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What is Alzheimer's?


While the risk of developing dementia increases dramatically with age, most older people do not develop the condition. It is not an inevitable consequence of getting older. Just one in five people in their eighties, for example, are affected by it.

Dementia is not associated with any particular race, gender or culture. People in all walks of life may be affected – university professors, labourers, doctors, scientists, artists, cleaners, office- and factory workers. The late Ronald Reagan was one high-profile person with Alzheimer’s and Discworld author Terry Pratchett is another.

Visit www.alz.org/alzheimers_disease_4719.asp to view "Inside the Brain: An Interactive Tour". The Brain Tour explains how the brain works and how Alzheimer's affects it.

The links below provide some valuable information and insight into what Alzheimer's is all about:

10 warning signs

10 warning signs

  • A memory problem NOT caused by alcohol abuse or head injury, and that worsens over time.
  • Language Problems. Difficulty naming objects, finding the right word to use in a sentence.
  • Zips and Buttons are difficult to fasten. People with Alzheimer's find it hard to dress themselves.
  • Hygiene. Those with Alzheimer's may not care about how they look and may not want to bath.
  • Extreme mood swings. A change in mood for no reason – like being calm then suddenly scared or angry and aggressive, within minutes.
  • Impaired judgement. Strange behaviour – like wearing underclothes over top clothes or taking clothes off in public.
  • Many people with Alzheimer's get lost in familiar places such as their own neighbourhood.
  • Even recognition of their own family and friends becomes difficult.
  • Recalls memories of childhood at times, but cannot remember anything that happened the same day.
  • Suspicious of other people and may accuse them of stealing or hiding things.

Questions and answers

Questions and answers

Question: What is Alzheimer's disease?
Answer: Alzheimer's is one of the causes of dementia.

Question: What is dementia?
Answer: Dementia is an illness that affects the brain. It is usually the brain of old people that is affected, although sometimes adults from 60 years old can also get the illness.

Question: How does it affect the brain?
Answer: Nobody knows what the cause is, but what happens is that the brain has a disease that makes it become smaller and smaller. People then change in that they become very forgetful. They lose things and then do not know where to find them, or they get lost, forget to bath or change their clothes and they may accuse people of stealing from them or accuse their partners of being unfaithful.

Question: Can you catch this disease from other people?
Answer: No.

Question: When did this disease start?
Answer: It has been here for a long time. The thing is that people are now living longer so there are more people with the disease.

Question: Can you get this disease from your parents or grandparents if they had it?
Answer: Not necessarily. Anyone over the age of 60 can develop the disease.

Question: In which countries is this disease found?
Answer: It is all over the world.

Question: Can the abuse of alcohol or any other drugs cause the brain cells to die?
Answer: Yes, but remember that Alzheimer's is just one of the causes of dementia. Alcohol and other substances and illnesses can also cause dementia.

Question: How do you know if someone has got the disease?
Answer: If people start to forget things that they always knew and maybe also do strange things, they need to be taken to a doctor who will do tests to find out what is wrong. The person's behaviour could be caused by another illness that can be treated and cured.

Question: Can Alzheimer's be cured?
Answer: No, but some of the symptoms can be treated. The medicine that is given can sometimes help the person to be calmer.

Question: Can this medicine have other effects on the body?
Answer: Yes, in some people. If it does happen, then the medicine is stopped.

Question: What happens then?
Answer: Whether or not the person is on medicine, he still needs to be looked after and helped to do things that he cannot do for himself.

