What concerns you most about your future health?
Chances are it is not the condition of your heart or even the risk of cancer.
Today, the greatest fear for people is that they may end their days slipping into dementia.
The idea of losing control of one’s thoughts or being unable to remember loved ones causes understandable anxiety, and it happens to an increasing number of people.
According to the Alzheimer’s Society there are already more than 800,000 people with dementia in the UK and that number is set to double over the next 35 years.
Fears about becoming one of them has led to a surge of people turning up at dementia clinics.
Figures published by the Royal College of Physicians earlier this month show there’s been a four-fold rise in the number of patients seeking help at these specialist centres.
They’re anxious about their forgetfulness and unsure of what it means.
So how can you tell if you — or someone close to you — is just a bit forgetful or in the early stages of dementia? And what can you do to cut your risk of developing the disease in the first place?
Over the coming weeks, these questions and many more will be answered in this major Good Health series, helping you understand everything you need to know about this disease, its diagnosis and how best to treat it.
We’ll also look at other conditions, from depression to thyroid problems, that are often wrongly diagnosed as dementia.
And if you’re one of the legion of silent heroes caring for someone with dementia, we’ll also focus on how to cope with the challenges you face.
As dementia becomes increasingly common, we all need to know how to live well with this disease…we hope to help you find the way.
THERE ARE 200 TYPES OF DEMENTIA
Dementia is not a single disease, but is an umbrella term for a group of conditions that damage the brain.
In fact, there are more than 200 types of dementia. Alzheimer’s disease, which accounts for 60 to 70 per cent of cases, is the most common form.
One of the main features of Alzheimer’s — and all forms of dementia — is that the brain shrinks. Initially this affects the hippocampus, the area of the brain associated with memory.
There is also an overproduction of tau, the protein made by nerve cells in the brain to maintain their shape.
The excess tau forms ‘tangles’, which affect the normal connections between neighbouring cells.
In addition, there is a drop in acetylcholine, a chemical messenger vital for memory.
Structures called amyloid plaques, clumps of a protein produced by nerve cells, are also found in the brains of those with Alzheimer’s.
After Alzheimer’s, the next most common form of the condition is vascular dementia, which accounts for 20 per cent of cases and is linked to lifestyle — it’s a bit like heart disease of the brain.
It occurs following a stroke or when the blood vessels supplying the brain become furred up or blocked.
If blood supply is cut off to a part of the brain, the brain cells die off within just six minutes.
With this, as with some other forms, there may be no memory loss at all — patients may, for example, have problems finding the right words to express themselves or have balance problems, making them prone to falls.
Some people suffer from ‘mixed pattern’ dementia, a combination of Alzheimer’s and vascular dementia.
Whereas all forms of dementia involve some form of damage to the brain, what differentiates them is where that damage occurs.
DO WE ALL GET IT EVENTUALLY?
Genetics can play a part in dementia — but only in a small percentage of cases
Dementia is not a normal part of ageing.
It’s true that as we age, even healthy brains shrink from the age of 50.
Between the ages of 50 to 65 the average brain may lose 4oz or 5oz in weight.
The levels of chemical messengers, called neurotransmitters, also drop and the brain’s ability to absorb glucose, which it needs to function, is reduced.
This is why some notice a slowing down of their mental functions or they can’t do things as quickly as they used to.
This can lead to the ‘tip of the tongue’ problem when you can’t remember a word or name.
This is incredibly common and in most cases does not mean that person is developing dementia.
In dementia, the brain cells die off faster than they normally would and there will be greater shrinkage of the brain. This leads to a far more extreme deterioration than simple ageing.
Why some people go on to develop dementia while many others don’t is not known for sure.
Lifestyle factors such as having high blood pressure or raised cholesterol increase the risk, as does being a woman — two-thirds of people with dementia are female.
Genetics can play a part — but only in a small percentage of cases.
We will cover the various causes in more detail in the weeks to come.
HOW CAN I TELL I’VE DEFINITELY GOT IT?
This is the key question. There is no definitive test for dementia.
The only way to know for sure if someone has had it is after death, in an autopsy.
But doctors do use memory tests as a basic screening device to identify those who may be at risk.
The test your GP is most likely to use is the Six Item Cognitive Impairment Test, developed in the U.S. in 1983 and updated as the 6CIT- Kingshill Version by Dr Patrick Brooke, a British GP.
Here we reproduce the test, with the caveat that you should always see your GP with any concerns.
Ask someone to put these questions to you and then score each answer to give a possible total out of 28.
There is no definitive test for dementia, but doctors do use memory test to screen people who may be at risk
1. WHAT YEAR IS IT?
(score 0 if you answer correctly, 4 if incorrect )
2. WHAT MONTH IS IT?
(correct: 0; incorrect: 3)
At this point in the test, a name and address is given and the person is asked to remember it. It should have five components, for example: Peter Smith, 56 High Street, Luton.
