Premium
Negotiating a Labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia
Author(s) -
Samsi Kritika,
Abley Clare,
Campbell Sarah,
Keady John,
Manthorpe Jill,
Robinson Louise,
Watts Sue,
Bond John
Publication year - 2014
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.3969
Subject(s) - dementia , psychology , clarity , negotiation , cognition , feeling , anxiety , memory clinic , qualitative research , memory impairment , cognitive reframing , service (business) , cognitive impairment , service provider , clinical psychology , psychiatry , social psychology , medicine , sociology , social science , biochemistry , chemistry , economy , disease , pathology , economics
Objectives There has been a global push towards the earlier diagnosis of dementia, but there is little understanding of the transitions along the assessment and diagnostic pathway from the perspective of people affected by memory problems, cognitive impairment and early dementia. This study explores the experience of the assessment and diagnostic pathway for people with cognitive impairment and their family carers. Methods Qualitative interviews with 27 people with cognitive impairment and 26 carers (20 dyads) using four memory services before and after diagnosis disclosure were conducted. Interview transcripts were subject to constant comparative analysis and interpretations subject to discussion at regular ‘analysis clinics’. Results Twelve sub‐themes were identified along four points on the assessment journey. Feelings of confusion, uncertainty and anxiety over interminable waiting times dominated. Participants often felt without support to manage their uncertainties, emotions and did not know where to turn for support. Some were highly critical of the systemic process of assessment and diagnosis disclosure but were generally positive of the practice of individual professionals. Conclusions Service providers should review the process of assessment and diagnosis disclosure for people with cognitive impairment and their carers. They should develop a process that is person centred and accommodates the individualised preferences. The development of service systems to provide continuous relevant information and clarity to service users needs to involve all stakeholders, including people with cognitive impairment and their carers. Copyright © 2013 John Wiley & Sons, Ltd.