Stages of the disease

Stages of the disease

Early stage dementia
This phase may only be apparent in retrospect. At the time it may be missed or put down to ‘overwork’, ‘laziness’ or ‘old age’. The start of dementia is very gradual and it is usually impossible to identify the precise moment it starts. The person may:

  • Be apathetic
  • Show less interest in hobbies or activities
  • Be unwilling to try new things
  • Find adapting to change difficult
  • Become less good at making decisions or plans
  • Be slower to grasp complex ideas
  • Blame others for ‘stealing’ mislaid items
  • Become more self-centred and less concerned about others and their feelings
  • Forget details of recent events
  • Be more likely to repeat himself or herself, or lose his or her train of thought
  • Become irritable or upset if he or she fails at something

Middle stage dementia

Here the problems are more apparent and disabling. The person may:

  • Be very forgetful of recent events – memory of the distant past generally seems better, but some details may be forgotten or confused
  • Be confused regarding time and place
  • Become very clinging
  • Rapidly become lost if not in familiar surroundings
  • Forget names of friends or family, or confuse one family member for another
  • Forget about the saucepans on the stove or kettles boiling and may leave the gas on whilst it’s unlit
  • Walk around streets, perhaps at night, sometimes becoming lost
  • Behave in ways that may seem odd – for example, going out in nightwear
  • See or hear things that are not there
  • Become repetitive
  • Neglect hygiene or eating, perhaps claiming to have bathed or eaten when that’s not the case
  • Become angry, upset or distressed very rapidly

Late stage dementia

Here people are more disabled and need a great deal of help. They may:

  • Be unable to find their way around
  • Be unable to remember for even a few minutes that they have, for example, just had a meal
  • Constantly repeat one or more phrases or sounds
  • Be incontinent of urine and/or faeces
  • Show no recognition of friends and relatives
  • Need help or supervision with dressing, feeding, washing, bathing and using the toilet
  • Undress at the wrong time or in public
  • Fail to recognise everyday objects
  • Have difficulty communicating or understanding what is said
  • Be disturbed at night
  • Be restless, perhaps looking for a long-dead relative or for a small child now grown up
  • Be aggressive, especially when feeling threatened or closed in
  • Make involuntary movements
  • Have difficulty walking

Using medicines safely

Using medicines safely

People aged 65 and older consume more prescription and over-the-counter medicines than any other age group. Older people tend to have more long-term, chronic illnesses such as arthritis, diabetes, high blood pressure and heart disease, than do younger people. Because they may have a number of diseases or disabilities at the same time, it is common for older people to take many different drugs.

Using medicines may be riskier for older adults, especially when several medicines are used at one time. Taking different medicines is not always easy to do right. It may be hard to remember what each medicine is for, how you should take it and when you should take it. This is especially so for people with memory problems or dementia.

Medicines may act differently in older people than in younger people. This may be because of normal changes in the body that happen with age. For instance, as we get older, we lose water and lean tissue (mainly muscle) and we gain more fat tissue. This can make a difference in how long a drug stays in the body.

The word "drugs" can mean both medicines prescribed by your doctor and over-the-counter (OTC) medicines, which you buy without a doctor's prescription. OTCs can include vitamins and minerals, herbal and dietary supplements, laxatives, cold medicines, and antacids. Taking some OTCs together with prescription medicines can cause serious problems. For example, aspirin and ginkgo biloba should generally not be taken with warfarin (Coumadin). Be sure your doctor knows what medicines you are taking and assures you that it is safe for you to take your medicines together. Also ask about taking your medicines with food. Herbal supplements also should be taken with care. Gingko biloba, for instance, should not be taken with aspirin, acetaminophen, warfarin, or thiazide diuretics because it may increase blood pressure and the risk of bleeding problems.

A specialist physician has said, "Be wary of the claims made by manufacturers of supplements. The homocysteine level, for instance, is simply a marker of susceptibility to vascular damage."

The Sunday Times of 7 February 2010: "Taking ginkgo biloba, St John's wort and other widely-used herbal supplements may be risky for people on heart medication. They may increase the potency of prescription drugs for heart disease or make them less effective. Mixing herbs and drugs could also cause serious heart-rhythm problems and bleeding, according to a review published in the Journal of the American College of Cardiology. Use of herbal supplements among elderly patients is of particular concern, because they typically have more than one disease, take multiple medications and already are at greater risk of bleeding, the report said."
Learn about the medicines that you take and their possible side effects. Remember that medicines that are strong enough to cure you can also be strong enough to hurt you if they aren't used correctly. For more information about medication, see the Alzheimer's Disease International information sheet on Drugs

