Approach (PCA) It’s really important that people living with dementia receive care which puts their needs and desires first. This is called a ‘person centred approach’. While not strictly a ‘therapy’, it can be a useful concept that you can apply not only to other popular dementia therapies, but to care in general. When someone has dementia it’s easy to just see the illness and forget about the person they used to be. The person centred approach to dementia was developed to stop this happening and to ensure that the person living with dementia remains the focus — not the illness — and that they are always treated with respect, and as unique individuals. The premise, ‘nothing about me, without me,’ is at the heart of the person centred approach. • The person centred approach was developed in the UK by Professor Thomas Kitwood, a pioneer in the field of dementia care in the 1980s and has since received worldwide recognition and praise. • Person centred care has been shown in studies to reduce agitation and aggression in people with dementia. • Another study of person centred care showed it significantly reduced the number of people with dementia needing hospital treatment or anti-psychotic medication — both of which can be the result of aggressive behaviour.

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Three ways to make it work If you’re caring for someone with dementia you can ensure your care is more ‘person centred’ by: 1. Giving a choice of food at mealtimes. Either ask what they’d like, or show pictures to help. Failing that, whenever possible, give them something they’ve always enjoyed, and would choose to make themselves. 2. Little things mean a lot — too much choice may be overwhelming but some is essential. For example, choosing which necklace, lipstick, watch or tie to wear, might seem insignificant, but it can make someone with dementia feel more in control of their own life. 3. Ask yourself: Am I seeing the world through their eyes? If the answer is yes (or as much as you can) you’re using a person centred approach.

Don’t worry Many people who care for loved ones with dementia use the person centred approach instinctively, without even realising it, and with good results. Person centred care can make someone with dementia feel calmer and happier — which should make your life a little easier, too. But it’s important not to berate yourself if you can’t always do things the way they’d prefer. Doing your best is what counts.

Your person centred checklist If your loved one is in a nursing home you might want to check that they’re receiving the person centred care they have a right to. Here’s what to look out for: • Are they being treated with dignity and respect? • Do staff know their likes and dislikes, their favourite music, hobbies or when they like to take a bath? • Is their opinion and personality understood and taken into account? • Do they seem valued as a human being, regardless of their age or how advanced their illness is?

Good to know The person centred approach now underpins the vast majority of care for people with dementia. Most good nursing homes will already be implementing it, and be very happy to discuss how they do this with you. 70


Chapter 8: The Big Questions Now you have all the essential information about dementia at your fingertips, here’s a couple of questions you’re probably itching to ask…and we’ve answered them as honestly as possible. Question 1: What is the life expectancy for someone with dementia? It’s sad but true that people with dementia usually have shorter lives. However, exactly how much shorter their life will be varies enormously from person to person. Here’s the key information about life expectancy, but remember, these are only general statistics. Life expectancy is one of the key issues that someone diagnosed with dementia, or their friends and family, want to understand, but there is no simple answer. Dementia is often called a ‘life-limiting’ condition although people have been known to live with it for as long as 26 years after they first start showing symptoms. Generally speaking, the life expectancy of a person with dementia depends on the type of dementia they are diagnosed with, their age and health. Most studies seem to show that the average number of years someone will live with dementia after being diagnosed is around ten years. It’s important not to take this number — or any other — as fact, but to use it as guidance, and as a way to make every day count.

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Five facts about the future Studies into the main types of dementia have revealed the following about life expectancy.

1. Alzheimer’s disease General life expectancy for someone with Alzheimer’s is around 8–12 years from diagnosis although this does depend on age and health. If you were relatively fit and healthy on diagnosis you could live considerably longer than this. People who are diagnosed around the age of 60–65 tend to decline more slowly than those who are aged 80 or over. But with the right care and treatment, a fit and healthy 80 year old could still live into their nineties.

Good to know A US study of 1,300 men and women with Alzheimer’s showed life expectancy to range from one year to 26 years from when their symptoms first appeared.

2. Vascular dementia Since vascular dementia is often linked to strokes, people who are living with it can be in poorer general health than those with other types of dementia. Studies have shown their average life expectancy to be around four years after diagnosis, though their eventual decline is often linked to further strokes.

