Alzheimer’s & Dementias
If you are a person affected by dementia, this book is for you. You may have recently been told your diagnosis, you may be caring for someone with memory loss, you may know someone who has dementia. Whoever you are, the confusion that is the main feature of dementia does not affect only the person with the condition. Careers, family members and friends are also bewildered and confused by what is happening to the person they know. Often when the diagnosis is first made you do not think of all the questions that you want to ask or you may feel you are not ready to ask them. But as time passes you will probably want to know as much as possible about dementia and how to care for someone who has it. Knowledge is the best way of lifting the cloud of confusion and taking charge of the situation for you. Although these texts are written mainly for people with dementia and their family and careers, it will also be useful for care workers in the community and in hospitals and residential and nursing homes.
Many of the questions answered, particularly about communication, behaviour and treatments, are the same whoever you are or wherever you are working. People who have been given a diagnosis of dementia may find parts of the texts useful, perhaps particularly that on dementia itself and on legal and financial arrangements. As the earlier diagnosis is achieved, more people with dementia want and are able to plan their own treatment and care.
These texts are about all types of dementia, including Alzheimer’s disease, which is the most common type, and vascular dementia, which is second most common. Although members of the public quite often use the name Alzheimer’s disease to refer to dementia in general, in these texts the name is used only for that particular type of dementia.
Most of the questions and answers will be relevant whatever form of dementia you are concerned with.
The texts answer 276 questions. All of them are real questions asked by careers, by friends and family members and by people with dementia themselves. We have tried to answer them as clearly and as accurately as we can. Research into Alzheimer’s disease and other dementias is moving fast, new treatments are becoming available and, of course, the law on mental health and on benefits is subject to change, so you will need to check the details if you are using these texts sometime after it was published.
(1) Alzheimer’s & Dementias
What is dementia?
There are many different types of dementia. This chapter will give you information on what dementia is and on most types of dementia other than Alzheimer’s disease. Because Alzheimer’s disease is the most common type. In all types, there is a decline in mental function, especially memory, and disturbance of daily activities and social relationships.
Dementia’ is a term used to describe various different brain disorders that have in common loss of brain function, which is usually progressive and eventually severe. There are over 100 different types of dementia. The most common are Alzheimer’s disease, vascular dementia and Lewy body dementia. People with dementia have particular problems with their short term memory. They consistently forget things that they have just said or done, even though they can often recall clearly events that happened many years ago. Their sense of time and place is typically lost as the disease progresses. They may develop problems with finding words, and it becomes increasingly difficult for them to learn new information and to do new things. As time goes on, people with dementia need help to do even the most basic tasks of everyday living, including washing, dressing and eating. Eventually, people with dementia may become uncommunicative and incontinent.
Sometimes there are severe behavioural problems. Most people with dementia eventually require 24-hour care. Whatever the type of dementia, the disease often goes on for many years, and often people die of something else.
My family tell me that my grandmother became ‘senile’ before she died. Does this mean she had senile dementia or could she have had Alzheimer’s disease?
People quite often use the term ‘senile’ to describe old people who have become confused in their thoughts. Strictly speaking, the word ‘senile’ just means old, but people have often used it in common speech to mean senile dementia (an unhelpful term that should not be used).
If your grandmother’s ‘senility’ lasted for months or years before she died, it is likely that she did have some form of dementia, and the most common form of dementia is Alzheimer’s disease. However, if your grandmother’s mental problems developed only in the last weeks or months of her life, it is more likely that she did not have dementia but that her brain function was being affected by a disease elsewhere in her bodies, such as the liver, kidneys or heart.
As people get older they tend to become more forgetful, but this is sometimes part of the natural ageing process rather than dementia. Some people refer to any older person who is a bit forgetful as being senile, but this term should not be used at all.
I’m 52 and have been told I have early-onset Alzheimer’s disease. What is this? Is it the same as ‘pre-senile dementia’?
Although the term pre-senile dementia sometimes still appears in textbooks, it should not be used. In the past, the distinction tended to be made around the age of 60. ‘Senile dementia’ is just another term for dementia appearing in older people. Most of what used to be called pre-senile dementia and senile dementia are in fact Alzheimer’s disease.
At 52 you are quite young to be diagnosed with dementia. In fact, fewer than 2 in 100 cases of dementia occur in people under 65, so it is quite possible that, in the past, your dementia would have been referred to as ‘pre-senile’. Having dementia so young can bring its own set of problems because people may still be at work and have young children. Another problem is that many areas of the UK do not have specific services for younger people with dementia.
Although Alzheimer’s is the most common cause of dementia in people under 65, there are many other uncommon causes which may require specialist assessment. For this reason, it may be best for you to have an opinion from a neurologist or psychiatrist specialising in this field.
