Disclosure of the diagnosis of dementia

Abstract

Most ethical guidelines strongly promote disclosure of a diagnosis of dementia to the affected individual, based on the principle of autonomy. Nevertheless, codes of medical ethics allow for various interpretations of this issue and surveys of clinical practice illustrate that such disclosure is by no means the rule. We argue that diagnostic disclosure for persons with dementia must be considered a process that begins when cognitive impairment is first suspected and that evolves over time as information is obtained. Whenever possible and appropriate, this process should involve not only the affected individual but also their family and/or other current or potential future care providers. Once a diagnosis is established it should be disclosed in a manner consistent with the expressed wishes of the patient, using an individualized patient-centered approach that maintains the individual's personal integrity. Diagnostic disclosure of dementia is a process that may require additional time as well as follow-up or referral to other specialists. We recommend that a progressive disclosure process be employed to address issues including: remaining diagnostic uncertainty, treatment options, future plans, financial planning, assigning power of attorney, wills and "living wills", driving privileges and the need for eventual driving cessation, available support services, and potential research participation. The potential for adverse psychological consequences to diagnostic disclosure must be assessed and these should be addressed through education and support of the patient and their family/caregivers throughout the diagnostic disclosure process. At present, few data are available regarding patients' perspectives on the diagnostic disclosure process and its consequences. This limitation and the apparent discrepancies in physician and caregiver opinions about the disclosure process, make it incumbent upon health care professionals to evaluate the diagnostic disclosure process within their practice.

Linguistic features of power dynamics in triadic dementia diagnostic conversations

“…We chose this situation because 1) diagnostic conversations involve both information giving and receiving and are likely to evoke expressions of power [1], and 2) the delivery of a diagnosis is a critical moment in dementia care, when dominance can set the tone for future interactions [12]. We studied two linguistic manifestations of power.…”

Screening for cognitive impairment, Alzheimer's disease and other dementias: Opinions of European caregivers, payors, physicians and the general public

“…Some older citizens have expressed concerns about being labeled cognitively impaired (8) and some people with a diagnosis of dementia have found it distressing and stigmatising (7,(9)(10)(11)(12). However, the perspectives of older people at risk of becoming "a person with dementia" and of people with dementia have been significantly neglected in empirical research (7,13,14). Recently, older patients' attitudes towards dementia screening were measured in primary care clinics in the United States and the United Kingdom (15).…”

Diagnosis and treatment of dementia: 4. Approach to management of mild to moderate dementia

“…4 from the section on ethical issues in dementia -disclosure, www.cccdtd.ca). 5 Disclosure can lead to an open dialogue between the patient, his or her family or caregiver, and health care providers about a number of important issues such advance planning, the option of pharmacotherapy and research participation. Although the potential for an adverse psychological reaction is often used as justification not to disclose the diagnosis, a recent study found that this was not the case for most patients and caregivers.…”

“…The question is not "if" the diagnosis of dementia should be disclosed but rather "how" and "when" to do so. 5 Disclosure has been identified by primary care physicians as a particularly difficult aspect of dementia care. 19 Unfortunately there is little research on how disclosure of a dementia diagnosis is actually managed in clinical practice.…”

“…The case scenario that we have provided highlights a range of the issues that frequently emerge during the management of a patient with dementia due to Alzheimer disease at this stage. [3][4][5][6] Because we cannot cover all 48 recommendations from the consensus conference dealing with this topic, we have focused on those that were selected by the family physicians who participated in the consensus conference as being particularly relevant for primary medical care (for a listing of all 48 recommendations see Appendix 2, available at www.cmaj.ca /cgi/content/full/179/8/787/DC2).…”