Progression of the disease

Progression of the disease

You and the person with dementia will probably want some idea of what to expect in the future. It is not always easy to predict the progression of dementia. How the person will change will depend on many different factors:

  • We are all individuals with our own unique personalities and life experiences. Each individual is likely to cope differently when given a diagnosis of dementia.
  • Each type of dementia has a different pattern of progression. For example, people with vascular dementia may find that their symptoms remain steady for a while and then suddenly decline. In people with Alzheimer’s disease the decline may be steadier and for some people there may be a period when their condition seems to stay the same.
  • There may be variations even in people with the same type of dementia. This may depend on the areas of the brain affected. For example, in cases of vascular dementia the position of small strokes in the brain will lead to different symptoms.
  • The person’s physical health may play a large role in how the person changes over time. A chest infection or a fall may lead to a sudden deterioration, for example.
  • People with dementia may also respond to changes in their physical circumstances. They may be affected if they are moved to somewhere unfamiliar and their routine is disrupted.
  • The attitude and mood of the carer may also affect the person with dementia. The person may be upset by noise and disruption, or may become withdrawn when in a stressful situation with lots of unfamiliar people.

People with dementia's abilities may also fluctuate from day to day, or even within the same day. Although problems will probably become more severe, even this is not certain.

Not everyone will go through every ‘level’, and some people will show problems not mentioned here. This is simply a guide to the kind of difficulties that may be experienced: A broad outline of the progression of symptoms

Causes of Alzheimer's

Causes of Alzheimer's

The exact cause of Alzheimer’s disease and most of the other dementias has yet to be established. Many theories have been put forward.

Like most medical disorders, Alzheimer’s disease is probably caused by a combination of genetic factors and environmental influences. Most attention is currently being given to the effects of the build-up of amyloid protein in the brain. What causes this excess of amyloid is not clear. The genes responsible for amyloid production have been identified and studied extensively.

There are a few families where there is a very clear inheritance of the disease from one generation to the next. These are often families where the disease appears relatively early in life. There is valuable info about this form of Alzheimer's at http://www.fightdementia.org.au/services/younger-onset-dementia.aspx.

In the vast majority of cases, however, the effect of inheritance is small, such that if a parent or other relative has Alzheimer’s disease, your own chances of developing the disease are only a little higher than if there were no cases of Alzheimer’s disease in the immediate family.

The environmental factors that may contribute to the onset of Alzheimer’s have yet to be identified. A few years ago there were concerns that exposure to aluminium might cause Alzheimer’s disease, but these fears have largely been discounted.

Other risk factors are also being studied. Having had a head injury appears to be associated with increased risk. There are suggestions that women who have been prescribed hormone therapy and people taking certain types of anti-inflammatory medication may have reduced risk.

Vascular dementia

We know a little more about the causes of vascular dementia. Vascular dementia occurs when the cells in the brain are deprived of oxygen from an efficient blood supply. If there is a blockage in the vascular system, or if it is diseased, blood is prevented from reaching the brain. People with high blood pressure, high blood fats and diabetes are at greater risk of vascular disease.

Avoiding being overweight, through a combination of healthy eating and exercise, stopping smoking and avoiding excessive alcohol intake can help prevent vascular disease.

At the pharmacy

At the pharmacy

  • make sure you can read and understand the medicine name and the directions on the container. If the label is hard to read, ask your pharmacist to use larger type. If you are unable to read, ask the pharmacist to tell you how to take the medicine.
  • check that you can open and close the container before you leave the pharmacy. If you cannot, let the pharmacist know.
  • check the label on your medicine before leaving the pharmacy to make sure that it is for the correct person and with the correct directions prescribed by the doctor or sister. If not, tell the pharmacist.

