Disclosing a Diagnosis of Dementia : Recommendations for a Person - Centred Approach

Correspondence may be directed to [email protected]. Background With the rise in the prevalence of dementia and its critical impact on health care resources, there has been a global call for a more proactive approach to the care of persons with dementia (PWDs), with a special focus on the practices of primary care physicians (PCPs). This renewed interest has resulted in a proliferation of international consensus position papers and clinical practice guidelines (CPGs) reaffirming the importance of timely and responsive primary dementia care. For a multitude of ethical, clinical, and psycho-social reasons, CPGs advocate for an early diagnosis and effective diagnostic disclosure as the first steps in the optimal management of dementia. It is believed that an informative and sensitive diagnostic disclosure can provide an opportunity for PWDs and their caregivers to more proactively participate in their treatment/management plans and better adjust to the illness, both emotionally and practically, even though they may be initially distressed by the bad news (Table 1). However, the evidence from several international studies and review papers shows wide variability in the attitudes and practices of PCPs vis-à-vis all dimensions of dementia diagnostic disclosure. Many PCPs withhold the diagnosis in a significant number of cases, and they fail to properly follow up with PWDs and caregivers. Furthermore, the manner and content of the diagnostic disclosure are often incongruent with the best practice recommendations and/or the expectations of PWDs/caregivers. The studies that have targeted PWDs/caregivers have identified the following aspects of the disclosure practices as the main sources of their dissatisfaction: (1) the physicians’ reticence to make a precise diagnosis and/or to explain the diagnosis/prognosis; (2) the insensitive and abrupt manner of disclosure; (3) the limited opportunities provided to address the emotional needs of PWDs/caregivers in order to deal with the diagnosis; (4) the inadequate discussion of treatment/management options; and, finally, (5) the lack of post-diagnosis followup. Many PCPs admit having difficulty disclosing a diagnosis of dementia, particularly to the patient, and identify communication about the diagnosis as one of the most difficult aspects of dementia care. There is evidence that physicians’ hesitations are, at least partly, underpinned by their (1) uncertainties about the diagnostic accuracy; (2) assumptions about the inability of PWDs to understand/retain the diagnosis; (3) desire to protect the PWDs/caregivers from the emotional distress of receiving a highly feared and stigmatized diagnosis; (4) a lack of time and communication skills to effectively break the news; (5) nihilistic attitudes about the therapeutic benefits of interventions; and (6) an anticipation of adverse reactions to the diagnosis and the risk of damaging the longstanding doctor-patient-family relationship. This discomfort is reflected in a number of physician behaviours during the diagnostic disclosure aimed at “dulling” the news and downgrading its negative connotation, including the common use of euphemistic and vague terms (e.g., “confusion” and “memory problems”) to avoid a frank discussion of the specific medical diagnosis, incomplete disclosure (especially, withholding information about the likely prognosis), and the use of diversion tactics (e.g., changing the subject, premature reassurance, quick wrap-up of conversation, etc.). Recognizing the complexity of dementia diagnostic disclosure, many experts have advocated for physician training in effective disclosure practices, as well as the development of detailed, practical, and evidence-based guidelines to promote appropriate behaviours. The goal of this article is to provide practical recommendations for a person-centred approach to dementia diagnostic disclosure in order to help PCPs better prepare for and manage this critical encounter with their PWDs and their caregivers.