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Background: Alzheimer's disease and related syndromes have heavy social and human consequences for the patient and his family. Beyond the neuropsychiatric effects of specific therapies for dementia, one of today's challenges is the quality of life for both patients and their informal caregivers., Objectives: This survey tends to determine parameters influencing caregivers' quality of life, and its possible link with patients' quality of life., Methods: A scale measuring caregivers' quality of life, developed from data from previous PIXEL studies was used. It is a questionnaire composed of 20 items. The scale was related to the socio-demographic data of both patients and their main caregivers, to the ADRQL scale (Alzheimer Disease Related Quality Life) of Rabins for the QoL of dementia patients, to the patients medical and therapeutic data, specially a neuropsychological inventory: Folstein's cognition test, Cornell's depression scale, the fast battery of frontal assessment, Katz's dependence index, Cummings' neuropsychiatric inventory for behavioral and psychological symptoms of dementia and to a physician evaluation of caregiver's depression., Results: One hundred patients diagnosed with dementia who live at home with their principal caregivers were recruited for this survey. Patients were 80.2 +/- 6.8 years old and caregivers were 65.7 +/- 12.8 years old. The caregivers' quality of life was correlated to the quality of life of the patients they cared for, the importance of behavioral disorders, and the duration of dementia evolution. Women caregivers had a worse quality of life and were more depressive than men., Discussion: Caregivers' and patients' quality of life are related and both share a community of distress., (Copyright 2005 John Wiley & Sons, Ltd.)

Unlabelled: Caregivers of demented outpatients can have a weak health, are often old and alone, and the burden of care can generate precariousness., Objectives: This survey tends to determine the parameters influencing the caregiver's Quality of Life (QoL) and precariousness, and to measure their consequences., Methods: A scale measuring caregivers' QoL and a scale measuring precariousness, developed from data of previous PIXEL studies were used. Each scale is a 20-item questionnaire. The results were related to the socio-demographic data of both patients and their principal caregivers, and to the patients' medical and therapeutic data., Results: 1.410 patients diagnosed with dementia who lived at home with their principal caregivers were included in this survey. The caregivers' QoL was correlated to the carers' precariousness. Females caregivers had poorer QoL and more precariousness than men. Caregivers' QoL and precariousness were favourably influenced by specific dementia treatment. Frail caregivers had a poor QoL and an important precariousness. They were often sick and had to deal with nutritional difficulties with the demented patient. They were less satisfied with their care ability and their relationships with their patients., Discussion: Caregivers' QoL and precariousness are related and both express their distress. The specific treatment of dementia is beneficial for both of them. Presumably, this benefit would be increased by supportive care of carer and patient.

Context: Study of the problems and requirements of the main caregiver providing home care for dementia patients that have resulted in the patient being institutionalised., Objectives: To determine the reasons for placing the dementia patient in an institution., Resources: Self-administered questionnaire of 48 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the geriatrician., Results: Data were collected from 109 questionnaires concerning 75 females with dementia (84.7 +/- 6.7 years) and 34 demented males (80.8 +/- 7.4 years). In two-thirds of cases the main caregiver was a female, aged 61.1 +/- 12.1 years. Cognitive disorders were not the main reasons for institutionalizing patients. The most frequent caregiver complaint at the time of institutionalisation was incontinence, followed by withdrawal. The caregiver's main problem resulting in institutionalisation was dependence, with behavioural disorders in second place. A treatment with anticholinesterase for dementia was associated with a live-in career being provided for 20 months longer than in the case of patients not receiving this treatment. Statistical analysis revealed 6 groups of separate caregiver-patient situations. On the one hand there were those patients who appeared to be easy for the caregiver to cope with: those with no problems, docile patients and passive patients not opposing care. In these cases the caregiver was most often young and male, or not directly related to the patient. On the other hand there were 3 other groups: patients with inappropriate motor behaviours, violent/agitated patients and unmotivated patients who opposed care. These patients lived with an elderly caregiver who had been looking after the patient for several years., Discussion: Caregivers' requirements are for help with coping with and preventing dependence. The caregiver suffers terribly from a lack of relief, particularly when young., Conclusion: 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., (Copyright 2004 John Wiley & Sons, Ltd.)

Context: Prospective study of the complaints, problems and requirements of the main caregiver providing home care for dementia patients., Objectives: To determine the complaints of home caregivers, how they are interrelated and what causes them., Resources: Self-administered questionnaire of 42 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the attending physician, usually a specialist, freelance or salaried doctor., Results: 408 sets of records were compiled, concerning 236 demented women (77.1 +/- 0.47 years) and 172 demented men (75.7 +/- 0.57 years). In two-thirds of cases, the main caregiver was a woman aged 60.6 +/- 0.79 years. Female caregivers were more vulnerable than male caregivers. The most frequent caregiver complaint, regardless of the stage of the disease, concerned loss of motivation and withdrawal. The patient's awareness of the disorder was accompanied by a reduction in motor dysfunction and aggressiveness, but associated with a higher frequency of the complaint regarding loss of motivation reported by the caregiver. The caregivers' problems concerned mainly the absence of relief and the impossibility of having any time to themselves. Caregivers' requests for information concerned medical information, care structures and day care facilities., Discussion: The attending physician comes into close contact with the patient, but must take into account the patient's environment. The physician can provides a separate analysis to the caregiver and does not completely answer to certain family questions or needs. He or she is not the family's prime source of information. The caregivers' requirements relate to the areas that are the attending physician's responsibility: the development and characteristics of the disease. The caregiver is anxious about the patient's future and is trapped by his or her involvement in the care, suffering greatly from the lack of relief., Conclusions: 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., (Copyright 2002 John Wiley & Sons, Ltd.)