 

At home

At home

Do:

  • keep a daily checklist of all the medicines you take.
  • include both prescription and OTC medicines.
  • note the name of each medicine, the doctor who prescribed it, the amount you take, and the times of day you take it. Keep a copy in your medicine cabinet and one in your wallet or diary.
  • read and save any written information that comes with the medicine. Check the label on your medicine before taking it to make sure that it is for you or for the person to whom you are giving it.
  • take medicine in the exact prescribed amount and at the right time. Medicines will be more effective if they are taken exactly as prescribed by the doctor, in the correct dose and monitored regularly for side-effects.
  • check the expiry dates on the medicines and throw away medicine that has expired.
  • speak to the doctor or clinic if you have any problems with your medicines or if you are worried that the medicine might not be right for you. It may be necessary to change your medicine to another one.

Do not

  • take medicines prescribed for another person or give yours to someone else.
  • stop taking medication that has been prescribed for you unless your doctor says it's okay — even if you are feeling better.
  • mix alcohol and medicine unless your doctor says it's okay. Some medicines may not work well or may make you sick if taken with alcohol.
  • expect immediate results. Benefits may take several weeks to appear, particularly with anti-depressants.
  • take the person with dementia to the clinic as well as his or her own doctor and/or psychiatrist. This can result in “polyscripting”, with extensive side effects and even death.

 

At the doctor's

At the doctor's

  • ensure that the medication is reviewed every two months, as it should be for elderly persons.
  • take all medications to clinic and hospital appointments.
  • tell/remind your doctor if other medications or treatments are being taken. Be aware if person is taking alternative treatments e.g. purgatives (make you vomit).
  • tell the doctor/clinic if the medication is not being taken and the reasons why.
  • go over your medicine record with the doctor or nurse at every visit and whenever your doctor prescribes new medicine. Your doctor may have new information about your medicines that might be important to you.
  • always tell your doctor or nurse about past problems you have had with medicines, such as rashes, indigestion, dizziness or not feeling hungry.
  • always ask your doctor or nurse about the right way to take any medicine before you start to use it.
  • ask the doctor why the medicine is being prescribed.
  • ask the doctor what side-effects to expect as they may occur early or late in the course of treatment. All medicines have side-effects which may make the symptoms/behaviour worse. Side-effects are usually related to the dose. The doctor will usually 'start low and go slow', gradually increasing the dose until the desired effects are achieved.
  • ask these questions (and write down the answers) before leaving your doctor's office:
    - What is the name of the medicine and why am I taking it?
    - What is the name of the condition this medicine will treat?
    - How does this medicine work?
    - How often should I take it?
    - How long will it take to work?
    - How will I know if this medicine is working?
    - How can I expect to feel once I start taking this medicine?
    - When should I take it? As needed? Before, with or between meals? At bedtime?
    - If I forget to take it, what should I do?
    - What side-effects might I expect? Should I report them?
    - How long will I have to take it?
    - Can this medicine be taken with the other medicines that I am taking now?
    - If I don't take medicine, is there anything else that would work as well?

 

Names of medicines

Names of medicines

All medicines have at least two names - a generic name that identifies the substance and a proprietary (trade) name that may vary, depending on the manufacturer.

Drugs can be classified in line with the symptoms that they treat. The links below will describe to you the drugs that are used for the symptoms listed as well as the side-effects commonly experienced:

  • Agitation, aggression and psychotic symptoms
  • Depression
  • Anxiety
  • Sleep disturbance
  • Anti-dementia drugs
  • Anti-convulsant drugs

What to avoid

What to avoid

Before any medicines are prescribed for dementia, existing health conditions and medications need to be taken into consideration.

Whenever possible, the person should be helped to lead an active life, with interesting and stimulating daily activities. By minimising distress and agitation it is often possible to avoid the use of medicines altogether.

