Article

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

Institute of Health and Society, Newcastle University, The Medical School, Framlington Place, Newcastle upon Tyne, UK.
BMC Health Services Research (Impact Factor: 1.66). 02/2008; 8(1):95. DOI: 10.1186/1472-6963-8-95
Source: PubMed

ABSTRACT 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.
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.
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.
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.

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    • "Timely diagnosis À which is increasingly the preferred term (Brooker, La Fontaine, Evans, Bray, & Saad, 2014) À enables the early initiation of treatment, including pharmacological and psychosocial interventions such as cognitive stimulation therapy, and it has been demonstrated that this can delay admission to nursing homes and time to dependency (Leung et al., 2011). It has also been suggested that 'catastrophic' reactions to the diagnosis of dementia from individuals are relatively uncommon (Lecouturier et al., 2008; Moore & Cahill, 2013). The existing literature suggests that health professionals (particularly general practitioners but also specialist psychiatrists and neurologists) find the diagnostic delivery process more challenging than patients and carers (Kaduszkiewicz, Bachmann, & van den Bussche, 2008; Hellstr€ om & Torres, 2013). "
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    • "When approaching a new diagnosis, the acceptance by the patient often involves a process of assimilation of information and accommodation to existing beliefs. Experience with other conditions, such as dementia and cancer, suggest that the sharing of potentially difficult diagnoses is seldom a ‘one-off’ process [35,36]. The detection of depression associated with chronic physical illness in primary care in the face of multiple competing demands is therefore a more complex task than previously appreciated [37]. "
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    • "Pre-diagnostic counselling that discusses patient preferences , expectations and possible outcomes has shown benefits in other significant illnesses but is used infrequently in dementia care (Woods & Pratt, 2005; Lecouturier et al., 2008), and this study provides evidence for its need. This could manage expectations as well as explore how the person with cognitive impairment and carer may receive a diagnosis. "
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