Which factors explain variation in intention to disclose a diagnosis of dementia? A theory-based survey of mental health professionals

The early care of people with dementia ideally involves a sensitive and accurate explanation of the diagnosis to individuals and informal carer-givers, and information about the likely prognosis and possible packages of care [1]. Timely disclosure can facilitate decisions about treatment – increasingly important with the advent of therapies to slow disease progression – and allows opportunities to plan family, fiscal and long-term care arrangements. In the context of recognised aspects of quality of care, disclosure therefore needs to be patient-centred and timely [2].

From an ethical perspective, people with dementia have a right to know their diagnosis. Furthermore, many want to know their diagnosis or more information about their illness [3‐7]. The majority of people with dementia found it helpful to have been told their diagnosis [3]. Specific benefits include validating their perception that something is wrong [8] and helping them make sense of their experience [5]. Recent qualitative studies have highlighted the range of coping strategies used by people with dementia to adjust to their diagnosis [9‐13]. In contrast, lack of information can cause distress and forestall opportunities to engage in grief work to cope with loss.

Yet disclosure practice by healthcare professionals varies widely [14]. The diagnosis is often disclosed to caregivers but not to people with dementia themselves [15]. There is therefore substantial scope for improving professional practice. A considerable body of literature suggests that a range of interventions (e.g., reminder systems, interactive education) can be effective in changing professional behaviour [16]. But there is little empirical evidence on which strategy is most appropriate in the light of a given context or targeted clinical behaviour [17] due to problems understanding the generalisability of the strategies used. One way forward is to use a generalisable framework such as that offered by theory [18‐20]. Many factors may influence disclosure: patient characteristics (e.g., age, ability to retain the diagnosis); nature of the dementia (e.g., severity, diagnostic uncertainty); structural factors (e.g., time); and clinician factors (e.g., perceived value of disclosure) [14, 21‐27]. Some of these may be amenable to change and hence targeted in efforts to improve disclosure practice. Theoretical models of behaviour change allow identification of potentially modifiable factors to target with an intervention [28]. While it would be useful to identify factors that predict professionals' actual disclosure behaviour, there are several problems in measuring behaviour, such as poor recall of events by people with dementia [29]. However, one potentially modifiable factor that can predict actual behaviour is behavioural intention (or motivation).

Behavioural intention is a valid proxy for behaviour predicting 27–28% of the variance in actual behaviour across a wide range of contexts [30, 31]. A recent systematic review of the relationship between clinical behaviours and behavioural intention found that the proportion of variance in behaviour explained by intention was of a similar magnitude to that found in the literature relating to non-health professionals [32]. Further, behaviour change rarely occurs in those lacking the intention to change their behaviour [33]. In other words, intention is a necessary but not sufficient condition for action. Knowing whether intentions are low is an important part of identifying barriers to action. It is in this spirit that we used intention as an important proximal determinant of behaviour. Therefore, explaining variation in behavioural intention represents a useful step in efforts to improve disclosure practice, consistent with the initial phases recommended for the development and evaluation of complex interventions [34]. This paper describes the first stages of a larger study to develop an intervention to promote appropriate disclosure [35]. We surveyed members of mental health teams (MHTs) for older people to identify factors that predict their intention to disclose a diagnosis of dementia to patients.

Appropriate disclosure of dementia requires a number of interrelated steps and multi-disciplinary input. Most mental health professionals surveyed recognised their roles in and had positive intentions towards performing three disclosure behaviours. The TPB explained between 28.6% and 53.3% of variation in intentions, with subjective norm consistently representing an important explanatory variable. Intention to use explicit terminology was also explained by attitude but – unlike both other behaviours – not by perceived behavioural control.

The TPB tended to explain a greater proportion of variance in intentions than constructs from SCT and the team variables. This was not simply due to the greater number of predictors (four compared with two for SCT and three for team variables): taking only the first two predictor variables from each model, the TPB still accounted for more variance in each behaviour than either of the other two theoretical approaches. The TPB also was relatively parsimonious compared with the regression model which combined all constructs and modestly improved prediction. We did not conduct an analysis that allows the TPB and SCT to compete directly. Instead we added sets of predictors hierarchically, so for the overlapping constructs (e.g., self-efficacy with perceived behavioural control and outcome expectancies with attitude), beta weights were expected to reflect both some of the predictive value of each variable and also the order of entry of variables.

The team variables accounted for considerably more variance in the use of explicit terminology compared with both other behaviours, with the lone variable of being able to rely on colleagues explaining over a third of intention (37.4%). However, this variable explained less variation in the combined constructs model, suggesting that its effects may be mediated through other predictors. For example, subjective norm for the use of explicit terminology may incorporate aspects of teamwork (i.e., 'Members of my MHT would approve of my using the actual words 'dementia' or 'Alzheimer's disease' when talking to the patient.')

