title: Alzheimer's disease in real life--the dementia carer's survey.
abstract: BACKGROUND
  Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services.
  
  
  METHODS
  The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services.
  
  
  RESULTS
  Each country had approximately 200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10 h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good.
  
  
  CONCLUSIONS
  Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour.
authors.affiliation: Alzheimer Europe, Luxembourg. jean.georges@alzheimer-europe.org
authors.forename: Jean
authors.initials: J
authors.lastname: Georges
authors.forename: Sabine
authors.initials: S
authors.lastname: Jansen
authors.forename: Jim
authors.initials: J
authors.lastname: Jackson
authors.forename: Arlette
authors.initials: A
authors.lastname: Meyrieux
authors.forename: Alicja
authors.initials: A
authors.lastname: Sadowska
authors.forename: Micheline
authors.initials: M
authors.lastname: Selmes
mesh_terms: D000368:Aged; D000544:Alzheimer Disease / Q000191:economics / Q000523:psychology* / Q000534:rehabilitation; D017028:Caregivers / Q000523:psychology*; D003156:Community Mental Health Services / Q000592:standards* / Q000706:statistics & numerical data; D017281:Cost of Illness; D003431:Cross-Cultural Comparison; D005060:Europe; D005192:Family Health; D005260:Female; D006801:Humans; D008297:Male; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires