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Early Onset Dementia

What is early onset dementia?

Dementia is the term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person's mental functioning. It is a broad term which describes a loss of memory, intellect, rationality, social skills and normal emotional reactions. The term early onset dementia, or younger onset dementia is usually used to describe Natural formula to protect your brain & nervous system
Early onset dementia is a term that covers a range of diseases affecting memory and thinking in people under the age of 65. This group have important medical and social needs that in the past have not always been met. Although most dementias affect people who are elderly, occasionally younger people are diagnosed with dementia. Dementia has been diagnosed in people in their 50's, 40's and even in their 30's. Dementia in younger people is much less common than dementia occurring after the age of 65. For this reason it can be difficult to diagnose and its incidence in the community is still not clear.

The symptoms of early onset dementia are serious. The sense of loss for the person with younger onset dementia and their family can be enormous. Unplanned loss of income, if the main earner was the person with dementia, can be a major problem for the family. The loss of income can be made worse by the loss of the self esteem that usually comes with working, and the loss of a purpose in life. Future plans, perhaps for travel or time with children and grandchildren are no longer viable. Children may react differently to the disease, but are likely to have strong reactions. At a time when they are trying to cope with their own growing up, they find that they also have to cope with a family member who is ill. They may become angry and withdrawn. Some young people may have problems talking with parents because they don’t want to worry them or are afraid of making them sad or being an extra burden. They may prefer to talk to people of their own age or to counsellors.

To know or not to know, the genetic factors of dementia

Alzheimer Scotland has launched new information explaining the present knowledge about inherited risks of dementia. The leaflet is aimed at people who have a diagnosis of dementia, and close relatives who may be concerned about inheriting it.

Kate Fearnley, Policy Director for Alzheimer Scotland says, “A lot of people worry about dementia getting passed on down the family, and there is often confusion about the whether dementia is inherited. In fact, most cases of the illness are not inherited. The illness is so common that even having two close relatives is not evidence of a family link, although there are some rare forms of dementia which are caused by genetic faults. With most cases of dementia, your genetic make up may affect your risk of developing dementia in later life, but so do lots of other things, such as your environment and lifestyle. Having a close family member with the condition only increases your risk by a small amount.”

Familial early onset Alzheimer’s disease is caused by a faulty gene and is very rare. . A number of genes have now been identified that affect some families worldwide and cause early onset Alzheimer's disease, starting when the person is under 65 and sometimes affecting people as early as their 40s or 50s. On average, half the children of someone with one of these rare faulty genes will develop the illness. However it is important to be aware that most cases of early onset dementia are not inherited in this way.

The best known genetic risk factor for late onset Alzheimer's disease is a gene called Apolipoprotein (ApoE), which comes in three forms, one of which seems to increase the risk of developing Alzheimer's disease, but does not make it certain. Testing for this gene is not useful, as it does not predict whether someone will get the disease, and there is no special treatment for anyone who has the gene.

Kate Fearnley continues, “Anyone who would like to know more about genetics and dementia can call the 24 hour Dementia Helpline on 0808 808 3000 for an information sheet and a chance to talk over their concerns, or find it on our website, www.alzscot.org”

Terry Pratchett attacks the NHS over Alzheimer's policy
By Gary Cleland and Ben Farmer 18/04/2008

The novelist Terry Pratchett has attacked the NHS for its decision to deny an Alzheimer's drug to hundreds of sufferers like him, as he spoke about his battle with the illness.

The bestselling author, who was diagnosed with the early-onset form of the disease last year, said it is a "shock and a shame" that research funding for the disease is a tiny proportion of that available for cancer, as he donated £500,000 towards research into a cure.

Novelist Terry Pratchett was diagnosed with the early-onset form of Alzeimer's but must pay for his drugs. As someone in the early stages of the debilitating brain disease, he is denied the drug Aricept on the NHS and, like other sufferers, must pay for it himself.

The National Institute for Clinical Excellence, which advises the NHS on treatments, has ruled that Aricept - along with Reminyl and Exelon - should be prescribed only to those with more severe Alzheimer's.