3. Dementia with Lewy bodies After diagnosis, the average lifespan of someone with dementia with Lewy bodies was found in one study to be around 5–7 years after onset. However people have been known to live between 2 and 20 years with it, depending on their age, and other medical conditions they may have, such as Parkinson’s disease which can be related to dementia with Lewy bodies.

4. Frontotemporal dementia The average life span for someone with frontotemporal dementia is around 8 years from when their symptoms first started, but once again, this can vary dramatically from person to person. Many people have lived for more than 10 years with this type of dementia.

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5. Young-onset dementia Almost everyone who develops one of the main forms of dementia will live longer if they are generally in good health or are relatively young when diagnosed, that is, in their midsixties rather than mid-eighties. However this is sadly not always the case when someone is diagnosed with young-onset dementia. For reasons that are still being scientifically investigated, young-onset dementia seems to progress more quickly. For example, a person who is diagnosed with frontotemporal dementia between the ages of 30–50 could live, on average, around two years less than someone diagnosed in their sixties or seventies. However, this may be because younger people are often diagnosed when their condition is more advanced so the disease seems to progress more quickly than it actually does.

Good to know Survival rates for all dementias are increasing all the time. One of the main reasons for this is that more people are being diagnosed earlier and receiving better care. So it’s quite possible that you — or the person you’re caring for — could live longer than any of these general estimates might suggest. How to get a better idea of life expectancy for your individual situation. While every person is different, and every dementia journey is different, if you want more clarity about how long you, or your loved one might live, studies suggest that the main factors to consider are: 1. Age (very elderly people tend to have a shorter life expectancy). 2. General health when diagnosed (i.e., if they are otherwise in good health or are also coping with other medical conditions). 3. Which form of dementia they have (as you can see, some progress more rapidly than others). 4. How much they can still do for themselves day to day. Experts call this ‘functional ability,’ and it seems to matter more than ‘cognitive ability’. In other words, people who continue to try doing things for themselves, even if their dementia is quite advanced, tend to live longer than those who stop. *Other factors, such as whether you are married, living at home or your level of education don’t seem to have an impact.

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Question 2: How far off is a cure for dementia? Dementia is a complex set of symptoms with many possible causes, but what many people want to know is can dementia be cured? Finding a cure is never going to be easy, but recent developments and understanding of how the disease progresses have been encouraging. Researchers now believe an effective treatment — if not a complete cure — could be available within 10 years.

Reasons to hope •

In the 1970s a war was declared on cancer which has had significant effects in developing new and powerful treatments. A similar ‘war’ was declared on dementia at the 2013 G8 Summit when dementia was finally recognised as one of the most serious health challenges of the 21st century.

More money than ever before is being poured into research. The UK government has pledged to double its annual research funding to £132m by 2025.

In November 2017 Bill Gates gave $50m to the UK based Dementia Discovery Fund, which invests in innovative dementia research. Gates said he felt 'optimistic' about the chance that a treatment might be discovered soon.

World experts are coming together to pool funds and resources and share information. As a result, scientists now have a better understanding of the mechanisms involved in the diseases that cause dementia than ever before.

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The future looks bright Here’s what worldwide dementia experts have said: ‘In my generation the aspiration is that by 2020 or 2025 we will find a treatment for dementia or at least the commonest cause of dementia which is Alzheimer’s disease. The future is bright, and there is a lot to be enthusiastic about, but we aren’t quite there yet.’ Professor Alistair Burns, NHS director for dementia.

'There's a lot of reason for hope. There are over 130 different clinical trials going on now. I remember the days when there were none. I think in 10 years it's very likely we'll have achieved that goal of having effective therapies in multiple categories that will have enough effect on the disease process that we'll be able to delay the disease process beyond the average life expectancy. Howard Fillit, executive director, The Alzheimer’s Drug Discovery Foundation ‘We now understand much more about the progression of Alzheimer’s disease and researchers are finding ways to identify people in the earliest stages where they have the best chance of developing treatments that work.’ James Pickett, head of research at the Alzheimer’s Society UK.

‘This research is extremely exciting and it would not be unrealistic to say that we might see a treatment within five years.’ Harry Cayton, chief executive of the Alzheimer’s Association US.