I have been told that my next-door neighbour has dementia but that she does not have Alzheimer’s disease. What other sorts of dementia are there?
There are a number of different types of dementia. All of these affect the brain and cause a progressive loss of memory that may eventually make it impossible for the affected person to perform even the simplest everyday tasks without help. Alzheimer’s disease is the most common type of dementia, accounting on its own for about half of all cases. There are, however, quite a number of other types of dementia and it seems that your neighbour has been diagnosed with one of these. Among these other types of dementia, all but vascular and Lewy body dementia are rare.
Types of dementia other than Alzheimer’s disease include:
• Vascular dementia, which is usually the result of brain damage due to tiny strokes;
• Lewy body dementia, which has some features in common with Parkinson’s disease;
• Frontotemporal dementia, for example, Pick’s disease, in which there are striking changes in behaviour before the memory problems appear;
• Huntington’s disease, also sometimes called Huntington’s chorea, which is characterised by jerky movements in addition to dementia;
• AIDS-related dementia;
• Dementia that sometimes occurs together with Parkinson’s disease;
• Creutzfeldt–Jakob disease (CJD);
• Dementia due to a brain tumour;
• Normal pressure hydrocephalus, due to a build-up of fluid in the brain;
• Dementia due to an excessive intake of alcohol over an extended period of time;
• Dementias due to various treatable causes, including vitamin deficiency, hormone deficiency and syphilis.
WHO WILL GET DEMENTIA?
How common is dementia, and is it more common in some groups of people than others?
The chances of developing some form of dementia increase with age, but dementia does occur very rarely in people under the age of 60. Over the age of 65, dementia affects approximately 6 people in 100. For people over 80, the number affected rises to 20 in 100.
Similar rates are seen in other countries across Europe. It is estimated that there are currently about 700,000 people with dementia in the UK, and this is set to double by 2050. Some researchers have suggested that there are over 24 million people world-wide who have dementia, with 4.6 million new cases annually. In general, dementia seems to affect all groups in society equally. It is not known to be particularly linked to gender, social class, ethnic group or geographic location.
CAUSES OF DEMENTIA
Can stress or worry cause dementia?
There is no evidence that stress or worry is responsible for causing dementia. However, stress or worry can lead to forgetfulness and confusion that may sometimes be mistaken for early dementia. It is also true that a diagnosis of dementia is sometimes made only after a period of stress or worry has made the disease more apparent, even though dementia has in fact been present for some time. Anxiety is a common symptom of depression in older people and the presence of depression can result in severe memory problems that may be mistaken for dementia.
My husband has been told that he has some sort of dementia and that he should give up smoking. Can smoking cause dementia?
Smoking is not thought to be a direct cause of dementia, but it can contribute to heart disease and atherosclerosis (narrowing of the arteries), which often leads to strokes. One form of dementia, called vascular dementia, is often caused by strokes, which cause brain damage by cutting off the blood supply to areas of the brain. Not all doctors agree that giving up smoking is likely to have much effect on the course of dementia once this disease is already apparent, and you may find that your husband has difficulty stopping smoking. However, stopping smoking can be recommended on many other health grounds, and may help to prevent strokes which could make his dementia worse. A lot of help is now available for people who want to stop smoking. Your husband’s GP will be able to help or you could phone Quit – a charity dedicated to helping people stop smoking – for advice.
My father, who is 72, has recently had an operation on his bowel. He was a bit forgetful before he went into hospital but now he is home again he is very confused. Might the operation have given him dementia?
Some older people have temporary confusion after an operation. The after-effects of the anaesthetic and taking pain-relieving drugs may increase confusion for a short time. Confusion may also be made worse by having to cope with the unfamiliar environment of the hospital.
If your father’s confusion persists, it is possible that he did have dementia before the operation, which has been made worse. Occasionally, dementia can be triggered by an operation: during an operation older people may be vulnerable to having little strokes or temporary problems with the blood supply to the brain, which can cause lasting confusion.
Another possible explanation for your father’s increased confusion is that he has picked up a chest or urinary tract infection. This possibility is less likely if the operation was some time ago. However, do speak to his doctor about your concerns, as treatment of an infection or a change in your husband’s medication can sometimes bring about a dramatic improvement.
Can head injuries cause dementia?
People who suffer severe or repeated head injuries may be at increased risk of developing dementia. However, the link between head injuries and dementia is not straightforward. It is possible that a head injury may trigger the disease process in susceptible individuals. People who have sustained serious head injuries through boxing are prone to a type of dementia known as ‘dementia pugilistica’, which is similar to Alzheimer’s disease.