Abstract :
[en] Definition and measure of quality of life (QoL) raise many conceptual and methodological problems. Its assessment in Alzheimer's disease and related disorders is relatively recent. It uses self-assessment or proxy assessment tools. These are the subject of much debate and involve some biases.
Current research mainly aims to assess the global level of Alzheimer's QoL, specify the impact of disease and identify the factors that influence it. Data resulting from recent studies using a same instrument, the Alzheimer’s Disease Related Quality of Life (ADRQL), show that the decrease in QoL is less catastrophic than what is usually stated. This is influenced by the level of dependency, by cognitive deficits and especially psychological and behavioural disorders. Moreover, QoL does not seem to decrease linearly during the staging. It may have periods of stability despite the worsening of cognitive impairment. QoL does not appear to be higher in subjects living at home.
Current data could contribute to ethical debates about the meaning to life of Alzheimer persons, on their end-of-life and the finality of care.
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