title: Rational decision-making about treatment and care in dementia: a contradiction in terms?
abstract: OBJECTIVE
  To gain caregivers' insights into the decision-making process in dementia patients with regard to treatment and care.
  
  
  METHODS
  Four focus group interviews (n=29).
  
  
  RESULTS
  The decision-making process consists of three elementary components: (1) identifying an individual's needs; (2) exploring options; and (3) making a choice. The most important phase is the exploration phase as it is crucial for the acceptance of the disease. Furthermore, the decision is experienced more as an emotional choice than a rational one. It is influenced by personal preferences whereas practical aspects do not seem to play a substantial role.
  
  
  CONCLUSIONS
  Several aspects make decision-making in dementia different from decision-making in the context of other chronic diseases: (1) the difficulty accepting dementia; (2) the progressive nature of dementia; (3) patient's reliance on surrogate decision-making; and (4) strong emotions. Due to these aspects, the decision-making process is very time-consuming, especially the crucial exploration phase.
  
  
  CONCLUSIONS
  A more active role is required of both the caregiver and the health care professional especially in the exploration phase, enabling easier acceptance and adjustment to the disease. Acceptance is an important condition for reducing anxiety and resistance to care that may offer significant benefits in the future.
authors: School for Mental Health and Neuroscience (MHeNS), Department of Psychiatry and Psychology, Maastricht University Medical Centre (MUMC+), The Netherlands. claire.wolfs@np.unimaas.nl
authors: Claire A G
authors: CA
authors: Wolfs
authors: Marjolein E
authors: ME
authors: de Vugt
authors: Mike
authors: M
authors: Verkaaik
authors: Marc
authors: M
authors: Haufe
authors: Paul-Jeroen
authors: PJ
authors: Verkade
authors: Frans R J
authors: FR
authors: Verhey
authors: Fred
authors: F
authors: Stevens
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D002755:Choice Behavior; D003657:Decision Making; D003704:Dementia / Q000451:nursing / Q000628:therapy; D004644:Emotions; D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010342:Patient Acceptance of Health Care; D010358:Patient Participation; D057240:Patient Preference; D010817:Physician-Patient Relations; D017064:Process Assessment, Health Care / Q000379:methods*; D036301:Qualitative Research