1. ORGANIC DEMENTIA - A CROWING CARE PROBLEM

(1) Background facts
Sweden has a population of 8.5 million inhabitants of which 18% are persons over 65 years of age. By 2025 we expect the same part of the population to have risen to 21%. Since 1950 the number of persons over 80 years has increased 3.5 times. The number of persons over 80 is expected to increase by 10,000-12,000 persons each year up to 2000. The very old, 85 years and older, are a group of persons that is increasing in all industrial countries. In Sweden they made up about 0.8% of the population in 1990. According to the statistical prognosis they will in-crease to about 2.5% in 2010. Since the number of aged is increasing in our society, so will the number of people suffering from dementia. Studies in Sweden show that more than 5% of the population above 65 years suffer from organic dementia. The number of afflicted increases with advancing years. Among persons over 80 years it is estimated that one in five is afflicted. Almost every second person over 95 is thought to be suffering from dementia.
Dementia is a universal problem. In Japan an epidemiological study of organic dementia was made by K. Hasegawa. On the basis of inter-views made in a Tokyo residential district with a population of 250,000, it was found that a total of 2.4% of the study group were afflicted with some form of dementia. According to the study the total figure for dementia in Japan is comparable to that of other countries. These facts constitute but one of a number of reasons for continuing the intensive research on the diseases of dementia, especially since the proportion of older-aged is on the increase. While waiting for a targeted therapy with which to counter the illness, the care aspect grows increasingly important. Through intensified research and a fuller understanding of those afflicted, alternative forms of care must be developed which provide the patients with an environment that is as home-like and stimulating as possible. One example of a form of nursing which satisfies these high ambitions is Baltzargarden at Motala in Sweden, a group-living approach showing one way in which caring for the demented could be performed.

