Thomas Philippe, Chantoin-Merlet Stéphanie, Hazif-Thomas Cyril, Belmin Joël, Montagne Bernard, Clément Jean-Pierre, Lebruchec Marianne, Billon Rémy
Poitiers University Hospital, Poitiers, France.
Int J Geriatr Psychiatry. 2002 Nov;17(11):1034-47. doi: 10.1002/gps.746.
Prospective study of the complaints, problems and requirements of the main caregiver providing home care for dementia patients.
To determine the complaints of home caregivers, how they are interrelated and what causes them.
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.
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.
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.
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.
对为痴呆症患者提供家庭护理的主要照料者的抱怨、问题和需求进行前瞻性研究。
确定家庭照料者的抱怨、这些抱怨之间的相互关系以及产生这些抱怨的原因。
一份针对患者和照料者的42个问题的自填式问卷，包括一份抱怨清单，发放给主要照料者。由主治医生（通常是专科医生、自由职业医生或受薪医生）填写的关于患者的医学问卷。
共收集了408套记录，涉及236名痴呆症女性（77.1±0.47岁）和172名痴呆症男性（75.7±0.57岁）。在三分之二的案例中，主要照料者是一名60.6±0.79岁的女性。女性照料者比男性照料者更脆弱。无论疾病处于哪个阶段，照料者最常见的抱怨是失去动力和退缩。患者对疾病的认知伴随着运动功能障碍和攻击性的减轻，但与照料者报告的失去动力的抱怨频率较高有关。照料者的问题主要是无法得到缓解以及没有属于自己的时间。照料者对信息的需求涉及医疗信息、护理机构和日托设施。
主治医生与患者密切接触，但必须考虑患者的生活环境。医生可以为照料者提供单独的分析，但不能完全回答某些家庭问题或满足某些家庭需求。他或她不是家庭的主要信息来源。照料者的需求涉及主治医生职责范围内的领域：疾病的发展和特征。照料者对患者的未来感到焦虑，并且因参与护理而陷入困境，因缺乏缓解而承受巨大痛苦。
有必要改变痴呆症患者家庭护理的重点，以适应他们的生活环境，并为家庭照料者提供缓解的时间。
