Caregivers' and patients' quality of life are related and both share a community of distress.

It is necessary to change the focus of home care for dementia patients to fit the context in which they live and to allow for periods of relief for home caregivers.

It is necessary to change the focus of home care for dementia patients towards preventing loss of autonomy and its consequences and to allow for periods of relief for home caregivers.

Background The aim of this study is to look at the correlation between the presence of apathy measured by Marin's scale and family complaints related to withdrawal and the loss of motivation, or depression. The multicentre study was performed on 58 non‐demented elderly people, 132 outpatients with Alzheimer's‐type dementia, as well as their main caregiver. Methods After agreement of the patients and the family, the patients were assessed using different scales: Cornell's for depression, Marin's for apathy, MMS for cognitive disorders, and IRG for dependence. At the same time, two self‐administered questionnaires were given to the patients' families: one concerning a list of complaints scored from 1 to 4 relating to various disorders and the other addressing the boundary ambiguities translated from Boss' questionnaire. The 58 non‐demented people were 81.20 years old±13.75. One hundred and thirty‐two demented patients were included: 39 men and 93 women. The mean age was 79.47 years±9.03. Results The first family complaint relates to the loss of motivation (65%). Apathy and depression occur more frequently in dementia, in particular when the MMS is degraded. Depression and apathy attracted a high complaint score. In our study the score of boundary ambiguity is higher among patients with a weak cognitive status. A high level of ambiguity is accompanied by a high score of family complaints. When the family complaint concerning the loss of motivation is present, apathy is significantly more common. Family complaints about withdrawal and loss of motivation are frequently present, and are congruent with the actual presence of apathy in the patient. It bears witness to the distress felt by families faced with the loss of ability noted in the demented person. The family's difficulties are increased by the patient's depression. Copyright © 2001 John Wiley & Sons, Ltd.

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