It said Aricept - which costs £2.50 per day and can slow the progression of the disease to help many people continue to lead a normal life for longer - was not cost-effective for those in the disease's early stages. Campaigners failed to overturn the decision at the High Court last year.

Ahead of his speech to a conference of Alzheimer's researchers in Bristol, Mr Pratchett told the BBC that he is having to teach himself to type again after being diagnosed with Alzheimer’s Disease.

Mr Pratchett said: "The only obvious sign even to myself is that my typing, which used to be pretty good touch-typing, is now the old traditional hunt and peck."

He said it was "a huge nuisance, because like a lot of journalists I need to hit the keys in order to think".

"I’m having to relearn to type practically every day," he added.

Despite the setback, Mr Pratchett revealed that this morning that he had sent his latest book to his publishers and has already begun his next novel.

He revealed his frustrations that "the NHS isn’t really set up to deal with you" if you are an Alzheimer’s sufferer and that spending on finding a cure was just three per cent of that spent on cancer.

He said: "I think that Alzheimer’s tends to happen in the home, or in a home, and it involves a loved one and a carer and it’s fairly quiet, whereas, and I say this with a certain amount of care, there’s a kind of heroic glamour about the battle against cancer."

"With Alzheimer’s it’s a lot of skirmishing," he added.

The novelist, responsible for the hugely successful Discworld series, said that he did not believe a cure for the disease would be found his lifetime, and said he was not sure that one would ever be found.

"I think there may well be a regime, some combination of lifestyle and drugs, which helps people to live with Alzheimer’s, in the same way that there are other diseases that people do live with but never exactly see cured," he said.

In his speech, Mr Pratchett, 59, will also highlight a lack of specialists in the country.

He said: "My GP is helpful and patient, but I don't have a specialist locally.

"The NHS kindly allows me to buy my own Aricept because I'm too young to have Alzheimer's for free, a situation I'm OK with in a want-to-kick-a-politician-in-the-teeth kind of way."

Alzheimer's Disease, which progressively leads to loss of memory, confusion and an inability to complete simple tasks, affects an estimated 700,000 people in Britain.

However, the Alzheimer's Research Trust estimates that £11 is spent on research for every sufferer, compared with £289 for each cancer patient.

Mr Pratchett said:: "There's nearly as many of us as there are cancer sufferers, and it looks as if the number of people with the disease will double within a generation.

"And, in most cases, alongside the sufferer you will find a spouse suffering as much. It's a shock and a shame, then, to find out that funding for research is three per cent of that which goes to find cancer cures."

Mr Pratchett was diagnosed with a rare early-onset form of the disease in December, and his speech described his attempts to come to terms with the diagnosis.

Best-known for his humorous fantasy novels, he has sold more than 55 million books in the past 25 years and was awarded the OBE in 1998.

The author has built a devoted base of fans, but at the recent Bath Literature Festival said that increasingly he found it too difficult to write dedications when signing books for fans.

Rebecca Wood, the chief executive of the Alzheimer's Research Trust, said: "While we were deeply saddened to learn of Mr Pratchett's diagnosis, we are delighted that he has chosen to speak out about his experiences with Alzheimer's disease, to raise awareness about its impact and the desperate need for more research. Terry's generous donation will fund promising UK research which hopes to find ways to slow down or halt the disease.

"The reality is that we are scraping for every penny and have to turn down two out of every three research projects."


Dementia care costs 'crippling'
PA 26 June 2008

Sufferers of dementia and their families are facing a financially crippling "tax" burden paying for care which is often inadequate, a report has said.

More than half of people with dementia living in care homes are paying in excess of £300 per week towards their care, equivalent to £15,600 a year.

The stark findings are contained in the Alzheimer's Society's new report "The Dementia Tax", which lays bare the huge costs shouldered by sufferers and their families of paying for often sub-standard care.

The charity argues the current system of means testing for social care is a tax on people with dementia, whose care is deemed to be social care, rather than health care available free on the NHS.

