A major part of research is currently directed at trying to establish the causes of the disease, although at present a great deal still remains to be discovered in this respect.
It is known that the disease is more common at advanced ages, but the factors that set off the characteristics changes that occur in the brain tissue of sufferers are unknown. It is known that these cerebral changes are related to aging, but also that they are not part of the normal aging process. These changes do in some cases occur at a relatively early age.
Although it is believed that genetics may play a part, genetic abnormality is rarely the cause of the disease. The general opinion is that genes only contribute to increasing the likelihood that a person will suffer from the disease. It seems, at least in some cases, that there are environmental factors that help to trigger the disease. What is clear is that Alzheimer’s is not infectious and that it is not caused by the brain being under or over used. Although the disease does sometimes appear after a period of stress or anxiety, these emotional states are not thought to be the source. Traumatisms or operations are not believed to trigger it either. It has sometimes been said that diet or some hormonal deficiencies may contribute to its development, but most specialists do not accept this proposal, just as the idea is rejected that aluminium in the diet may be related.
So the main cause is still not known today. We do know that it involves a disease that is dependent on age, i.e. it is more common the older one is - and that many factors exist that influence its genesis.
Not enough is known about the disease to allow us to recommend any types of precautions.
The figure amounts to more than 600,000 patients diagnosed, although it is estimated that around 800,000 people actually suffer from it.
There is no inclination for one sex to suffer from it more than another. If more female patients appear in statistics, this is only because women live longer than men and they are therefore more numerous.
It is known that in some rare cases of the disease it tends to be present in people younger than normal, being genetically transmitted from one generation to another. The probability in these cases of close family members developing the disease-brothers, children- is 50%.
Most cases of Alzheimer’s however are not through genetic transmission. If a member of the family suffers the non genetic type of the disease, the risk for their family members is approximately three times higher than the risk for a person of the same age with no family history of the disease. Genes are believed to contribute to the development of the disease in these cases, but not to directly cause it.
Not at all.
Many elderly people realize their memory is not as good as it used to be. They have problems for example in remembering the names of people they know, what they were going to buy or what they were going to do. This does not mean they are beginning to develop Alzheimer’s disease. A person who is often forgetful can still remember details related to the subject they have forgotten. They may therefore forget the name of their neighbour, but know that the person they are talking about is their neighbour. Alzheimer’s disease patients do not just forget details, but the whole context. They may even have problems such as changes in behaviour and loss of the ability to carry out daily living activities.
One of the changes that often appear in the initial states of the disease is that a person seems different to usual. The person seems less able, less involved and less adaptable. They lose interest in their hobbies and interests; they show a loss of concentration; they are unable to take decisions and avoid any types of responsibility. Strange behaviour can also be noted, like getting ready to go to work years after having retired; or disorientation and strange changes of mood may be appreciated, such as irritability and suspicion, which may be due to the person realizing that something is not right but that they are unable to work out where the problem lies.
All of these changes are hard to determine early on. They are usually identified later on, “looking back” and trying to remember what the first signs of the disease were.
It affects everyone differently. Although the disease tends to follow the same pattern- a progressive impairment of cognitive and functional capacities over the years-its impact will depend on the initial state of the patient. Personality, physical conditions and social situations are important factors.
Some patients become increasingly difficult and it is hard to live with tem, while others become gentler and friendlier. Some people with Alzheimer’s disease do not have any added health problems, whereas others have disabilities that can make them much more difficult to look after. Some patients have a comfortable social situation, whereas others have to face family and financial problems.
The course of the disease will not be exactly the same in any two patients. It may develop more quickly in some than others, and nobody is going to experience all the signs and symptoms listed here.
It is important to point out that the disease progresses gradually and that it is very rare for it to coincide exactly with each of the three states described on this page. It may nevertheless be helpful to look at typical signs and symptoms in the context of these three states, since it can be useful for caregivers in order to warn them of the problems that may appear and to make plans about future needs.
The initial state of the disease is often ignored, usually being interpreted as “old age” or a normal part of the aging process. Since the onset of the disease is gradual, it is difficult to exactly identify its onset. At this time, the patient may:
As the disease gradually progresses, problems become more evident. People with Alzheimer’s have problems in their daily living and:
This stage is characterised by total dependency and inactivity. Memory disorders are very serious and the physical deterioration in the disease becomes more evident. The patient may:
Because it is possible in this way to rule out the possibility that the symptoms have a different cause that can be treated more easily. Because it allows family members, friends and, if it is possible, the patients themselves to make future plans. Because the patient can be given more suitable care and treatment, especially taking into account that current pharmacological treatments do not cure, but rather slow the development of the disease.
The only totally definite diagnostic means is the brain biopsy. Yet, on rare occasions, either by other techniques, such as those derived from neuroimaging (brain CT, cerebral magnetic resonance, Spect, Pet), together with an electrocephalogram, blood tests and especially, the medical interview, a very approximate diagnosis can be reached.
Although it depends on various aspects, especially care, it can be said that the time of survival will be around fifteen years.
No pharmacological treatment currently exists for the disease. There are however pharmacological and non-pharmacological treatments that reduce the speed of development of the disease if the condition is still one of early onset.
A patient with this type of affliction may be at home until the last day of their existence; there is no need to take them away from home. Everything depends on them having the necessary care: health care, human care and environmental care to ensure they are well looked after.
Anyone who knows the full extent of the disease and also its limits. An essential professional will be their family doctor, who will have had permanent knowledge of their health problems. Specialists such as occupational therapists, physiotherapists, psychologists, nurses or psychogeriatric assistants will be very useful in daily care.
This is the most terrifying question and also the wrong question. When one starts to think about “giving up”, the work of looking after a family member is being set in a context of success or failure. So, the question we are really asking is: “When will I know if I have failed as a caregiver?” But admission into a residential centre is not a question of giving up or failing. The question that a carer should ask in all stages is:”When should I seek help to look after them?” The answer is then: “Soon and frequently”. Caring for a sick family member can be a very long job, and it is necessary to distinguish between what one can do well and when you need help or a rest.
As the disease advances and the situation becomes more difficult, more resources are needed to achieve the objectives set out in caring for the family member. Several different choices exist here: day centres, sheltered housing, residential centres and home help.
So the time may come when the main caregiver, together with their family and the doctor may decide that a centre giving services 24 hours a day is best suited to the needs of all those involved. In this case the caregiver continues to perform their function, but other people provide the physical care.
The decision to send a person with dementia to a more protective environment is never easy. For the family caregiver it is very hard and painful to take this decision, but the family situation is sometimes so complicated that they have no other alternative. It is always necessary to think about providing the patient with the best quality care that they need.
© Instituto de Mayores y Servicios Sociales (Imserso) 2009
CRE Alzheimer de Salamanca