This study identified key components of the process of disclosing a diagnosis of dementia as part of the development of an intervention to promote appropriate disclosure and explored whether supplementing a literature review with other methods would result in the identification of additional behaviours. The literature search identified the largest number of behaviours (193), with the panel and interviews together eliciting an additional 27 behaviours. The high level of agreement between data from the literature, interviews and consensus panel suggests that although much of the literature focuses on breaking bad news to people with cancer, it is nevertheless highly relevant to disclosing a diagnosis of dementia. The interviews not only provided behaviours unique to people with dementia and their carers but also confirmed the need for intervention by highlighting deficiencies in current practice. The panel placed a greater emphasis on preparing for disclosure and managing the role of family members in the disclosure process than was expressed in the literature.
Our eight categories of behaviours relating to diagnostic disclosure are consistent with recent studies of disclosure in dementia. The need for pre-diagnostic counselling and preparation for disclosure has been emphasised [29
]. While some people with dementia and family members anticipate their diagnosis [2
] others have not previously considered dementia as a possible cause for their problems [5
]. The latter group are likely to perceive the diagnosis as a shock [2
] and this may limit their ability to process the information [32
]. Advising people of the potential for a diagnosis of dementia resulted in lower levels of anxiety after disclosure of the formal diagnosis [22
] confirming the value of adequate preparation. Exploring the patient's perspective also enables explanations to be linked to their personal experience which may facilitate understanding [4
]. Although some behaviours, such as holding the meeting in an appropriate physical setting and the presence of professionals already known to the person with dementia and family, may seem self-evident, their importance has also been documented in previous studies [29
Integrating family member(s) into the process of disclosure provides an opportunity for patients and carers to learn to talk together about the diagnosis [32
]. Given that much of the process of adjusting to a diagnosis of dementia takes place without professional involvement [1
], providing a supportive social context in which people with dementia can undertake this process is essential [3
]. The importance of opportunities to talk separately to people with dementia and family member(s) has also been highlighted, since family member(s) can find it difficult to speak openly about their difficulties and fears in the presence of the person with dementia [36
]. Furthermore, joint meetings can lead to inadequate exploration of the patient's perspective due to the tendency of family members to speak for people with dementia [36
Contradictory behaviours were identified in relation to disclosing the diagnosis. Consistent with previous literature, being direct and using explicit terminology were included [16
]. However, the need to use terminology carefully to avoid burdening the patient with unwanted information was also identified. These contradictions emphasise the need to tailor the process (and terminology) to the preferences of individual patients and their families. Similar issues arise in relation to the discussion of prognosis. While a number of behaviours relating to prognosis were identified in the present study, preferences for detailed information about the future vary [4
]. Consequently, eliciting preferences for information on prognosis is crucial. Even after apparent disclosure, people with dementia and family members have variable understandings of their diagnosis [1
], highlighting the need to check understanding and explore the meaning(s) of dementia. Analysis of audio-recordings of disclosure meetings, however, suggested that physicians paid little attention to enhancing understanding of the diagnosis and used a variety of techniques to minimise the seriousness of the diagnosis and avoid detailed discussion [16
]. This suggests a clear mismatch between professional skills and competencies and the needs of people with dementia and carers.
A wide range of types and intensity of emotional reactions to a diagnosis of dementia have been reported [29
]. Professionals need be prepared to manage a range of emotional responses and provide space for these to be expressed [29
]. Since some of the distress caused by a diagnosis of dementia relates to the negative attitudes and preconceptions about the illness, it is also important to explore these and to provide a more balanced view [45
]. Many of the behaviours we identified relating to quality of life and well-being are consistent with findings of recent studies. For example, studies have emphasised the need to provide information that instils positive attitudes and hope [35
], emphasises the remaining capacities [32
] and balances hope and realism [29
]. Following disclosure there may be few opportunities for people with dementia and their carers to make sense of their diagnosis [31
]. Post-diagnostic counselling or follow-up meetings have been suggested [30
]. Rather than being of a prescribed format and duration [36
], a more flexible approach to follow-up is required to meet the widely varying needs and preferences of people with dementia and their families.
A range of issues relating to communication were identified which have previously been highlighted in the literature, including pacing [32
]; use of non-verbal forms of communication such as diagrams or flow charts [29
]; and the need to summarise information to aid recall [29
There are limitations in our study. Firstly, because of difficulties with recruitment, we were only able to conduct four interviews with people with dementia and six interviews with carers. However, despite the small sample, we identified 112 behaviours from the interview data and were able to engage in discussions in some depth. Secondly, we were somewhat surprised, considering the range of health and social care professionals who participated, that a greater number of behaviours were not identified by the consensus panel. In retrospect we feel that the structured approach used may have restricted the responses of the panel members and resulted in a focus on what they perceived as the most important disclosure behaviours rather than the full range of behaviours. Although a more open-ended approach may not have resulted in the identification of additional behaviours, the congruence between behaviours identified by the panel and other sources might have been increased.
Although we identified 220 component behaviours of disclosure, there are little empirical data available concerning either the extent to which these behaviours are performed in routine practice or their influence on the experience of receiving bad news. We believe further research is needed to fully evaluate approaches to disclosing a diagnosis not only in relation to dementia but in other life threatening or life changing clinical conditions.