1. Alzheimers disease
The term Alzheimer's disease refers to a condition discovered by a doctor called Alois Alzheimer. In 1907 he wrote in medical textbooks about a woman of 51 who had died of dementia, whose brain he had examined under the microscope.
This examination showed changes he had never seen before. In certain parts of the brain, were tangled together, and in other areas there was clumping of brain matter. As time went on, he discovered more "younger" people who had died of dementia had the same brain abnormalities. This condition was to be known as Alzheimer's disease.
It was subsequently noted that the same type of dementia (With the same symptoms) occurred much more frequently in older people, i.e. when their brains were examined under a microscope, the showed the same abnormalities.
At this time, only younger people were diagnosed with Alzheimer's disease as this was what Lois Alzheimer had concentrated on. Older people were diagnosed with pre-senile dementia or Senile dementia of the Alzheimer type (SDAT).
This differentiation made things complicated however and nowadays because dementia in younger people is comparatively rare; it is now common to refer to the whole group as Alzheimer's disease.
The term "Alzheimer's disease" can't possibly convey the complicated set of symptoms that make up this condition unless you personally know someone who suffers from it.
A more complicated and definitive definition from the Royal College of Physicians describes Alzheimers disease as
"Dementia is the global impairment of higher functions, including memory, the capacity to solve the problems of day to day living, the performance of learned perceptuo-motor skills, the correct use of social skills, and the control of emotional reactions in the absence of gross clouding of consciousness.
Performance of learned perceptuo-motor skills = our learned responses such as washing, dressing and eating.
These definitions are only guides to the whole complicated medical condition known as Alzheimers disease.
2. Memory loss in Alzheimers disease.
Memory loss occurs in all cases of Alzheimers, but in the early stages it can be difficult to detect as people manage to cover it up well. The most recent memories are the first to go, and it's only much later as the Alzheimers condition has become much more severe does the past memory become affected.
The things we've done recently such as in the last hours days or even weeks are placed in our short term memory and it's this recent storage capacity that people with Alzheimers seem to have problems with.
Because memory loss is such an important feature of Alzheimers disease and can also be easily tested for, it forms an important part of the assessment tool which is used to diagnose Alzheimers.
A common test which used to be used extensively was to ask the person suspected of having Alzheimers a series of questions. These covered both the short and the long term memory.
Ten questions commonly asked included
- How old are you
- What is your date of birth
- What day is it today
- What month are we in
- What year is it
- When was the first world war
- What is the name of the prime minister
- Where are you now
- Count backwards from 20-1
- Tell them an address, then ask them to repeat it back to you after five minutes
If the person is co-operative and has been asked these questions in a nice way, (not officiously), this is quite an easy test to perform. It's also a useful test to help diagnose Alzheimers or dementia as it is quick, non invasive and cheap to use. It also gives a rough guide to the areas in the person's memory where there may be problems.
These questions test a person's short term and long term memory problems and they also test for orientation as well.
A low score on its own doesn't prove dementia or Alzheimers disease, because not all people will know all the answers to the questions anyway! It's just a guide to prove that something may be wrong and needs further investigation.
3. Disorientation and Alzheimers Disease
Disorientation (or not knowing who or where you are or what day month etc it is), is very common in Alzheimers disease. It's also noted as one of the defining early symptoms, and as it is very closed connected with a person's memory or the ability to remember, it's not surprising.
Little things disappear first, and it's usually so gradually it's not noticed for weeks or months by family or friends.
For instance, an Alzheimer's sufferer may look around them puzzled as they are not sure where they are, even though it may be familiar surroundings. They will forget your name or birthdays.
It's usually the more distant things that tend to disappear first such as the current year, or year of birth. It might be the part of the date of someone's birthday that is used the least they tend to forget or become puzzled about.
Gradually the symptoms of Alzheimers disease will become more pronounced, they will forget the correct month or time of year, then they will be unsure of the days of the week or what their own name is. Eventually their memory loss will become so poor they remain in a constant state of disorientation and confusion.
Getting lost outside the home is a problem usually towards the later stages of the illness. There are many stories told of people who travel to a home they lived in 30 years or so previously.
This is because their short term memory is dysfunctional, and been replaced with their long term memories. They no longer remember they moved from that house so many years ago.
Alzheimers disease in the later stages can pose extra problems for those people for whom English for instance is a second language.
