Dementia Diagnosis Disclosure (original) (raw)
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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.
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.
Aging & Mental Health, 2018
Objectives: The objective of this review was to identify, appraise and synthesise qualitative research that explores the experience of the disclosure of a dementia diagnosis from the perspectives of clinicians, patients and carers. Method: A systematic search of four databases, grey literature and reference lists identified 13 studies, which met the required criteria to be included in the review. All were appraised using a quality appraisal tool. Data were extracted and synthesised using a meta-ethnographic approach. Results: Five key themes were developed from an interpretation of the results: the clinician's approach; how to tell people the diagnosis is dementia; the importance of the clinician offering hope; level of understanding; and who should attend the disclosure meeting. The process can be improved through a compassionate clinician offering hope, answers to patient and carer questions, and written and/or visual information to support understanding of the diagnosis. These features could be included in guidance to clinicians. There was a large amount of variance in the quality of the studies. Future qualitative research could focus on clinician compassion, giving hope, the management of dynamics within sessions, supporting information and follow-up sessions. Conclusion: Clinical practice can be informed by a body of literature but there is much work to be done to develop evidence-based detailed guidance for improving the dementia diagnosis experience for all parties, and supporting clinicians to manage inherent tensions in this process. Further research is required on this topic to addresses the shortcomings highlighted in this review.
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.
The Gerontologist, 2004
Purpose: This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. Design and Methods: Seventeen focus group interviews were conducted with caregivers or physicians from three sites; 52 caregivers participated in nine interviews (three each at the three sites), and 39 physicians participated in eight interviews (three each at two sites; two at one site). Structured interview protocols were used to assess diagnostic disclosure, first reactions, and suggestions for improving the diagnostic process. Results: Caregivers recounted a highly negative emotional response to the disclosure, whereas many physicians reported that families handled the information well. Caregivers expressed a range of preferences for how the diagnosis should have been disclosed, from a direct approach to having the physician ease them into the results. Implications: Whenever possible, physicians should consult with the patient and family at the outset of the diagnostic process to better understand their preferences for diagnostic disclosure.
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.
Daring to tell: the importance of telling others about a diagnosis of dementia
Ageing and Society, 2014
ABSTRACTLearning to live with a diagnosis of dementia is a complex process. Being able to talk about the diagnosis to others represents a major challenge for some people with dementia. This study explores the experiences of people with dementia, and members of their families, around the task of informing others during the six months immediately following their diagnosis of dementia. Five people with dementia living in the community, and their immediate family members, were recruited into an ethnographic study. Data were collected through recorded interviews and participant observation, and were analysed through a grounded theory method within a continuing iterative process. Findings suggest that participants recognised the need to tell others about their diagnosis but these conversations were difficult to initiate and manage, and hindered the processing of emotions. Findings are discussed in relation to implications for practice.
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.