It's all in the details: Physician variability in disclosing a dementia diagnosis

Abstract

This study explored physician opinion about how to disclose a dementia diagnosis. Qualitative analysis was used to examine group and individual variability regarding the philosophy about and pragmatics of disclosure in a sample of physicians experienced with dementia. While all clinicians believed they should disclose a dementia diagnosis, there was wide variability in what 'disclosure' meant to them. Even individual physicians said their disclosure strategy differs from patient to patient depending on the specifics of each case. Variability was seen in attitudes about when and to whom they disclose a dementia diagnosis, who should deliver the news, what language is used, and what topics are covered. Each physician seemed to apply an idiosyncratic and complex algorithm to make decisions about these process features of the conversation. They weigh shifting perceptions of the utility of disclosure in conjunction with a desire to facilitate care planning, an awareness of family dynamics, a responsibility to acknowledge preferences, and an obligation to communicate clear information, all within the time constraints of a medical consultation. Further empirical research is needed to establish best practices that promote psychological adjustment and successful disease management in patients and caregivers who receive a dementia diagnosis.

Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice

“…21 Kissel and Carpenter found wide variation in GPs' disclosure practices (for example, words used, topics covered), with their strategy differing from patient to patient. 22 The difficulty with disclosing to patients may be because dementia carries a huge burden of stigma: [23][24][25][26] devaluation, social exclusion, reduced autonomy, and loss of status. 26 Robinson and colleagues showed GPs were cognisant of the emotive dimensions of diagnosis, although they were unsure how to address them.…”

The ‘D’ word: Reflections on the relationship between stigma, discrimination and dementia

“…That people with dementia may be capable of enjoyment or of experiencing a satisfactory, or even good, quality of life is unthinkable (Livingstone et al, 2008). These views are reflected in, and in turn mirror, the widespread public perception of dementia as an incurable condition about which ''nothing can be done'' (Kissel & Carpenter, 2007). The invisibility of many people with dementia to public gaze amplifies this tendency and contributes to their social exclusion and low status (Age Concern and the Mental Health Foundation, 2006).…”

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

“…However, practitioners in many studies disliked the term Alzheimer's, some preferring to use the term dementia. Kissel and Carpenter, 2007) Practitioners used euphemisms most commonly describing problems with memory (e.g. memory problems, memory loss' or the brain (brain ageing, brain shrinking, loss of brain cells) rather than naming the disease.…”

“…Communicating a diagnosis of dementia Kissel and Carpenter, 2007) Despite all of the GPs in this study unequivocally claiming that an early diagnosis of dementia was important, several stated that they themselves were not proactive in the area and most were reluctant to diagnose early as they felt that a diagnosis of dementia was very difficult to give and had profound implications. (Researcher, Moore and Cahill, 2013) Most practitioners said that they would not tell people with more severe dementia their diagnosis as they would not understand, and their rights and wishes no longer come into account.…”

“…There is variability in how the diagnosis is communicated terms of who gives the diagnosis, who is told, and what terms are used (Kissel andCarpenter, 2007, Moore andCahill, 2013).…”