‘Many researchers believe successful treatment will eventually involve a ‘cocktail’ of medications aimed at several targets, similar to current state-of-the-art treatments for many cancers and AIDS,” Heather Snyder, director of medical and scientific operations at the US Alzheimer’s Association.

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Chapter 9: Famous Faces of Dementia You’ve heard a lot about the diseases they discovered or the drugs they created. Find out more about the scientists behind the biggest dementia breakthroughs Who: Alois Alzheimer Alois Alzheimer was a German psychiatrist and neurologist, born in 1864, who started working in a state asylum and then became interested in brain research and diseases of the brain. In 1901 he met a female patient who was to change his life. Her name was Auguste Deter, she came to him, aged 51, suffering from short term memory loss and saying ‘I have lost myself.’ Her condition worsened into severe dementia and she died aged 55.

His big discovery During an autopsy, Alzheimer examined Auguste Deter’s brain under a microscope and described the ‘plaques’ he saw in the usually empty spaces between nerve cells and ‘tangles’ of string-like substances. The following year, in 1907, he delivered a lecture about his former patient in which he said she had suffered ‘an unusual disease of the cerebral cortex.’ The lecture was to make him famous and the plaques and tangles he described became known as Alzheimer’s disease. • Alzheimer’s called the condition he discovered pre-senile dementia. It was his boss Emil Kraepelin who coined the phrase ‘Alzheimer’s disease.’ • However, Alzheimer believed that the disease he discovered was rare and generally only affected people under the age of 65. • Alzheimer’s work also contributed to our understanding of other diseases such as vascular dementia, Huntington’s disease, brain tumours and epilepsy.

Did you know? Alzheimer’s smoked cigars all day as he worked with students in the laboratory. At the end of each day there would be a cigar stump at nearly every student’s workstation. Alois Alzheimer died, aged only 51, from heart failure.

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Who: Professor Arnold Pick Arnold Pick was a German-Jewish neurologist who studied medicine in Vienna and worked at the University of Prague and in a psychiatric hospital.

His big discovery In 1892 he described a form of dementia which included progressive loss of speech and was previously unheard of. Pick discovered that the frontal and temporal lobes were most affected by this type of dementia and that they contained unusual protein deposits which became known as ‘Pick bodies.’ Pick’s Disease, also called frontotemporal dementia, is now recognised as a rare form of dementia accounting for around 5 per cent of all dementia types.

Did you know? Pick’s ability to record the history of a psychotic or mute patient was legendary. His secretary was a manic depressive and an inmate of the asylum where he worked.

Who: Frederic H Lewy Dr Frederic Lewy was a young German scientist who worked in the University of Munich’s department of psychiatry.

His big discovery In 1912 he was working in Alois Alzheimer’s laboratory when he described several unique abnormalities in the brain cells of people with Parkinson’s disease. These abnormal structures (microscopic protein deposits found in deteriorating nerve cells) became known as ‘Lewy bodies’ in his honour. They are now seen as characteristic indicators of Parkinson’s disease and dementia with Lewy bodies.

Did you know? Lewy was Jewish and fled from Nazi Germany in 1934 to the USA. He became a US citizen, changed his name to Lewey and served in the US army against Germany in World War II.

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Who: Sergei Korsakoff A Russian psychiatrist born in 1887, who studied in Vienna and is often considered ‘one of the greatest psychiatrists of the 19th century.’

His big discovery Korsakoff studied the effects of alcoholism in great detail and took particular interest in its connection with memory loss. In medical papers he described ‘the disturbances of memory in long term alcohol abuse’ which later became known as Korsakoff Syndrome.

Who: Robert Katzman An American neurologist and researcher who was also a founder of the Alzheimer’s Disease Research Centre in the US.

His big discovery Katzman persuaded the medical community to change its view of Alzheimer’s which, until then, was still considered a rare disease which only affected people under the age of 65. In the 1970’s Katzman’s research revealed that Alzheimer’s was, in fact, a ‘major killer’ which was also prevalent in older people and should be considered a major public health issue. His work went on to change attitudes and raise awareness, and led to a massive increase in funding for research into the disease.

