Journal of Geriatric Mental Health

: 2022  |  Volume : 9  |  Issue : 2  |  Page : 63--65

Disclosing the diagnosis of dementia: Is it something to bother about?

Sandeep Grover 
 Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh, India

Correspondence Address:
Dr. Sandeep Grover
Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh

How to cite this article:
Grover S. Disclosing the diagnosis of dementia: Is it something to bother about?.J Geriatr Ment Health 2022;9:63-65

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Grover S. Disclosing the diagnosis of dementia: Is it something to bother about?. J Geriatr Ment Health [serial online] 2022 [cited 2023 Feb 5 ];9:63-65
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Informing the patients about their diagnosis is an integral part of patient care. Compared to earlier, when the practice of disclosure of diagnosis was guided by the ethical principle of beneficence (i.e., helping the patient) and doing no harm, it is now guided by the patient's autonomy and right.[1] Hence, a diagnostic disclosure is now considered part and parcel of medical practice. Recently, the issue of disclosure of the diagnosis of dementia has received significant attention in developed countries.

The disclosure of diagnosis in patients with dementia has been researched considerably over the years. Some of the older studies that focused on the attitude of geriatric psychiatrists and geriatricians suggest that patients with severe dementia are rarely informed about their diagnosis. However, those with mild-to-moderate dementia are informed about their diagnosis.[2],[3] Other studies involving psychiatrists also suggest that they usually do not inform about the diagnosis to the majority of their patients with dementia.[4] When informed, more than half of the psychiatrists do not inform about the specific diagnosis, and patients are provided with incomplete information.[5] A recent meta-analysis of available studies that included data from 54 studies that were either qualitative or quantitative, mixed method or intervention studies, reported that only 34% of the general practitioners and nearly half (48%) of the specialists usually disclose the diagnosis of dementia to the patients. However, the majority of the general practitioners (89%) and specialists (97%) informed about the diagnosis to the family members of persons with dementia.[5] When asked about the information provided, most clinicians used vague terms such as “confusion, memory problems, slowing down due to aging” rather than mentioning dementia.[6]

It is suggested that the barriers to disclosure of the diagnosis of dementia at the clinicians level include the beliefs of potential harm outweighing the benefit, being stressful for the patient, perceived negative effect of disclosure on the therapeutic alliance, lack of effective treatments, family believing that knowing the diagnosis will increase difficult behavior at home, countertransferential feelings and avoidance of own sense of loss and futility, lack of skills, and training to do the same.[7] Other barriers to the diagnostic disclosure include fear of withdrawing hope, precipitating distress and adverse emotional reactions, the uncertainty of diagnosis, disapproval by the caregivers, and clinicians' belief that patients may not be able to understand the diagnosis due to cognitive decline.[8]

In terms of caregivers' views about the disclosure of a diagnosis of dementia, there is a lack of consensus on the disclosure of the diagnosis to the patients. Some studies suggest that more than half of the caregivers expressed that they would have preferred to be told about the diagnosis initially alone. In contrast, about one-third expressed that they would like to be told about the diagnosis in the presence of the patient.[9] However, other studies suggest that most caregivers would not like the patient to be informed about the diagnosis.[10] A review of the literature published about a decade ago that included 265 articles suggested that most of the family members wanted to be informed about the diagnosis of their relatives. Some of the relatives expressed that knowing about the diagnosis helped them prepare for the future and improve their quality of life and relationship with the patient.[11] Studies involving persons with dementia also, in general, favored disclosure of the diagnosis of dementia, and disclosure of diagnosis was not associated with catastrophic reactions. Instead, it was associated with reduced anxiety levels.[11] Studies involving clinicians also report that most clinicians support disclosing the diagnosis, but they usually do not practice the same.[11]

In contrast to the clinician's approach, most elderly persons wanted to know about their diagnosis of Alzheimer's dementia (AD).[12],[13] In addition, most married subjects wanted the diagnosis to be disclosed to their spouse.[12] In terms of reasons stated by the elderly to know their diagnosis of AD, the most commonly stated reason included advance/financial planning and getting a second opinion on the diagnosis.[12] However, some of the studies suggest that the diagnosis of dementia and mild cognitive impairment are associated with an increased risk of suicide behavior (i.e., attempted and completed suicide).[14],[15],[16]

Based on all this evidence, it can be concluded that all the stakeholders, i.e., the patients, caregivers, and clinicians, agree that patients with dementia should be told about their diagnosis. Further, it can be said that available evidence suggests that disclosure of the diagnosis of dementia to patients is associated with better psychological consequences for both patients and caregivers. Hence, it cannot be overemphasized that clinicians should disclose the diagnosis of dementia to the patients and caregivers.