Because their short term memory is affected, people who suffer with Alzheimers disease often lose the ability to speak or understand others speaking in their adopted language. This can of course cause further communication problems with others around them.
Eventually even their ability to read, write and converse is lost and the Alzheimers sufferer retreats into their own little world.
4. Disorientation and Alzheimers disease in the home.
Disorientation inside the home can eventually become a problem though not until much later in the disease.
This is why it's so important that absolutely nothing is moved or changed around in the home of someone who is suffering from Alzheimers disease. Moving furniture or their own items disorientates them and makes their confusion worse.
Sameness and continuity are important to the person suffering from Alzheimers disease. If their routine continues undisturbed, they will remain continent, eat, go to bed or put the television on because this is a familiar pattern to them.
It's a well known fact by carers and professionals that Alzheimer sufferers are much happier in their own environment for as long as it is possible to keep them there. Once they are moved to a strange environment their acute confusion becomes much worse and more apparent to often distressed relatives and friends.
A classic example of Alzheimer sufferers being moved to another environment is if they are admitted to hospital. Because this is such a busy bustling environment, their confusion and disorientation becomes frighteningly apparent.
Many carers and friends think it is the fault of the hospital that their relative or friend appears so different, but it's usually because the Alzheimer sufferer has been able to disguise their waning cognitive skills by embracing their familiar comfortable environment. It's only when they are "torn" from it that problems become apparent. They often become incontinent, refuse to eat, and become tearful and depressed.
This is why admitting someone with Alzheimers disease to hospital should only be done as a last resort; otherwise they run the risk of being deprived of their last precarious hold on reality and independence.
An Alzheimers sufferer assessed in a hospital environment making a cup of tea, or performing other tasks would probably perform terribly, yet if asked to perform that same task at home would probably do moderately well.
This is because they have slotted back into their own comfortable routine, and is why home visits for people suffering from Alzheimers are so important after they have been admitted to hospital to ensure they are not being assessed wrongly and placed in an inappropriate environment.
5. Alzheimers Disease and Personality
One of the most distressing aspects of Alzheimers disease is the complete change of personality many people suffer. This is especially distressing for their relatives and friends. The personality and general behaviour of Alzheimer suffers in the later stages often seems to be in complete contrast to the usual behaviour they have always exhibited in their previous life.
Another quality of Alzheimers disease and changes in personality is sometimes an underlying feature of the person's character which had previously been well hidden. For instance spiteful traits can be revealed, or a tendency to anxiety, nervousness or aggression both verbal and physical can surface again mainly in the later stages.
Many Alzheimer sufferers remain their old self albeit with accompanying memory loss and orientation problems, but others can have varying mood swings which can fluctuate from being ecstatically happy to very sad.
In the later stages of Alzheimer's disease, these underlying traits can become very prominent and cause lots of problems, i.e. verbal aggression, continuing anxiety which requires continuous reassurance from carers and friends.
Very often personal hygiene becomes a major issue with Alzheimer disease sufferers. Washing and bathing is often forgotten or becomes very infrequent, Alzheimers disease sufferers who were very fastidious with their hygiene etc become very lax.
This can be very distressing for their friends and relatives, especially if clothing is stained with urine or faeces. (Many Alzheimer sufferers leave the toilet before they are finished, or they don't clean their butt or private parts correctly. "Body odour" therefore especially can become a problem, as can also soiled clothing and hands.
Undressing in public and "accidental" flashing or fondling of genitals can become a problem if not carefully monitored. This can also cause untold embarrassment to carers and relatives.
Sometimes it is forgotton by some carers and relatives that it isn't the act of soiling or untoward behaviour that needs to be taken into account, but the importance of dignity being maintained at all times. Dignity is a very precious commodity to own when suffering from Alzheimers disease, as this is often all they have left.
6. Alzheimer’s disease and Communication.
Speech is frequently affected in Alzheimer’s disease. An understanding of simple speech remains intact during the early stages, but difficulties in finding and expressing the correct word usage can start very early on in the disease.
The Alzheimer sufferer also experiences difficulty in interpreting complex conversations, proverbs and metaphors. In other words, it becomes very difficult to string a complex sentence together.
Later as the Alzheimer’s disease progresses, sentences become difficult to finish. The sufferer will usually wander onto another subject and they often repeat the same words over and over again.
