Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician

Abstract

This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad – the person, the carer and the clinician – at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level – for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure.

Experiences of people with intellectual disability and dementia: A systematic review

“…Developments in the field show a move towards thinking about how to speak to people about dementia, rather than if a diagnosis should be disclosed or not. This highlights the nuances and complexities involved in taking a person‐centred approach to having conversations about dementia, taking into account people's current stage of the disease, their existing understanding of dementia, people's support networks, as well as their right not to know (Merl et al, 2022 ; Milby et al, 2017 ). Studies on the perspectives of people with dementia about disclosure reflect differences in people's wishes and preferences.…”

“…Studies on the perspectives of people with dementia about disclosure reflect differences in people's wishes and preferences. While some people prefer detailed information, others prefer to know less (Merl et al, 2022 ; Robinson et al, 2011 ). Yet, there is agreement for clear language, the provision of practical guidance on how to live with dementia and positive messages and hope alongside the diagnosis (Lecouturier et al, 2008 ; Merl et al, 2022 ; Poyser & Tickle, 2019 ).…”

“…While some people prefer detailed information, others prefer to know less (Merl et al, 2022 ; Robinson et al, 2011 ). Yet, there is agreement for clear language, the provision of practical guidance on how to live with dementia and positive messages and hope alongside the diagnosis (Lecouturier et al, 2008 ; Merl et al, 2022 ; Poyser & Tickle, 2019 ). Benefits of speaking with people about dementia include the possibility for stronger involvement in future care planning and helping people to make sense of changes they are experiencing (Merl et al, 2022 ; Robinson et al, 2011 ).…”

“…Yet, there is agreement for clear language, the provision of practical guidance on how to live with dementia and positive messages and hope alongside the diagnosis (Lecouturier et al, 2008 ; Merl et al, 2022 ; Poyser & Tickle, 2019 ). Benefits of speaking with people about dementia include the possibility for stronger involvement in future care planning and helping people to make sense of changes they are experiencing (Merl et al, 2022 ; Robinson et al, 2011 ). There is less comparable research in relation to disclosing information about life limiting conditions to people with intellectual disability who often continue to be shielded from such bad news (Tuffrey‐Wijne et al, 2013 , 2020 ; Witham & Haigh, 2018 ).…”

“…Studies on the perspectives of people with dementia about disclosure reflect differences in people's wishes and preferences. While some people prefer detailed information, others prefer to know less (Merl et al, 2022;Robinson et al, 2011).…”