Some of the authors have focused on the communication pattern of diagnostic disclosure in dementia and encourage the use of a patient-centered approach that involves trying to understand the knowledge and misconceptions of the patients about the diagnosis and clarifying the same, identifying the patients at early stages, focus on management goals, providing realistic hope and emphasizes to the patient that despite the illness they will not be abandoned concerning the management of dementia.[17]

Other authors equate the disclosure of the diagnosis of dementia with the disclosure of a cancer diagnosis. Accordingly, similar proposals for breaking the bad news have been suggested for discussing the diagnosis of dementia with the patients and the caregivers. Among the various models of breaking the bad news in patients with cancers, one of the popular models is that of SPIKES. The SPIKES stands for: setting up the interview, assessing the patient's perception, obtaining the patient's invitation, providing knowledge and information, and addressing the patient's emotions with empathic responses and strategy and summary.[8] The authors suggested slight modifications of principles used for patients with cancer to suit the needs of patients with dementia.[8]

Other authors suggest that for disclosure of the diagnosis of dementia, the clinicians should prepare themselves and consider disclosure as a process rather than a one-time event, providing information in consonance with the need of the patients and the caregivers. Further, the clinicians should prepare themselves adequately with knowledge about dementia, treatment options, course, and prognosis before disclosing the diagnosis. For beginning the disclosure process, it is often helpful to assess the patients' and caregivers' awareness and knowledge about the various symptoms, possible diagnosis, treatment, and treatment outcomes. Clinicians should remember that the assimilation of information will take time, and they may have to repeat the same information repeatedly. While providing the diagnosis, the clinicians should provide a clear diagnosis as this may help the caregivers understand the patient's behavior and reduce their negative attitude toward the patient. It is also vital to allow questions from the patients and the caregivers, and the clinicians should make a note of the emotional responses of the patients and the caregivers about the diagnosis.[7] It is crucial to have the disclosure of diagnosis in an objective manner and in a language that is understandable to the patient and the caregivers. If one looks at the suggested Dementia-SPIKES models many of these issues are not addressed by this model.

If one looks at the various models (i.e., SPIKES model, P-SPIKES model, BREAKS model, GUIDE model, FINE approach, SHARMAN model, Kay's ten-step approach, A 7-step approach for end-of-life news, and serious illness conversation guide), of the breaking the bad news described in the context of cancers, some of the principles from these models can be incorporated into the SPIKES-Dementia model for disclosure of the diagnosis of dementia. Based on this the principles that should be followed for diagnosis disclosure are listed in [Table 1].{Table 1}

The clinicians should prepare themselves for the diagnostic disclosure, which should involve familiarizing themselves with the relevant clinical information and having sufficient time in hand so that the session is not done hurriedly. In terms of setting up the interview, it is suggested to have a close family member at the time of disclosure. Although it is suggested that it should be done in the presence of multidisciplinary team members involving physicians, nurses, social workers, or psychologists, this may not be feasible in resource-poor settings, in a country like India. In such a setting, clinicians themselves to take the responsibility for disclosing the diagnosis. Before moving further, an attempt must be made to develop a good therapeutic alliance with the patient and the caregivers before disclosing the diagnosis. An attempt must be made to assess the patient's and caregivers' perception about the severity of dementia, the capacity of the patients, knowledge of the patient/caregiver about the symptoms and possible diagnosis, possible treatment modalities, course, and outcome of illness. This information can often guide the pace at which the information can be disclosed and also guide the need to reinforce the information for better assimilation. Before moving forward, the clinicians should ask the patients and the caregivers about their understanding of the illness and how much they want to know. However, there can be other guiding forces behind deciding how much to disclose. Once the clinicians have enough information, they should provide adequate and factual information to the patient and the caregivers in a language that the patient and the caregiver understand, and they should avoid the use of jargon medical jargon use words and examples which can clearly convey the meaning of the illness, its course, and prognosis to the patients and the caregivers. While providing information, it is important to understand that patients with dementia should be directly addressed rather than just focusing on the caregivers only. If required the information can be provided separately to the patients and the caregivers, as the pace at which they may be able to assimilate the information will be different. While providing information to the patient and the caregivers, the clinicians can use appropriate examples to convey the message to the patient and the caregivers. Providing information should not be a one-time event. Instead, clinicians should strive to seek feedback and reinforce and clarify the information. Disclosure of the information could elicit negative emotions among the patients, and the caregivers and the clinicians should be prepared for the same. The clinicians should allow for silence. Once this stage is over, the clinicians should attempt to help the patient and the caregiver move forward and plan the next course of action. This can also involve providing printed material, if available, and letting them know about other resources for improving their knowledge about the illness. The final summary step should include summarizing the information and future planning to improve the care and outcome of patients and caregivers of persons with dementia. In subsequent follow-up sessions, feedback should be sought and required information should be provided and reinforced.


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