Writing and reading can be affected quite early in the disease, with spelling difficulties becoming apparent. There is also an associated lack of interest in the task involved, and they are very often left uncompleted.
The taking of messages especially over the telephone can prove particularly difficult, and is often the catalyst that uncovers the dementia in the first place. The Alzheimer’s disease sufferer will have difficulty following the conversation. They will probably realise they are having these difficulties become more confused and frightened, which will make their problem worse.
As the Alzheimer’s disease worsens, communication problems increase. As the ability to find the words needed to complete a sentence or become involved in a conversation decreases, other words (paraphasias) are added into the gaps left. This usually means the true meaning of the conversation is lost.
Comprehension skills also decrease; questions may not get answered, because they are not understood, keeping a sentence going often proves too difficult for the sufferer and the often swift changes of subject we all indulge in proves too much for them.
Eventually their whole speech often becomes babbling gibberish, and gradually the Alzheimer sufferer withdraws from talking altogether.
In advanced stages of the disease, communication eventually becomes impossible as the sufferer is usually unable to let even their basic needs be known to others.
In a few Alzheimer’s sufferers, there may be some automatic verbal response on occasion, but usually by this time the burden of communication more often than not falls on the shoulders of relatives, friends and carers.
7. Alzheimer’s disease and sexual behaviour
Inappropriate sexual behaviour in a person suffering from Alzheimers disease can cause problems on occasion. There is no reason whatsoever why a couple can’t continue a loving relationship until quite late into the disease as long as both parties are happy to this. However as the Alzheimer’s disease progresses and the sufferer becomes more disabled, sexual activity usually naturally declines.
There can be inappropriate sexual incidents when sexual urges are revealed at unsuitable times and places. This is often assumed to happen to men only, but women can also display this type of characteristic.
It can be both tiresome and embarrassing. A man may wish to continue his previous relationship with his wife, but she is now reluctant to do this. If he doesn’t understand the reasons why, it could become very distressing for him.
In the later stages of the disease, the sufferer may make advances to their carers. This can be distressing for the carer especially if they are not used to dealing with people with this type of dementia. The carers themselves often need full support to enable them to deal with inappropriate sexual behaviour.
Other problems associated with inappropriate sexual behaviour and alzheimer’s sufferers includes fondling of their genitals/private parts. This can lead to full masturbation at inappropriate times and places which again can be very upsetting and embarrassing for carers and other observers.
Keeping the alzheimer’s sufferer occupied and diverted can be a good method for distracting them from this behaviour. However the sufferer should also be checked for signs of irritation or infection, as they may be simply scratching or rubbing at a place that is causing them some discomfort.
Appropriate clothing can lesson the activities of inappropriate masturbation or exposure of genitals. Trousers for women and trousers with no fly opening for men is a dignified way of accomplishing this.
However if the sexual behaviour rises to an intolerable level for the carers or family, and the dignity of the alzheimer’s sufferer is compromised, then medication from a health care provider who specialises in this type of behaviour can be obtained. This of course should only be done as a last resort.
8 Alzheimers disease and Risk
One of the main problems facing the carers of a person suffering from Alzheimer’s disease is how much “risk” should they be exposed to.
It’s very tempting to wrap a person up in cotton wool that start shows signs of exhibiting Alzheimer’s disease. However it is important that the routine of that person is disrupted as little as possible especially in the first stages when it’s all new and frightening.
Of course as the disease progresses, it’s important to ensure disruption to their routine is kept to a minimum as this enables the alzheimers sufferer to be independent for as long as possible.
Carers feel a responsibility towards their charge; they obviously want the alzheimers sufferer to be kept in as safe an environment as possible. Watching someone who is in the early stages of Alzheimer’s disease going for a walk because this is what they have always done etc can be very difficult.
It can also be very easy to stop them making a cup of tea or a simple meal because they are worried about leaving the oven or stove on and the risks of scalding burning type accidents etc can be very real.
There are few ideal solutions to this problem, and carers and friends should discuss with relevant health care professionals what type of risks are sensible to allow the alzheimer’s sufferer to take. Some risk factors can be kept to a minimum, others such as accidents, illness etc need to be monitored carefully.
It should be remembered people with confusion still have their “rights” and the right not to be a “prisoner” in their home is one of the risks that should be discussed.