If, after a full assessment, it is decided that medication is necessary, it is important to remember that:

  • Medication/sedation of the person with dementia must be seen as a last resort, because of the many possible side effects. BEHAVIOUR ASSESSMENT AND MANAGEMENT WITHOUT MEDICINES MUST BE THE FIRST LINE OF INTERVENTION.
  • Some of the drugs taken to control behavioural symptoms can be dangerous if accidentally taken in large quantities. Make sure medicines are kept in a safe place.
  • NEVER, EVER ASSUME that any changes/deterioration in a person with dementia are due to the dementia or old age. It can be side-effects, which can be rectified, or an illness that can be treated. ALWAYS mention any changes or concerns to the clinic/doctor.
  • A medicine that has worked well does not always continue to be effective. Dementia is a degenerative condition. The chemistry and structure of the brain will change during the course of the illness.
  • If the person also has Parkinson’s disease, many of the medicines used for people with dementia may not be used with the Parkinson’s medication.
  • Where epilepsy is being treated with Carbamazepine (Tegretol), the Carbamazepine can affect the levels of the antipsychotics in Risperdal.
  • Etomine (Clothiapine) given to a person with dementia will increase both the confusion and agitation and Oxazepam (Serepax) will increase the disorientation and confusion.
  • If symptoms are difficult to control, the doctor may refer you to a specialist for further advice.
  • Some medicines need to be taken regularly to have an effect - for example, antidepressants. Other medicines such as hypnotics or anxiety-relieving medicines may be more effective when taken on an 'as needed' basis. This should only be done after discussion with the doctor.
  • Do not expect immediate results. Benefits may take several weeks to appear, particularly with antidepressants, which can take two to three weeks to have an effect.

Medicines for behavioural symptoms

Medicines for behavioural symptoms

People with dementia may at some point in their illness develop symptoms such as depression, restlessness, aggressive behaviour and psychosis (delusions and hallucinations).

The person is not just being difficult. He or she is trying to tell you something but is unable to, because of problems with communication. An example is if the person becomes physically or verbally aggressive, s/he may be expressing anger or frustration but cannot tell you. It is important to try to understand the reasons for this behaviour and try and prevent it from happening again.

It may, however, be necessary to have medication prescribed if the behaviour is really out of control and is a problem for the person with dementia and those living with that person.

If on medication, the person must be evaluated at least every two months, as the medication should not be prescribed indefinitely.

 

Agitation, aggression and psychotic symptoms

Agitation, aggression and psychotic symptoms

Drugs used in treatment
Major tranquillisers (also known as neuroleptics or antipsychotics) are medicines that were originally developed to treat younger people with schizophrenia.

They are frequently prescribed to people with dementia for symptoms including agitation, delusions (disturbed thoughts and false beliefs), hallucinations (seeing and hearing things that aren't there), sleep disturbance and aggression. Commonly used medicines include thioridazine, haloperidol and risperidone.

Side-effects
Side-effects include excessive sedation, dizziness, unsteadiness and Parkinsonism, when the symptoms resemble those of Parkinson's disease (mask-like face, shakiness, slowness and stiffness of the limbs). Tranquillisers may be dangerous for those with dementia with Lewy bodies or Parkinson's disease.

A new generation of major tranquillisers may be less prone to produce troublesome side-effects and these include risperidone.

Whichever medicine is used, treatment with major tranquillisers should be reviewed regularly and the dose reduced or the medicine withdrawn if side-effects become unacceptable.

Excessive sedation with major tranquillisers may reduce symptoms such as restlessness and aggression, but at the same time, reduce mobility and worsen confusion.

Anticonvulsant drugs such as sodium valproate and carbamazepine (Tegretol) are sometimes also used to reduce aggression and agitation, as is the antidepressant drug trazodone.

 

Sleep disturbance

Sleep disturbance

Drugs for treating sleep disturbance
Sleep disturbance, and in particular persistent wakefulness and night-time restlessness of the person with dementia, can be very disturbing for carers. Many of the drugs commonly prescribed for people with dementia can cause excessive sedation during the day, leading to an inability to sleep at night.

Increasing stimulation during the day can reduce the need for sleep-inducing medication (hypnotics) at night. Hypnotics are generally more helpful in getting people off to sleep at bedtime than they are at keeping people asleep throughout the whole of the night. They are usually taken 30-60 minutes before going to bed.

