Alzheimer’s Disease and related disorders, because of its lengthy and progressive nature, can be the cause of a distressing, long-lasting and often exhausting burden on the families of patients. These families may benefit from information about the disease and its complications, support and education in individual or group sessions. Doctors and other health professionals should therefore be able to inform and advise families, who in their turn, play a vital role in optimizing the care of the patient. Better understanding of the disease, it’s evolution and it’s complications, as well as accepting the disease with improved coping strategies and personal stress management will tend to improve the quality of life of both the patient and the caring family. Some studies have shown that well-informed family involvement in the overall management of patient-care can reduce morbidity (amount and severity of illness) and delay the time before a patient may need to move to a professional care setting. Family support groups are helpful either for the exchange of information or to provide a more structured educational setting. (For example, a programme of nutritional education can help prevent the weight-loss, which is a common complication of the illness). They also help families to deal with difficult and previously un-encountered problems. Support groups which focus on specific objectives have been shown to help improve quality of life for both patients and care-givers.

General Information

*Before Diagnosis : Faced with symptoms suggestive of Alzheimer’s Disease such as poor memory, slowing of activities of daily living etc and after possible non-degenerative causes have been ruled out, it is important to have a complete diagnostic assessment, with full explanation of the reasons for the various tests (possible medications, organisation of help). This enables the doctor to help the patient and family to come to terms with the disease as quickly as possible and to institute early treatment and aids which can slow the disease progression and improve quality of life.

*The announcement of the diagnosis : The diagnosis should ideally be made by a dementia specialist, who will use all the available test results and information to reach a diagnosis then instigate treatment as appropriate. The doctor will try to explain the diagnosis as clearly and precisely as possible and then to repeat and paraphrase as necessary in order to make things clearer. On first hearing the diagnosis a denial response is common. The family will need to be able to express their feelings and reactions in order to progress with their acceptance of the diagnosis and, in particular, it’s consequences. It is important that the doctor and the family (in this case often the extended family) consider carefully who will take on what roles and how burden of responsibility will be shared amongst the family members caring for the patient.
It is of course most important to inform the patient himself of the results of tests and the proposed treatment. More important than the term "Alzheimer" is careful explanation of all the aspects of the disease which will affect the patient. The doctor must also encourage the family to bring the patient into the discussion and to listen to his views on the illness.

*From the earliest stages of the illness, the doctor should mention the progressive nature of the disease and it’s complications, modulating his discussion as appropriate to how the family are coping with the diagnosis. Even at the beginning it is appropriate to discuss the eventual possibility of placement in an institution in order to avoid families becoming trapped into agreements be they verbalised or not, to look after the patient(right to the end). Faced with the need for institutional placement, the family, with this promise in mind, will have the added difficulty of feeling they are reneging on a promise. This may cause feelings of failure and guilt over the placement, and also to argument within the family.

The aim of the information provided is that difficulties be anticipated and avoided by :
1. Helping families identify and manage potentially dangerous situations, such as driving, having responsibility for children, taking medications, or more generally needing supervision at all times.
2. Giving advice about available help for activities of daily living according to the patient’s autonomy.
3. Anticipating and avoiding possible disease complications such as behavioural problems, weight-loss, loss of balance and loss of autonomy.
4. Knowledge and understanding of those particular, critical circumstances which may necessitate certain measures of legal protection. The information given must be straight-forward and practical, with all concerns and issues being aired, enabling sensible, concrete solutions. At this difficult time, families need a re-assuring structure of reference and support.

*During the intermediate stages of the disease, the doctor has an equally vital role. He may help the family to remain objective and to ensure their aims are attainable and appropriate to the patients needs regarding adaptations to his environment, better understanding his behavioural changes and avoiding a feeling of failure about the situation. The progression of the disease increases the risk of carer exhaustion which must be identified as quickly as possible so that extra help may be offered in order to improve the quality of life of care-giver and patient alike.

*The late stages of the disease may be difficult and prolonged and requires a real partnership between the professional carers and the family, whether the patient be at home or in institutional care. It will be important at this stage to plan with the family for their and the patients needs at the end of the patient’s life