title: [Problems and needs of informal caregivers of persons with dementia: a comparison between the initial stage and subsequent stages of the illness process].
abstract: This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.
authors.affiliation: NIVEL, Nederlands instituut voor onderzoek van de gezondheidszorg, Utrecht. M.Zwaanswijk@nivel.ni
authors.forename: M
authors.initials: M
authors.lastname: Zwaanswijk
authors.forename: A P A
authors.initials: AP
authors.lastname: van Beek
authors.forename: J
authors.initials: J
authors.lastname: Peeters
authors.forename: J
authors.initials: J
authors.lastname: Meerveld
authors.forename: A L
authors.initials: AL
authors.lastname: Francke
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000628:therapy; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D012720:Severity of Illness Index; D012944:Social Support; D013315:Stress, Psychological; D013997:Time Factors