3. WITHOUT LOOKING AT A CLOCK, WHAT TIME IS IT TO THE NEAREST HOUR?
(correct 0; incorrect 3)
4. COUNT BACK FROM 20 TO 1
(correct 0; error 2; more than one error, 4)
5.SAY THE MONTHS OF THE YEAR IN REVERSE ORDER
(correct 0; one error 2; two or more errors 4)
6.TELL ME THE NAME AND ADDRESS I GAVE YOU EARLIER
(correct: 0; one error: 2; two errors: 4; three errors: 6; four errors: 8; all wrong: 10)
0-7 No sign of memory problems.
8-9 Some evidence of memory problems — see your GP.
10-28 High evidence of memory impairment that needs further investigation.
WHY DIAGNOSIS IS SO IMPORTANT
As most people know, there is no cure for dementia. But you shouldn’t think that this means getting diagnosed doesn’t matter.
The expert view is that it’s vital to get a diagnosis in order to start getting support in place, especially as roughly a third of people with dementia live on their own.
Also, there are drugs such as Aricept that can help to slow down the progression of Alzheimer’s disease.
It’s vital for someone with dementia to get a diagnosis in order to start getting support in place, especially as roughly a third of people with dementia live on their own
Getting the right diagnosis also matters if other conditions such as depression are compounding the underlying dementia — treatment for the depression, for instance, can make a big difference.
Diagnosis also allows help — practical or financial — to be put in place.
To get a diagnosis, the first port of call is your GP, who may carry out the Six Item Cognitive Impairment Test.
After this, the GP may order blood tests to rule out other conditions such as a vitamin B12 deficiency, as the body needs this vitamin to make crucial brain chemicals.
You may then be referred to a dementia or memory clinic; a co-ordinating centre with a full range of assessment, diagnostic, therapeutic and rehabilitation services able to accommodate the different types and the different severities.
Here, further assessments will be done, and possibly also a brain scan that can rule out other causes of the symptoms and spot signs of shrinkage.
This, however, may not be conclusive as in the early stages this shrinkage may not be obvious. So diagnosis may be delayed by months as doctors wait to see if the memory gets worse.
ISN’T THERE A BLOOD TEST?
Scientists are now working on new ways to try to improve the way dementia is diagnosed.
Already in some European countries doctors are using lumbar punctures, where cerobrospinal fluid is removed from around the spinal column and tested.
In this case, it is for the presence of two proteins — amyloid and tau — which are associated with Alzheimer’s, says Professor Simon Lovestone, professor of translational neuroscience at the University of Oxford, who is leading the trial.
Scientists are working on a simple blood test to confirm if memory lapses are early signs of dementia
He adds that the tests are used in the UK but not widely.
Professor Lovestone is heading an international collaboration funded by Alzheimer’s UK working on a simple blood test to confirm if memory lapses are early signs of dementia.
Researchers have already identified proteins that if present in a blood test could predict those with memory problems most likely to develop dementia.
‘We now know that there is a set of ten proteins that can predict whether someone with early symptoms of memory loss, or mild cognitive impairment, will develop dementia within a year, with a high level of accuracy of around 85 per cent,’ says Professor Lovestone.
‘Our next step will be to test our findings in even larger sample sets, to further improve accuracy and reduce the risk of misdiagnosis, before we can develop a reliable test suitable to be used by doctors.’
It is not known when it will be available.
A sniff test could also be on the horizon, as Alzheimer’s affects a person’s ability to smell
Finding a new reliable test that can pinpoint the disease early could change the way the disease progresses.
‘Alzheimer’s begins to affect the brain many years before patients are diagnosed with the disease. Many of our drug trials fail because by the time patients are given the drugs, the brain has already been too severely affected,’ says Professor Lovestone.
He predicts that simple phone apps could be used in the future. ‘Apple has recently launched the M Power, which can help diagnose Parkinson’s disease by the way patients pronounce ‘Aah’ [changes in speech patterns can be a symptom of Parkinson’s disease].
‘It’s possible a similar sort of screening tool could be developed for dementia, including Alzheimer’s.’
A sniff test could also be on the horizon. It has been shown that the part of the brain involved in smell is one of the earliest areas to be affected in those with Alzheimer’s.
Researchers have run a trial comparing how well people with mild to moderate Alzheimer’s disease and people without the disease identify 12 aromas including banana, apple and motor oil on.
The researchers, from the University of Leicester, found that those with Alzheimer’s were less able to identify the smells — and that the test could distinguish between those who had Alzheimer’s and those who did not with an accuracy of 86.7 per cent, according to data published in the Journal of Alzheimer’s Disease.
The researchers say it may, in combination with other diagnostic tests, help to improve early detection of Alzheimer’s in the future.
Dr Souter is a retired GP and fellow of the Royal College of General Practitioners.
Adapted by LUCY ELKINS from Your Guide To Understanding And Dealing With Dementia by Dr Keith Souter, published by Summersdale, £8.99. Order at mailbookshop.co.uk, or call 0808 272 0808. p&p is free for a limited time only.
Additional reporting: JO WATERS and ROGER DOBSON
I WAS ONLY 58 WHEN I WAS DIAGNOSED
Dementia is increasingly being diagnosed in younger adults.
Some experts believe up to 100,000 people in their 30s, 40s and 50s may have it.
Former adult educator Gail Morgan, 63, who lives in Cwmbran, South Wales, was 58 when she was diagnosed:
‘Routine is crucial. I have a calendar to put all my appointments on,’ said Gail Morgan, who was 58 when she was diagnosed with dementia (pictured with daughter Debbie)
When a psychiatrist told me I had Alzheimer’s I cried for an eternity. I kept saying, ‘Why me?’ It was a total shock. I mean, I wasn’t an “old” person.
But looking back, I can see that I was having problems long before I was diagnosed.
My boss had started pulling me up on minor things, such as grammatical errors, about six years before that.
Three years later my GP diagnosed me with dysthymia — a form of depression. I thought it was just the stresses and strains of my life.
My daughters Debbie, who’s 38, and Katy, who is 35, suspect I was simply misdiagnosed.
At the time, I was aware I was becoming forgetful. I’d go upstairs, then forget what I’d gone up for.
After my diagnosis of depression, I started going to my GP about my forgetfulness.
Two years later, I was referred to a neurologist. I had memory tests, and scans that showed my brain had shrunk and the blood vessels leading to it had narrowed, which was highly abnormal for somebody my age. That was the main reason for my diagnosis of Alzheimer’s.
They don’t know why I got it. I might just have unlucky genes.
I’ve been on Aricept tablets since 2009 to try to delay the progress of the illness, but over the past five years my health has deteriorated noticeably.
Dementia affects short term memory, while long term memory normally remains intact
Just over a year ago my daughters got carers to come in to help with my meals after they started noticing that I would put things in the oven and forget about them.
I also don’t go out by myself. A year ago, I went to the supermarket. I paid for the groceries, but just couldn’t work out how to get out of the store. I got terribly upset.
Routine is crucial. I have a calendar to put all my appointments on. When I get up I circle that day, and notes remind me to take my purse and keys if I am leaving the house.
I don’t want to sit at home feeling miserable. I have a bucket list that includes trips away, seeing musicals and going to the cinema. My mantra is to enjoy life while I can.
Interview: SHELLEY MARSDEN
THE TELL-TALE WARNINGS
Symptoms depend on the type of dementia and the area of the brain that is affected, but typical signs include:
MEMORY PROBLEMS: When we talk about memory problems and dementia we basically mean short-term memory — that is, memory for recent events. Long-term memory — recalling something that happened 20 years ago with clarity — is the last to remain intact.
This disparity comes about because when something gets committed to memory it gets imprinted on the circuits of the brain cells. The longer ago it is, the more it gets reinforced and imprinted. That’s why people with dementia can remember things from the past, even their childhood, but won’t recall what someone has just told them.
Short-term memories by definition have not been imprinted, so when brain cells die off the most recent memories are lost because they are in the cells that go first.
Not all memory problems are a sign of dementia. Issues with day-to-day memory can be a sign of mild cognitive impairment (MCI). This is not a diagnosis in itself — it can come about for a variety of reasons such as heart failure or diabetes, and only a small percentage of those with MCI will go on to develop full-blown dementia.
To determine if someone has early dementia or MCI there needs to be a referral to a memory clinic for memory tests that will be repeated at a later date to see if there has been any deterioration — which might signify dementia.
Another of the tell tale signs of dementia is struggling with everyday tasks. As the condition worsens, simple things such as unlocking a door or cooking a meal may become confusing
DIFFICULTY COMMUNICATING: Another possible sign of dementia is struggling to find the right word or finding conversations hard to follow. As a result, those affected retreat from conversations with family and friends. This occurs because the temporal lobe, the part of the brain which deals with language understanding, is commonly affected by the damage of dementia.
STRUGGLING WITH EVERYDAY TASKS: Common actions such as driving can become difficult. It’s as if they forget the steps needed. As the condition worsens, even simple things such as unlocking a door may become confusing and sufferers may, for instance, put a meal in the fridge or milk in the oven.
NOT KNOWING WHAT DAY OF THE WEEK IT IS: Losing a sense of time or place is another common symptom. People may lose track of the day, date month or even the year. They may also get disorientated, so that they can be confused about where they are, even when they are somewhere familiar to them.
Not knowing what day it is and losing a sense of time or place is another common symptom of dementia
UNABLE TO CONCENTRATE: People with dementia often stop long-cherished hobbies that demand concentration, such as reading, crosswords, or even cooking, as they may find it hard to focus or concentrate.
EMOTIONAL CHANGES: Sometimes dementia can change people’s personality, making stoical types weepy and tearful, and placid characters irritable. Unpredictable mood swings are another problem. Depression and anxiety are also common.
REPETITIVE QUESTIONS: Some people get caught in the ‘loop phenomenon’, where they ask the same question or do the same action over and over again. Inappropriate behaviour can also occur. The person may shout, scream or become aggressive and suspiciousness is common.