Chlormethiazole is generally well tolerated by elderly people, although some cannot take it because it produces an unpleasant itching sensation in the nose. Benzodiazepines (see section on drugs for treating anxiety) such as temazepam are frequently prescribed. Thioridazine is also sometimes used for night-time sedation (see section on drugs for treating agitation). Examples are flurazepam (Dalmane) and temazepam (Temazepam).

Side-effects

If excessive sedation is given at bedtime, the person may be unable to wake to go to the toilet and incontinence may occur, sometimes for the first time. If the person does wake through the night despite sedation, increased confusion and unsteadiness may occur.

Hypnotics are best used only when the carer and person with dementia feel that a good night's sleep is necessary for either or both of them. The doctor should regularly review the use of such drugs.

 

Depression

Depression

Drugs for treating depression
Symptoms of depression are very common in dementia. In the early stages they are usually a reaction to the person's awareness of the diagnosis. In the later stages of the illness, depression may also be the result of reduced chemical transmitter function in the brain. Both types of depression can be treated with antidepressants, but make sure that this is done with the minimum of side-effects.

Antidepressants may be helpful in improving persistently low mood and also in controlling the irritability and rapid mood swings that often occur in dementia and that are also seen after a stroke.

The doctor will usually prescribe antidepressants for a period of at least six months. For them to be effective, it is important that they are taken regularly, without missing any doses.

Improvement in mood typically takes two to three weeks or more to occur, whereas side-effects may appear within a few days of starting treatment.

Side-effects

Tricyclic antidepressants such as amitriptyline, imipramine or dothiepin, which are commonly used to treat depression in younger people, are likely to increase confusion in someone with dementia. They might also produce dry mouth, blurred vision, constipation, difficulty in urination (especially in men) and dizziness on standing, which may lead to falls and injuries.


Newer antidepressants are preferable as first line treatments of depression in dementia.

Drugs such as fluoxetine, paroxetine, fluvoxamine, sertraline and citalopram (known as the selective serotonin re-uptake inhibitors) do not have the side-effects of tricyclics and are well tolerated by elderly people. They can produce headaches and nausea, especially in the first week or two of treatment.

 

Anxiety

Anxiety

Drugs for treating anxiety
Anxiety states, accompanied by panic attacks and tearfulness, may lead to demands for constant company and reassurance. Short periods of anxiety, for example in response to a stressful event, may be helped by a group of drugs known as benzodiazepines. Continuous treatment in excess of two to four weeks is not advisable because dependency can occur, making it difficult to stop the medication without withdrawal symptoms.

Side-effects
There are many different benzodiazepines, some with a short duration of action such as lorazepam and oxazepam, and some with longer action such as chlordiazepoxide and diazepam. All of these drugs may cause excessive sedation, unsteadiness, a tendency to fall, and they may worsen confusion and memory problems that are already present.

Major tranquillisers (see above) are often used for severe or persistent anxiety. If taken for long periods, these drugs can produce a side-effect called tardive dyskinesia, which is recognised by persistent involuntary chewing movements and facial grimacing. This may be irreversible, but is more likely to disappear if it is recognised early and the medication causing the problem is stopped.

 

Anti-dementia drugs

Anti-dementia drugs

The new generation of anticholinesterase drugs was originally developed to improve memory and the ability to carry out day-to-day living activities. Recent evidence suggests that they also have beneficial effects on behaviour, especially lack of drive, mood and confidence, delusions and hallucinations.

Taking these medications may therefore reduce the need for other medications. In higher doses, however, anticholinesterase drugs may gradually increase agitation and produce insomnia with nightmares. Examples are donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl).

Another type of drug, an NMDA receptor antagonist known as memantine (Ebixa), is generally well tolerated and unlikely to cause gastro-intestinal tract side-effects.

 

Anti-convulsant drugs

Anti-convulsant drugs

  • Sodium valproate (Epilim)
  • Carbamazepine (Tegretol)

 

See also 'Understanding what is happening to the person' in the section 'Giving care'.