Did you know? After his death in 2008 colleagues noted that Katzman’s key goal was ‘that everyone must hear of Alzheimer’s disease, understand and defeat it.’

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Who: Thomas Kitwood A British psychologist and pioneer in the field of dementia care.

His big discovery Kitwood was responsible for developing a ‘person-centred’ approach to dementia care in the 1990’s which is now implemented worldwide and has played a major part in improving the care of people with dementia both in the community and in care homes. Putting the person before the disease is at the heart of Kitwood’s approach which is described in detail in his awardwinning book Dementia Reconsidered: the person comes first (1997). The philosophy to ‘treat others in a way you yourself would like to be treated’ underpinned everything Kitwood believed in and earnt him international respect and recognition. He died in 1998 aged 61.

Did you know? Kitwood originally trained for the priesthood and was ordained in 1962 but later married and renounced any particular religious attachment.

Who: Dr Hachiro Sugimoto A Japanese chemist and pharmacologist. Born the eighth of nine children in a poor part of Tokyo, he worked his way up to the top of a major pharmaceutical company and became passionate about finding drug treatments for dementia when his mother was diagnosed with the condition.

His big discovery In 1983 Sugimoto began research on a drug known then as E2020. Shortly after this his mother passed away. The drug was finally made available in the UK in 1997 under the name Donepezil (Aricept) and although it doesn’t offer a cure for Alzheimer’s it remains one of the only drugs which can ease symptoms and sometimes slow down its progression.

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At Unforgettable we bring together life-changing products, services and advice to help people with dementia do the things we take for granted. Founded by James Ashwell after caring for his mother, we work with inventors, researchers, care homes, therapists and carers to find innovative solutions for you. It’s our aim as a B Corp to create positive social impact by using business as a force for good. This is why we created the Unforgettable Foundation and why we work in partnership with leading dementia charities in the UK and internationally. Visit www.unforgettable.org/charity-partners We would love to hear from you so please do get in touch at happytohelp@unforgettable.org or on the phone 020 3322 9070.

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Tell us what you think We hope you found this book useful and that it makes a real difference. We set up Unforgettable to help people with dementia enjoy the best life possible. Help us be better! Give us your feedback on the things you read here. Things you found useful, that you particularly like or that you disagreed with.

Your ideas could help others! Please tell us your stories, tips and experiences. We are building a community of carers so that they can also learn from each other. Share with us any ways that you have coped with the symptoms and illnesses in this book, any ways that you have avoided hospital admissions or products you have found that really helped. We will share these with our community so that other can benefit from them.

Get in touch We are always happy to help, recommend products and to hear feedback and ideas, so please do get in touch: Web www.unforgettable.org Email happytohelp@unforgettable.org Phone 020 3322 9070 @Unforget_org unforgettable.org

Some products and services that might help The dementia journey is full of challenges which can feel overwhelming at times. If you’re struggling right now, Unforgettable might be able to help. We have a wide range of products and services designed to make your life a little bit easier; from dealing with legal matters to finding practical ways to cope with incontinence or disrupted sleep. The next few pages offer a glimpse of what Unforgettable can do for you. Remember, you aren’t alone. Best wishes,

The Unforgettable team


Dementia is the UK’s most feared illness – more than two thirds of people over 50 are scared of developing it. But fear can often be a result of ignorance. Dementia Explained separates the facts from the fiction and answers some of your most pressing concerns, including; •

Will I get dementia?

How long can you live with dementia?

When will there be a cure?

So whether you’re newly diagnosed, caring for a loved one or just want to know more about the condition which currently affects more than 850, 000 people in the UK, this is the book for you. Dementia Explained has been compiled by memory and dementia specialists Unforgettable.org. Other eBooks in the series coming soon!

A Guide to the Dementia Journey

A Carers Guide to Dementia

www.unforgettable.org 020 3322 9070, happytohelp@unforgettable.org Unforgettable.org, Runway East, 58-64 City Rd, London EC1Y 2AL

Your Dementia Home

Dementia Explained e-book  

A comprehensive guide to what dementia is and how it can affect you.

Dementia Explained e-book  

A comprehensive guide to what dementia is and how it can affect you.