The Alzheimer patient in the family context: how to help the family to cope

Summary

Alzheimer’s disease is the commonest type of dementia. At the present time, there are no medical or surgical measures for curing it or for preventing its appearance — and there will be none in the near future.

During the years that elapse between the onset of the disease and the death of the patient (average 8.1 years), a ‘continuum of care’ responding to specific criteria — adaptation to the patient’s condition, flexibility in relation to the course of the disease, easy and free access to health services — must be provided.

Apart from the purely medical aspects, this continuum of care represents an extremely heavy social burden. This is borne essentially by two structures:

• the society, or the nation, as a whole, which bears the economic burden;

• the family, in whose bosom, traditionally, the person with this disease is provided with care for as long as possible.

Since the 1980s a movement, operating at a level between the above two structures and composed of people who do not find in the existing institutions the help or the type of help that they are seeking, has been playing a leading role in providing a continuum of care. Based on the principle of self-help, this movement has 3 principal aims: (1) to increase the awareness of and to educate the public; (2) to provide the patients and their families with material, psychological and social help; and (3) to incite the political and health authorities to find socio-medical solutions.

Before looking at these 3 aims in more detail, it is important to know why the social aspects of the disease have been arousing such great interest in the last few years.