The concept of health-related quality of life emerged in the seventies in close relationship with the development of palliative and terminal care. Until now, these two new and complementary aspects of modern medicine explored in many different ways the same important field: pain, suffering and other symptoms of cancer patients and their consequences on their own and on their relatives’ quality of life.
Very few studies were devoted to the end of life of demented patients, and very few were focused on the quality of their last phase of life.
This presentation will try to highlight the importance of this topic in clinical daily practice:
· In general, three major dimensions constitute health-related quality of life: disease-specific quality of life, general quality of life and outcomes both disease-focused and personal-focused. The heterogeneity of the patient population, the implication of the informal network of care, the specific and dramatic impact of disease on the social surroundings, the patient’s autonomy and his/her physical daily functioning are some of the challenges one faces when measuring the quality of life.
· Very often during the course of the disease, multiple associated symptoms or signs, or concurrent diseases impose difficult care decisions. Pain assessment and control, feeding needs, antibiotic indications, sleep disturbances and/or behavioural control represent crucial ethical issues. Their good or bad resolution can greatly impact on an individual’s ability to remain in his own home rather than enter a nursing home, on the survival period and the quality of life of the patient and of his/her relatives.
· All these dimensions of the end of life of demented patients confirm the tremendous difficulty of quality of life assessment by staff, proxies and even the patient
· The need for an optimal, accurate and timely communication with the patient and his/her relatives is essential.
· It is also important to remember that the mourning process is closely influenced by the symbolic role of the dying person, the unfulfilled requests, the circumstances of death and the quality of the last moment of life.
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