title: Complaints of informal caregivers providing home care for dementia patients: the Pixel study.
abstract: BACKGROUND
  Prospective study of the complaints, problems and requirements of the main caregiver providing home care for dementia patients.
  
  
  OBJECTIVE
  To determine the complaints of home caregivers, how they are interrelated and what causes them.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Poitiers University Hospital, Poitiers, France. thomasphil@interpc.fr
authors.forename: Philippe
authors.initials: P
authors.lastname: Thomas
authors.forename: Stéphanie
authors.initials: S
authors.lastname: Chantoin-Merlet
authors.forename: Cyril
authors.initials: C
authors.lastname: Hazif-Thomas
authors.forename: Joël
authors.initials: J
authors.lastname: Belmin
authors.forename: Bernard
authors.initials: B
authors.lastname: Montagne
authors.forename: Jean-Pierre
authors.initials: JP
authors.lastname: Clément
authors.forename: Marianne
authors.initials: M
authors.lastname: Lebruchec
authors.forename: Rémy
authors.initials: R
authors.lastname: Billon
mesh_terms: D000368:Aged; D000704:Analysis of Variance; D017028:Caregivers / Q000523:psychology*; D016000:Cluster Analysis; D003072:Cognition Disorders / Q000523:psychology / Q000628:therapy; D003258:Consumer Behavior; D003704:Dementia / Q000523:psychology* / Q000628:therapy; D005260:Female; D005602:France; D006701:Home Nursing / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D017678:Sex Distribution; D012944:Social Support; D011795:Surveys and Questionnaires