Dementia diagnosis and disclosure: a dilemma in practice (original) (raw)
Related papers
Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice
BMC Health Services Research, 2008
Background: Despite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours.
Disclosure of the diagnosis of dementia: Benefits and risks
Annals of Geriatric Education and Medical Sciences, 2018
According to the estimates in the World Alzheimer Report 2015, there are 46.8 million people living with dementia worldwide in 2015. The number of older people living in higher income countries is projected to increase by just 56%, 138% in upper middle income countries, and 185% in lower middle income countries and by 239% in low income countries, during 2015-2050. Ensuring early diagnosis becomes a priority strategy which benefits the person with dementia and their caregiver. Despite the improvements, currently in England approximately two thirds of the people with dementia do not have a formal diagnosis. In contrast there are no clear strategies and priorities in developing and low income countries where the burden is quite high. Everybody has a "right to know" about the diagnosis, condition, information, and advice available to the people with dementia. There are associated risks and benefits of disclosing a diagnosis of dementia, both to the person with dementia and their carer. This paper aims to critically examine risks and benefits of disclosing the diagnosis of dementia. A relevant literature search was conducted to critically discuss the benefits and risks of disclosure of diagnosis. The present paper has categorised and critically discussed the benefits and risks of disclosure. The author concludes that the benefits of disclosure outweigh the risks of disclosure. Disclosure of diagnosis can improve the quality of life of people with dementia.
Disclosure of the diagnosis of dementia
Alzheimer's & Dementia, 2007
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.
Alzheimer Disease & Associated Disorders, 2007
This paper reports the findings of a descriptive, exploratory, qualitative study of patient and caregiver perspectives of the disclosure of a dementia diagnosis. Data were collected at 3 points in time: (1) the disclosure meeting, (2) patient and caregiver interviews, and (3) focus group interviews. Thirty patient-caregiver dyads participated in the disclosure meetings at the Geriatric Day Hospital at the Ottawa Hospital, Ottawa, Canada. Within a week of the disclosure of diagnosis, 27 (90%) patients and 29 (97%) caregivers were interviewed in their homes, and 12 caregivers participated in 3 focus group interviews within 1 month after the disclosure meeting. Most patients and caregivers said they preferred full disclosure of the diagnosis. Patients expressed satisfaction with the physician providing the diagnosis and with their caregivers being present at the disclosure meeting, however, wanted more information about their condition. Caregivers provided further insight regarding the patient response, and suggested the need to emphasize hope in the face of a difficult diagnosis, the use of progressive disclosure to allow the person (and caregivers) to prepare, and the provision of detail about the disease and its progression.
Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis
Aging & Mental Health, 2006
Adequate diagnostic information can be considered a basic intervention in dementia care. However, clear diagnostic disclosure in dementia is not yet regular practice and the evidence regarding patients' preferences for or against disclosure is scarce. The aim of this study was to give an in-depth description of the impact of receiving the diagnosis of dementia, both on patients and the patients' proxies. The method used was the design of a grounded theory interview study. Analysis of the interviews revealed that disclosure had an impact on three key domains: awareness of dementia, partnership, and social relationships. Most patients and carers reported that they had experienced the disclosure of the diagnosis as a confirmation of their assumptions. A minority of patients and carers felt threatened and shocked by the diagnosis, because they did not expect it. The findings of this analysis challenge current opinions and practice about diagnostic disclosure like obstacles anticipated by clinicians such as inducing negative feelings and causing harm. Disclosure of the diagnosis of dementia can generally be carried out without introducing stress for the patient or carer and facilitates guidance. Therefore regular practice should include the careful planning and performance of diagnostic disclosure.
Dementia Diagnosis Disclosure: A Study of Patient and Caregiver Perspectives
Alzheimer Disease & Associated Disorders, 2007
This paper reports the findings of a descriptive, exploratory, qualitative study of patient and caregiver perspectives of the disclosure of a dementia diagnosis. Data were collected at 3 points in time: (1) the disclosure meeting, (2) patient and caregiver interviews, and (3) focus group interviews. Thirty patient-caregiver dyads participated in the disclosure meetings at the Geriatric Day Hospital at the Ottawa Hospital, Ottawa, Canada. Within a week of the disclosure of diagnosis, 27 (90%) patients and 29 (97%) caregivers were interviewed in their homes, and 12 caregivers participated in 3 focus group interviews within 1 month after the disclosure meeting. Most patients and caregivers said they preferred full disclosure of the diagnosis. Patients expressed satisfaction with the physician providing the diagnosis and with their caregivers being present at the disclosure meeting, however, wanted more information about their condition. Caregivers provided further insight regarding the patient response, and suggested the need to emphasize hope in the face of a difficult diagnosis, the use of progressive disclosure to allow the person (and caregivers) to prepare, and the provision of detail about the disease and its progression.
Alzheimer's & Dementia, 2013
Background: The disclosure of Alzheimer's disease presents a great challenge because it entails emotionally charged communication about a life-threatening, incurable, and stigmatized disease. Although a broad consensus has evolved regarding the potential benefits of early disclosure of the diagnosis, little is known about how these recommendations are actually implemented, and there is limited published research about the process issues of the disclosure. Purpose: (1) To systematically obtain and evaluate the relevant literature on disclosing a diagnosis of dementia, with special attention to process issues, and (2) to summarize current research findings and draw conclusions for future research and clinical care in this area. Methods: A systematic review of the literature on disclosure of dementia during the first decade of the 21st century was conducted. Results: From 265 articles retrieved, 47 were included in the review. Although the studies published in the first years of the decade were concerned with assessing attitudes and preferences of those involved in the process of disclosing the diagnosis, those of the last years have focused more on communication and other process issues. Conclusions: A conceptual development over time in the area is observed in which in the first years, thought processes begin as an ethical debate among clinicians and researchers about the topic of "truth telling" and dementia, continue as a search of the opinions of those involved in the process of disclosure about truth telling, and evolve (observed more recently) into an examination of how this truth telling is delivered.
On telling the truth to patients with dementia
Western Journal of Medicine, 2000
On telling the truth to patients with dementia ABSTRACT ⅷ Objectives To discover what dementia sufferers think is wrong with them, what they have been told and by whom, and what they wish to know about their illness. ⅷ Background Ethical guidelines regarding telling truth appear to be equivocal. Declarations of cognitively intact subjects, attitudes of family members, and current psychiatric practice all vary, but no previous research has been published concerning what patients with dementia would like to know about their diagnosis and prognosis. ⅷ Design Questionnaire study of patients' opinions. ⅷ Setting Old Age Psychiatry Service in Worcester, United Kingdom. ⅷ Participants Thirty consecutive patients with dementia. ⅷ Results The quality of information received has been poor, and many patients have no opportunity to discuss their illness with anybody. Despite that, almost half of the participants in this study had adequate insight, and most declared that they would like to know more about their predicament. ⅷ Conclusions Although many patients would like to know the truth, the rights of those who do not want to know should also be respected. Therefore, the diagnosis of dementia should not be routinely disclosed, but just as in other disorders, health care professionals should seek to understand their patients' preferences and act appropriately according to their choice.
BMC Medical Ethics
Background: Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text: This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries (USA, Canada and Germany) regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment (MCI) to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. Conclusions: This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on (risk) disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons' needs and wishes regarding risk communication.