The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

Int Psychogeriatr. 2017 Jan;29(1):93-104. doi: 10.1017/S1041610216001484. Epub 2016 Oct 17.

Abstract

Background: Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists' subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia.

Methods: This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA).

Results: Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) "The levels of well-being" (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) "Living well is a process" (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care).

Conclusions: Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.

Keywords: Alzheimer's disease (AD); clinical assessment; dementia; qualitative research; quality of life (QoL).

MeSH terms

  • Attitude of Health Personnel*
  • Communication
  • Dementia / diagnosis*
  • Humans
  • Interviews as Topic
  • Physician-Patient Relations*
  • Psychiatry*
  • Qualitative Research
  • Quality of Life
  • Truth Disclosure*