2. ORGANIC DEMENTIA - A DEFINITION
Today, the term senile dementia is used widely. It is usually defined as an acquired condition which leads to reduced intellectual performance and impaired memory function with subsequent social consequences. It is an condition brought about by disease or by brain damage and as such is referred to as organic dementia. Organic dementia is a long-term condition which ought to be looked upon as a malignant disease. It can have many causes. The most common form is Alzheimer's disease, a degenerative brain disease which causes pathological changes and subsequent brain cell death and atrophy of the brain tissue. Other common causes of dementia are diseases which affect the blood vessels of the brain and the supply of blood. Blood-clots and haemorrhages cause damage to the brain tissue. which leads to what we today call multi-infarct dementia.
It is estimated in Sweden that about 50% of those afflicted with dementia suffer from Alzheimer's disease, and about 20% are suffering from multi-infarct dementia. Furthermore it is possible to have a combination of Alzheimer's disease and multi-infarct dementia. On the basis of these figures we can conclude that Alzheimer dementia and multi-infarct dementia together make up the majority of brain-damage related to dementia. The diagnosis of the underlying causes of dementia is important. Certain patients could behave as if they were senile although they have no brain damage at all, a condition named pseudo-dementia. For these persons the actual cause may instead be a depression, a thyroid deficiency, incorrect medication or something else. For this reason it is vital that the condition is fully investigated and that a correct diagnosis is made. Such a procedure comprises an anamnesis report (both physical and psychiatric), a laboratory analysis and psychological testing - often supplemented with an EEG examin ation. Computer tomography can also be of great value in determining multi-infarct dementia.
Each patient with a suspected dementia condition should be given a thorough examination. This should be done as a team-work to establish the diagnosis and thereby also a prognosis. The psychological investigation is an important guide where special tests can diagnose dementia-related disorders at an early stage.
We do not know the reason for Alzheimer's disease. We know that it is a degenerative brain disorder, i.e., a disease which causes cell mortality and atrophy of brain tissue. The development of Alzheimer's disease is prolonged and frequently extends over a period of 10-15 years. Initially, the patients complain of poor memory, tiredness and worry. The patient has speech difficulties, cannot find words and also has difficulties in understanding what is being said. The patient does not recognize a well-known environment such as his or her own home, and also bas practical difficulties in performing everyday tasks. In a later stage of the disease the patient becomes increasingly forgetful, disoriented, and lacks ability to recognize both people and objects. Even simple figures will present difficulties for the patient to copy, and handwriting often becomes disjointed and difficult to read.
Despite these severe handicaps the patient may retain a well-preserved personality and social behaviour, which is an effect of the dementia still not having affected the frontal lobes but only the temporal. Parietal and occipital lobes. In the final stage, the patient becomes increasingly passive, in need of assistance and suffers pronounced stiffness of the muscles. In this advanced stage of the disease, complications will also arise in the form of infections, fractures and incontinence.
The nerve cells of the brain have a language which is transmitted by means of "signal substances" or neurotransmittors. These are present in very large numbers. In Alzheimer's disease a typical characteristic appears to be a deficiency of acetylcholin and in treating the disorder a search is being made for a drug which would increase the acetylcholin concentration in the brain. In this context, it is hoped that the preparation Tetrahydroaminoacredin (THA) will be useful. Intensive research is on going also on other methods of treatment, not least in Sweden.
As regards Alzheimer's disease or other forms of organic dementia. the only thing we know with certainty is that physical training and stimulation can noticeably improve and reduce the level of dementia, just as well as a lack of stimulation can rapidly cause a deteriorated condition. Group-living - such as is found at Baltzargarden - is an approach where healthy areas of the brain cells remaining even in people suffering from dementia are stimulated and activated on a 24-hour basis.
Establishment of a diagnosis is important so that pseudo-dementia can be excluded. The patient in such cases has a normal, healthy brain but can still behave like a patient with organic dementia, perhaps depending on a deep depression or a somatic disease. Also deafness, reduced vision, isolation or a monotonous and boring environment may produce a picture similar to dementia. However, the brain is normal - thus the name pseudo- dementia - and is a condition which can be treated and where the patient will recover when the reason has been found and treated.
Modern brain research today has been able to map the brain's geography. If we are to understand the symptoms of dementia disorders it is important to know where in the brain the damage is located. It is important to know the damage pattern of the disease. In dementia, severely damaged areas are frequently the lower parts of the brain, where the memory is located. Other parts to suffer in, e.g.. Alzheimer's disease, are the temporal lobe and the parietal and occipital lobes, all of which are important for speech and orientation. Personality and social behaviour are located in the frontal lobes, which are frequently attacked late in Alzheimer's disease. Motility and sensitivity are located in the central parts of the brain. Nerve cells for visual impressions are located in the occipital lobe.
Depending on where the disease bas affected different parts of the brain, there will also be different symptoms. The pattern of damage will be the key to understanding the pattern of symptoms but also the key to knowledge of which parts are healthy and possible to stimulate in the rehabilitation. In cases of Alzheimer's dementia the temporal, parietal and occipital lobes are mainly attacked. It should be noted that the frontal lobes often remain healthy initially, which implies that the patient's personality is retained longer.
In multi-infarct dementia any area may be attacked at any time de-pending on where the damage is located. If, for example, the damage is located in an area where motility is regulated then symptoms of paralysis will result. If the damage is in an area where speech is controlled, then there will be speech or language difficulties.
The therapy at Baltzargarden is based partly on knowledge of modern memory research and partly on - using reality as a basis - application of a 24-hour stimulation of the healthy, still functioning, parts of the brain in a loving and good environment. All patients have received a diagnosis and have been investigated both with a medical examination and with psychometric tests and radiology.

3. THE PROBLEM OF NON-RECOGNITION
It is not easy to lay a table when you don't recognize spoons, forks and knives, and when you don't know what they are to be used for.
When anxiety reaches a maximum you put on all the clothes you own and say that you want to go home. For you, home is the place you lived in fifty years ago. This is when experienced staff is necessary to quieten and help the patient.
Repeated movements, without meaning, are one of many symptoms.
To pay at the shop with banknotes is something you have done throughout your life. When you don't recognize banknotes and can't distinguish them from paper napkins, then your purse can become filled with worthless paper.
Even if you don't realize that lumps of sugar should be put in your coffee and not on the table, then you might imitate your surroundings, and in that way start eating. For the person suffering from dementia, who doesn't recognize what food is, starvation may be very close unless support is obtained through imitating what is going on in his or her surroundings. In this way, eating together with other people will be a therapeutic feature of the care.
One way of psychometrically testing the condition of the person suffering from dementia is by means of a Mini-Mental State Examination (MMSE). When the instruction given or what is said is not understood,

