Research article

Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice'

Jan Lecouturier¹ , Claire Bamford² , Julian C Hughes³ , Jillian J Francis⁴ , Robbie Foy² , Marie Johnston⁵ and Martin P Eccles²

¹Institute of Health and Society, Newcastle University, The Medical School, Framlington Place, Newcastle upon Tyne, UK

²Institute of Health and Society, Newcastle University, 21 Claremont Place, Newcastle upon Tyne, UK

³Northumbria Healthcare NHS Foundation Trust and the Institute for Ageing and Health, Newcastle University, Newcastle upon Tyne, UK

⁴Health Services Research Unit, Health Sciences Building, University of Aberdeen, Foresterhill, Aberdeen, UK

⁵School of Psychology, College of Life Sciences and Medicine, William Guild Building, University of Aberdeen, UK

author email corresponding author email

BMC Health Services Research 2008, 8:95doi:10.1186/1472-6963-8-95

Published:	1 May 2008

Abstract

Background

Despite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours.

Methods

To identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out.

Results

Interviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patient's perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively.

Conclusion

This exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.