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: 1.71). 02/2008; 8(1):95. DOI: 10.1186/1472-6963-8-95
Source: PubMed


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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    ABSTRACT: Objectives: Whether and how patients should be told their dementia diagnosis, has been an area of much debate. While there is now recognition that early diagnosis is important for dementia care little research has looked at how dementia-related diagnostic information is actually verbally communicated. The limited previous research suggests that the absence of explicit terminology (e.g., use of the term Alzheimer's) is problematic. This paper interrogates this assumption through a conversation analysis of British naturalistic memory clinic interaction. Method: This paper is based on video-recordings of communication within a UK memory clinic. Appointments with 29 patients and accompanying persons were recorded, and the corpus was repeatedly listened to, in conjunction with the transcripts in order to identify the segments of talk where there was an action hearable as diagnostic delivery, that is where the clinician is evaluating the patient's condition. Results: Using a conversation analytic approach this analysis suggests that diagnostic communication, which is sensitive and responsive to the patient and their carers, is not predicated on the presence or absence of particular lexical choices. There is inherent complexity regarding dementia diagnosis, especially in the ‘early stages’, which is produced through and reflected in diagnostic talk in clinical encounters. Conclusion: In the context of continuity of dementia care, diagnostic information is communicated in a way that conforms to intersubjective norms of minimizing catastrophic reactions in medical communication, and is sensitive to problems associated with ‘insight’ in terms of delivery and receipt or non-receipt of diagnosis.
    Aging and Mental Health 02/2015; 19(12). DOI:10.1080/13607863.2014.1003289 · 1.75 Impact Factor
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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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    ABSTRACT: Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment.
    BMC Family Practice 02/2014; 15(1):37. DOI:10.1186/1471-2296-15-37 · 1.67 Impact Factor
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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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    ABSTRACT: 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'. ResultsTwelve 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 (c) 2013 John Wiley & Sons, Ltd.
    International Journal of Geriatric Psychiatry 01/2014; 29(1). DOI:10.1002/gps.3969 · 2.87 Impact Factor
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