Our findings have several implications for improving the quality of disclosure practice. On a 7-point scale, mean intention was 5.72 (SD 1.17) for determining what the patient already knows. This suggests modest scope for further improving intention (and hence actual behaviour) [43]. According to results based on the TPB, interventions predominantly targeting subjective norm and perceived behavioural control may have the greatest impact in changing intention (as these are the strongest predictors of intention), with lesser effects expected by targeting attitudes. While there is no guarantee that changing a significant predictor will result in changed behaviour, this approach uses an evidence base in a systematic way to select intervention components and thus to move forward from correlational designs and test plausible hypotheses using experimental designs.

For the use of explicit terminology, the mean intention score was 4.66 (SD 1.47) and lowest out of the three behaviours. This suggests relatively greater potential exists for changing intention and hence practice. Interventions targeting subjective norm, attitudes relating to outcomes for the patient and professional and, possibly, emotional attitude may represent key targets for intervention. However, the team variables – whether professionals perceived they could rely on colleagues to use explicit terminology and whether professionals also believed this behaviour to be compatible with their own roles – explained over 40% of variation in intention. Interventions around clarifying and revising team roles may offer promising means of changing intention, potentially also operating via influencing subjective norms.

For exploring what the diagnosis means to the patient, the mean intention score of 5.41 (SD 1.32) suggests modest scope for changing intention and hence behaviour. Interventions targeting subjective norms and perceived behavioural control offer the most promising means of achieving this.

Consistent with the predictions of SCT, both self-efficacy and outcome expectancies explained intention for all three behaviours, albeit less than the TPB variables did. Given the overlap with attitude, the pattern of outcome expectancies predicting intention across the three behaviours is expected. However, strategies to improve disclosure practice should also consider means of enhancing self-efficacy.

Earlier studies have investigated reasons why mental health professionals do or do not disclose dementia [3‐6]. Their methods have several limitations which have been addressed by this study. First, the interpretation of these and studies in other contexts that attempt to understand clinical practice or improve quality of care is often hampered by the lack of an underlying robust theoretical model that explains behaviour in terms of cognitive factors. The assumption that clinical practice is a form of human behaviour and can be described in terms of general theories relating to human behaviour offers the basis for a generalisable framework for understanding and developing interventions to change professional behaviour. Second, professionals' reported reasons for their actions may not explain their actual practice. Social desirability bias may explain why respondents to our survey rated their own intentions, attitudes and beliefs in a relatively favourable light. However, other studies have demonstrated that measuring behavioural intention using similar methods can usefully predict actual behaviour [30‐32]. Third, many previously reported barriers to appropriate disclosure are less amenable to change within the present healthcare context and resources, e.g., severity of dementia or lack of time. We examined potentially modifiable variables, namely, behavioural intention and its predictors.

One limitation to this study was the relatively low response rate (31%) from the eligible sample. This was probably partly attributable to the staged 'opt-in' process necessary to comply with data protection legislation. Most (95%) professionals who opted in to do the survey did complete questionnaires. However, external validity may be undermined if respondents differed systematically from non-respondents, e.g., had more positive attitudes towards disclosure.

We did not explore the contribution of professional roles in predicting intention, largely because it was beyond the scope of this paper. We are presently addressing this issue in another survey, within a subsequent stage of this programme of work, using a much larger sample which will allow better precision for exploring differences between professional groups.

We do not claim that other intervention strategies, such as restructuring teams or care delivery processes, would be of lesser effectiveness than any intervention developed using the approach we describe. Such environmental or organisational changes may also change underlying psychological factors – so that changes in beliefs or attitudes following 'forced' changes in practice. The perspective of social cognitive theories is that external influences on behaviour are mediated through perceptions of individuals (i.e., the predictor variables in the theories we have used). They do not claim that external influences do not 'drive' behaviour; merely that they are unlikely to drive behaviour without the awareness of the person who is behaving. We have made the assumption that the disclosure behaviours under investigation are enacted voluntarily, with low levels of automatism.

Our findings provide an empirically-supported, theoretical basis for the design of interventions to improve the quality of disclosure practice by targeting relevant predictive factors. It is uncertain whether the causal relationships predicted by theory would be seen in a subsequent intervention study. For example, the factors that determine current behaviour may differ from those that determine change in behaviour. The next step is therefore to evaluate whether interventions targeting the key predictive variables identified in this study do increase intention.