The MMSE Screening Test

then it is impossible to do what is asked of you. MMSE is a screening method which can provide valuable information on the state of the patient.
Details of the MMSE screening test have been published in Journal of Psychiatric Research 1975 12 189-198. "Mini-Mental-State" (Folstein et al) and in Psychological Medicine, 1982, 12, 397-408, "Limits of the MMSE..." (Anthony, J.C. et al).
The screening test has its limits. It is however found to be quick. easy to use and acceptable to patients and testers. It indicates that the score of 20 or less is essentially only found in patients with, e,g. dementia, delerium and schizophrenia, but not in normal elderly people. The MMSE alone cannot ever be sufficient for a diagnosis of dementia, but can be considered as grounds for further medical evaluation.
Modern memory research has revealed that we have both episodic, semantic and procedural memories. In dementia there is a rapid loss of the ability to orientate oneself in relation to time, space and person. This removes the possibility to remember important episodes or the irregular semantic memory. On the other hand, the procedural memory often re-mains for a long period, e.g., the ability to swim, walk or dance. A quiet waltz together with a close relative is a fine way of feeling happiness and of activating the function of the brain cells. The use of music is also a way of activating forgotten words and the "dumb" will start to sing -only once again to lose the ability to speak a few minutes later.
To get dressed will be impossible when you cannot see the difference between a dress and a pair of shoes.
Therefore, in all care of demented patients it is of the utmost importance that the staff are aware of what the patient can or cannot achieve. The good moments together with the patients might perhaps be to eat together, where the patient can imitate the other people, to go for a walk together so that the patient will return happily and safely, to listen to music together, to watch the television.
Animals are important for many people. The contact with a dog will awake old warm feelings of tenderness and affection and may also be a way of reawakening old memories.
The hygiene problem is difficult. Removal of, for example, false teeth for cleaning may lead to anger and aggression and will be very trying for both the patient as well as the staff and relatives.
The main rules in care of dementia patients are:
･ Avoid stress or stressfull situations. Allow the patient to follow his or her own day-to-day rhythm.
･ Give the patient support in situations which he or she doesn't recognize or doesn't understand.
･ Over-stimulation is just as dangerous as under-stimulation. An outing, for example, should be short and in good weather. A tired patient will rapidly develop aggravated symptoms.
･ There should never be too many people gathered around the patient. Continuity among the staff is important and a condition for the patient to feel secure and for the staff to learn the needs of the patient.

When treating demented patients in group-living it is important to note both what the patient can do and cannot do. If the brain damage is located in the motor area of the brain, the patient is paralysed and we cannot expect the patient to be able to walk. If the brain damage is in such parts of the brain where oral communication is regulated, then the patient cannot understand what we are saying since the brain cells here are dead. If the damage is in an area which controls our recognition ability or our orientation ability, then we have lost these abilities and perhaps are unable to recognize even our own home.
Memory disorders, language disorders and disorientation with regard to time, space and person are expressions of the extent of the disease in the brain. Together with relatives or staff with individual knowledge of the patient, it is still possible for demented patients to function reasonably well. A condition is then that the patient receives support and understanding from his or her surroundings. Group-living such as found at Baltzargarden cannot cure the disease but may well alleviate the dementia symptoms. Responsible staff must have both empathy and knowledge in order to be able to cope with the difficult care situations that arise when treating dementia cases. Correct diagnosis, the spreading of knowledge, and differentiated individual care adapted to the needs of the demented patient are important factors for the future.