Two thirds of carers looking after a person at home pay for vital care, with one in three forking out over £50 per week.

Neil Hunt, the charity's chief executive said people were having to pay for care from money set aside to heat their homes or buy food.

And he warned the country faced an increasingly serious problem, as the numbers living with dementia are expected to reach 1.7 million by 2051.

He said: "People with dementia and their families are being hit harder than almost any other group with the current system of paying for care.

"It really does have a crippling impact on family's budgets. It is an illness that may go on for ten years or more and therefore the hit is far greater than for people with other illnesses. Why is it that dementia is being exempt in this way."

Mr Hunt maintained people no longer wished to pay to "prop up a broken system that fails to deliver quality care" and a political consensus was urgently needed to introduce a fairer system of funding and charging for care.


BUPA June 2007.
Dementia is a broad term for a range of symptoms that occur as a result of damage to your brain. It's more likely to affect you if you are over 65 - this is late-onset dementia. Dementia occurring before this age is called early-onset. Diseases such as Alzheimer's disease lead to dementia. You may also develop dementia if small blood vessels become blocked in your brain.

About dementia
Symptoms of dementia
Causes of dementia
Diagnosis of dementia
Treatment of dementia
Prevention of dementia
Living with dementia
Further information

About dementia
Your brain is made up of billions of nerve cells (neurons) and these form complicated networks. Usually signals from your body or from outside pass between nerve cells across small gaps (synapses). Messages travel around your brain in this way and produce a response to the original signal. This process is helped by chemicals called neurotransmitters.

If you have dementia, the nerve cells in your brain aren't working properly and your brain can't correctly process the signals going to it. You may have problems communicating, remembering things and carrying out daily activities.

Usually, it won't be possible to cure your dementia, but some medicines can slow down its progress.

Symptoms of dementia
You may have some or all of the following symptoms if you have dementia.

You will have memory loss, particularly of recent events. This may not be severe at first but is likely to become progressively worse. Later, your long-term memory may be affected.

You may have problems finding the right words for what you want to say.

It's possible that you will have trouble thinking clearly and doing practical tasks that you used to do easily.

You may feel puzzled and disorientated in new places. As dementia progresses, you may have difficulty finding your way around in familiar places, such as your own home.

The feeling of disorientation may increase so you don't know what month or year it is, or the time of day. This could cause you to get up in the middle of the night wanting to go out.

Family and friends may notice changes in your personality and behaviour. You may become withdrawn, prone to fits of temper, or anxious and depressed.

As your dementia worsens, you may no longer be able to look after yourself. It's possible that eventually you won't recognise close relatives and friends.

Dementia is progressive and in time your symptoms will get more severe. It affects everyone differently - this is determined by factors such as your personality and the support available to you. Depending on what is causing your dementia symptoms, its course will vary. If it's a result of Alzheimer's disease, it will be degenerative (continue to get worse). It's often difficult to predict the rate at which vascular dementia will progress.

Your symptoms may stay the same for some time and deterioration will be patchy. In vascular dementia, the blood vessels (vascular system) in your brain become blocked. Not enough blood and oxygen reach the nerve cells so they die. Areas of brain tissue that have died this way are called infarcts, so vascular dementia is also called multi-infarct dementia.

This is the second most common type. Health conditions such as high blood pressure and diabetes may raise your risk of this, as does eating a diet high in salt and fat.
It's difficult to say how long you will live once you are diagnosed with dementia - the type you have influences this. The average life expectancy for people with Alzheimer's disease is six years.

Causes of dementia
The main risk factor for late-onset dementia is ageing. Over 65, your risk is one in 20, rising to one in five if you are over 80. If you are aged 40 to 65, your risk of early-onset dementia is one in 1,400.

There are more than 100 types of dementia. In the UK, the most common cause is Alzheimer's disease, accounting for nearly two-thirds of cases. If you have Alzheimer's disease, changes develop in your brain's structure. These lead to the death of nerve cells and disrupt your brain's usual activity. There is also less of the neurotransmitter acetylcholine. This is needed for communicating messages related to memory - having less of it affects your ability to remember things.

