Negotiating a labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia

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.