title: The transition to dementia--individual and family experiences of receiving a diagnosis: a review.
abstract: BACKGROUND
  Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia.
  
  
  METHODS
  This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included.
  
  
  RESULTS
  Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns.
  
  
  CONCLUSIONS
  There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term "Alzheimer's disease" appears to have more negative connotations than the word "dementia".
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK. a.l.robinson@ncl.ac.uk
authors.forename: Louise
authors.initials: L
authors.lastname: Robinson
authors.forename: Alan
authors.initials: A
authors.lastname: Gemski
authors.forename: Clare
authors.initials: C
authors.lastname: Abley
authors.forename: John
authors.initials: J
authors.lastname: Bond
authors.forename: John
authors.initials: J
authors.lastname: Keady
authors.forename: Sarah
authors.initials: S
authors.lastname: Campbell
authors.forename: Kritika
authors.initials: K
authors.lastname: Samsi
authors.forename: Jill
authors.initials: J
authors.lastname: Manthorpe
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000544:Alzheimer Disease / Q000150:complications / Q000175:diagnosis / Q000523:psychology / Q000628:therapy; D017028:Caregivers / Q000523:psychology*; D061345:Early Medical Intervention; D015577:Geriatric Assessment / Q000379:methods*; D006801:Humans; D008134:Long-Term Care / Q000523:psychology*; D008569:Memory Disorders / Q000175:diagnosis* / Q000209:etiology / Q000523:psychology; D016743:Mental Competency / Q000523:psychology; D011581:Psychological Tests; D011788:Quality of Life; D012107:Research Design; D012944:Social Support