Drinking excessive amounts of alcohol could result in alcohol-related dementia because your body doesn't have enough of the B vitamin thiamine.

You may have more than one type at the same time, in particular Alzheimer's disease and vascular dementia. Your risk of dementia may be affected if someone else in your family has it. However, more research is needed to better understand this link.

Diagnosis of dementia
If you think you may be developing dementia, or that someone you know may be affected, it's best to see your GP. You won't usually get a definite diagnosis at your first visit, especially if you are in the early stages. Your GP may follow your progress for several months to make a more definitive diagnosis.

Your GP is likely to ask about your medical history, as well as that of your family. He or she will probably give you a physical examination and may do blood and urine tests to rule out the possibility of other conditions that could be causing your dementia symptoms. Your GP may carry out memory tests - one that is often used is the mini mental state examination.

Depending on the outcome of the tests, your GP may refer you to a specialist doctor, psychiatrist or psychologist. He or she may do more detailed tests and suggest that you have a brain scan (either a CT, MRI or SPECT scan) to provide more information.

It's difficult for doctors to diagnose what type of dementia you have as the symptoms are very similar for all of them. However, as medicines advance, it's important to find out what is causing your dementia as some types can be treated and the symptoms slowed down.

Treatment of dementia
It may be possible to cure some cases of dementia caused by vitamin deficiency or head injury. In all other cases this won't be possible. However, medicines can treat your symptoms and prevent them coming on as quickly.

Improving memory and concentration
There are now three medicines that your doctor may prescribe if you are diagnosed with Alzheimer's disease. They are donepezil (Aricept), galantamine (Reminyl) and rivastigmine (Exelon). They reduce the rate at which acetylcholine is destroyed so there is more of it available to transmit messages around your brain.

As with all medicines, you may have side-effects, including nausea and tiredness. It's worth carrying on taking the medicine as the side-effects usually fade after a few weeks.

The National Institute for Health and Clinical Excellence (NICE) provides guidance on effective treatment. NICE has recommended that these medicines should only be offered if you have moderate Alzheimer's disease. If you have early Alzheimer's disease, you won't be eligible to receive the medication.

The medicine memantine (Ebixa) works differently. It's used for severe dementia.

Reducing psychiatric problems
As dementia progresses, you may feel depressed. Your GP may prescribe you antidepressants but there isn't much evidence over whether they are effective.

Your GP may also give you tranquilisers if there are changes in how you feel that cause you to be aggressive or restless.

Other treatments
There is a range of other therapies that you may find helpful, such as:
• reminiscence therapy - discussing past events in groups, usually using photos or familiar objects to jog your memory

• reality orientation - reminding you of where you are and what is going on at the current time

• complementary therapies and herbal remedies, although evidence to support these is mixed - speak to your GP before taking any herbal remedies or vitamin supplements

Prevention of dementia
Some things you can do to try to reduce your risk of developing dementia include:
• eating a diet high in fruit and vegetables and low in saturated fat
• keeping active both physically and mentally - taking regular exercise and playing cards or doing crosswords
• avoiding blows to your head

Living with dementia
Caring for someone at home with dementia can be a difficult and upsetting time. As their condition deteriorates, you are likely to notice changes in how they behave and symptoms may be hard to cope with. You may experience emotions such as:
• a sense of loss and loneliness
• anger or frustration
• guilt
As well as family and friends, emotional and practical support is available from:
• occupational therapists
• voluntary organisations
• social services
• other carers and support groups
Some hospitals and residential homes offer short-term care for people with dementia to give their carers a break. In time, you may need to find a care home for the person with dementia if you are no longer able to look after them and provide dementia care at home.

Further information

Government Strategy on Early Onset Dementia: (1718 KB PDF)
Mental Health Foundation
020 7803 1101
Alzheimer's Society
020 7306 0606
Carers UK
0808 808 7777

See also
Facing up to dementia
Britain's ageing population 'as big a threat as climate change'
GPs to get extra training to detect dementia

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