Measures can be taken to minimise areas of concern. For instance homes should be well lit and warm. Very hot surfaces such as radiators or open fires should be avoided or adequate measures put in place to make them safe.
Floors should have no slip/trip hazards, worn or loose carpeting should be avoided. Sturdy banisters should be in place on stairs. And doors and windows should have a sturdy locking system. All appliances considered dangerous and unsuitable for use by the alzheimers disease sufferer should disconnected where possible.
Keep walking areas uncluttered and ensure shoes and slippers etc fit well. Ensure medication is closely supervised, it’s very easy for the person with Alzheimer’s disease to forget they have had their medication, and take it again repeatedly.
9 Sleep and Alzheimer Disease
People often assume as we get older, we need less sleep. (This is true for many people). However the opposite can be said for others. Basically everyone has their own sleeping pattern which suits them best.
The sleep needs of an Alzheimers disease sufferer may not change, but what often happens is their cycle becomes reversed. In other words, they may want to sleep all day and be wide awake at night.
This isn’t a problem in itself though it can be very distressing (and tiring) for their carers especially if they become disruptive and noisy by moving around in the main acting as though it is the daytime.
It’s very tempting to use medication to help the Alzheimer’s disease sufferer sleep at night though eventually it may become necessary. Sleeping sedatives can often exacerbate their confusional mental state which then makes the person more difficult to care for. (It’s a vicious circle).
A small glass of their favourite tipple is often a good idea, as is a warm drink, though remember urinary incontinence may need to be considered.
It’s much more appropriate to keep the alzheimer’s sufferer awake as long as possible during the day though it’s often tempting to let them sleep for long periods as it gives the carer some respite to do chores have a few minutes, or even take a nap themselves.
Make sure it isn’t other problems causing the restless nights; this could include incontinence, night cramps or joint pain. Sometimes even two paracetamol just before bedtime can alleviate some of these problems, so it’s worth checking out.
Keeping the alzheimer sufferer gently active during the day is a good way of helping them to re-establish a sleeping pattern where they settle again at night.
If this proves to be unworkable, many people use night sitting services. These can be very useful as the alzheimer sufferer is able to wander about closely supervised, and the carer is able to have a few nights undisturbed sleep.
Even if a service like this can only be used for one or two nights a week, at least the carer is getting some quality sleep.
10. Malnutrition and Alzheimer’s disease
One of the most disturbing aspects of Alzheimer’s disease is the problems associated with eating and drinking.
Very often alzheimer disease sufferers develop food fads though it is mainly later in the disease that severe malnutrition can occur. It’s difficult to make an adult eat especially if they are stronger than you or they have developed a fear or severe dislike to what you are trying to give them. It can be a very difficult situation for carers to find themselves in.
It’s important to ensure the alzheimer sufferer receives a well balanced nourishing diet. It’s also important that special attention is paid to adequate fluid intake. Fluid is an integral part of anyone’s diet, and as the alzheimer sufferer will often forget or not bother to ask for a drink.
It’s relatively easy to not realise their fluid intake is insufficient, especially in hot weather or if the central heating is on full blast. Drinks should be offered on a regular basis, and a cold drink left nearby to remind the Alzheimer sufferer to take fluids. An excellent way of ensuring vitamin C is consumed, is offering orange juice.
Fruit and vegetables provide the vitamins and fibre needed to keep the body well nourished. Further fibre can be obtained by consuming wholegrain bread and biscuits.
If the alzheimer sufferer spits out their food or refuses to eat, this will need further investigation. They may have some gum disease or intestinal problem. Their dentures may have become loose fitting (especially if they have lost weight), or they may have lost their sensation of taste.
They may also have some difficulty in swallowing which would need further investigation as this could be a sign of more serious problems.
It’s also a good idea to ensure the alzheimer disease sufferer has been having their bowels open on a regular basis. Constipation is one of the leading causes of loss of appetite in many alzheimer disease sufferers, and if not treated can lead on to more serious problems. Regular medication (aperients) can be given for this which softens the stool and encourages the person to expel it. Try and stay away from the more harsh aperients until it is absolutely necessary. These encourage the bowel to become sluggish and lazy.
Constipation is another reason why lots of fluid intake is important. Fluid helps to soften the stool and makes its passing much easier.