title: From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences.
abstract: BACKGROUND
  The National Dementia Strategy in England stressed the importance of earlier diagnosis of dementia. In-depth knowledge of the experiences of patients using such services remains an evidence gap.
  
  
  OBJECTIVE
  To increase understanding of the experiences  of people developing dementia and of their carers, to inform practice and decision making.
  
  
  METHODS
  A retrospective and prospective qualitative interview study of participants recruited from four memory clinics in London, the north-west and the north-east of England.
  
  
  METHODS
  Purposive sampling was used to recruit 27 individuals with memory problems and 26 supporters and carers. Interviews explored referral pathways, assessment processes, disclosure of the diagnosis, experiences of being prescribed medication to help with symptoms, and issues  of risk and decision making.
  
  
  RESULTS
  Few participants experienced the process of memory assessment as patient centred. Where assessment processes were lengthy and drawn out, participants experienced considerable uncertainty. Many experienced tests and assessments as distressing,  sometimes in settings that were perceived as alarming or potentially stigmatising by association. Information provision and communication were variable and practitioners were not always thought to help people to make sense of their experiences.
  
  
  CONCLUSIONS
  The transition  from the early stages of cognitive impairment is not straightforward. There is potentially much uncertainty and waiting. Primary care practitioners may be better able to provide tailored support to individuals and their carers during this time if they are aware of what patients are anticipating  and are informed about the diagnostic 'journey' by the insights of those who have experienced it.
authors: Social Care Workforce Research Unit, King's College London, London WC2R 2LS, UK. jill.manthorpe@kcl.ac.uk
authors: Jill
authors: J
authors: Manthorpe
authors: Kritika
authors: K
authors: Samsi
authors: Sarah
authors: S
authors: Campbell
authors: Clare
authors: C
authors: Abley
authors: John
authors: J
authors: Keady
authors: John
authors: J
authors: Bond
authors: Sue
authors: S
authors: Watts
authors: Louise
authors: L
authors: Robinson
authors: James
authors: J
authors: Warner
authors: Steve
authors: S
authors: Iliffe
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy; D001364:Awareness; D003142:Communication; D003657:Decision Making; D003704:Dementia / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy; D004739:England / Q000453:epidemiology; D005260:Female; D006801:Humans; D008297:Male; D008569:Memory Disorders / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy; D008875:Middle Aged; D018802:Patient-Centered Care / Q000458:organization & administration*; D011320:Primary Health Care; D011368:Professional-Family Relations; D011369:Professional-Patient Relations; D011379:Prognosis; D011446:Prospective Studies; D036301:Qualitative Research; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D014342:Truth Disclosure