4. CARING FOR PATIENTS WITH DEMENTIA AT BALTZARGARDEN, MOTALA, SWEDEN
The objective for all care is a good therapeutic environment. If you want to organize training and treatment of an old-age demented patient in the right way, the care has to be strictly individualised. The training is entirely geared to analysing the patient's remaining resources. In exploiting these, and in encouraging the patient continually to try to perform all of the daily tasks he is capable of doing in a tender loving way, both staff and patients could have an enjoyable time together.
The project - the group-living at Baltzargarden - began in 1985 and was based upon the hypothesis that the patients could be cared for in a much better way in small groups and home-like surroundings instead of large impersonal institutions with many patients and social contacts. In a small group of no more than 6-8 persons and in an environment which is as home-like and secure as possible even the demented patient could find life-quality.
The project is based on three theoretical research lines:
1. Resource stimulation by a modified form of Reality Orientation. In short, the method entails using reality as a basis for stimulating and activating those functions in the patient which are still vital.
2. Using the environment not only mentally but also physically as a re-source and help. That means a home-like and pleasant environment where the patent could have a chance of recognizing items around him or her, combined with "tender loving care".
3. Modern knowledge of memory functions and what the locations of the brain damage mean to your behaviour. We know for example that Alzheimer's disease initially leaves early memories and experiences relatively intact. The point is making use of this knowledge at every stage of the therapy.

(1) The house
Baltzargarden is a house which is owned by the County Council of Ostergotland and belongs to the Department of Geriatrics and Long-term Care in Motala. It comprises a total of ten moms (of which seven are single rooms), a common sitting room, a dining room and a kitchen. The house has a large garden with mature fruit trees. Furthermore, the furnishings contribute greatly to creating a pleasant environment and have no traces of similarity with a formal institution.

(2) The staff
The staff comprises fourteen persons who share ten full-time positions. Minimum qualification is staff nurse or mental orderly. Matron (a trained nurse), and two of the staff nurses work full-time, whilst the others are pan-timers.

(3) The patients
Seven in-patients are trained around the clock. The objective is to strengthen the patient's self-esteem in a good and friendly mental environment, where kindness, encouragement and praise are important ingredients. This will be accomplished by talking about things or doing things together which are of interest to the demented patient, things which he or she can still remember or be helped to remember.
The main thing in nursing and communicating with persons with organic dementia is to strengthen those functions which are still intact and to concentrate on situations which they can handle.

(4) The relatives
Relatives of the patients at Baltzargarden play a very important role.
To be a relative of a patient who is suffering from geriatric dementia is difficult. Being a wife or a husband is difficult, as well as being a son or a daughter. Everyone who has been through it knows that one's feeling are tossed between despair, shame, guilt, aggression, hate and tenderness. At Baltzargirden a major task for the staff is to support the relatives and teach them to cope with all the different problems concerning their near and dear.

As early as in the autumn 1985, when Baltzargarden had been in operation for six months, a preliminary evaluation of the project was published by the Department of Health and Social Welfare under the heading of "A report from Baltzargarden in Motala", PM 161/87. In 1988 the publication "At home at Baltzargarden" was published. This book is an account of how care is administered within a collective group-living for demented to a number of aged men and women all diagnosed as demented. One of the aims of the book has been to inform in an easy way how to handle difficult questions concerning the severely demented.
The report "At home at Baltzargarden" will be available in Japanese at the conference.
The group-living of Baltzargarden is a model of how group-livings could be performed. This is especially important today when all communities in Sweden are obliged by law to build up group-livings like Baltzargarden, caring for the demented in the way that Baltzargarden has shown. From January 1st, 1992, caring for the aged and demented has been moved from the responsibility of the County Councils to the responsibility of the communities in Sweden. Our 284 communities (communes) are expected to build group-livings for about 30,000-40.000 persons. Caring for the demented will be the great problem of tomorrow.
All this might seem simple enough at a first glance, treacherously simple, but it requires knowledge of theory and of practice. Knowledge of the fact that dementia is a terminal disease, where diagnosis needs to be made carefully and is not without problems, particularly with respects to pseudo-dementia, e.g. depression. Dementia and depression not only can have similar manifestations, but can also occur together. Knowledge of the importance of a positive approach, environmental stimulation and mental activation even to the demented elderly. Attitudes towards them in Western society have often been discriminatory, rejecting and negative. It is important to acknowledge the fact that understimulation probably is a clinically important part of the intellectual and emotional deterioration in many patients with dementia. We think today that mental stimulation cannot alter the course of the illness, but can make the demented patient more cooperative, the staff more interested and motivated and might show the relatives a way in which help can be given.