Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: a systematic review and Meta-ethnographic synthesis (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.
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.
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.
Dementia (London, England), 2018
The aim of this study is to systematically review practitioners' practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as 'memory problems' are more often used to describe dementia than medical terms. Practitioners' decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communicati...
Dementia diagnosis and disclosure: a dilemma in practice
Journal of Clinical Nursing, 2004
Dementia diagnosis and disclosure: a dilemma in practice Background. Providing the individual with the correct information about their diagnosis can help maximize the patient's autonomy, however empirical evidence identifies inconsistencies in the practice of diagnosis disclosure in dementia. Within health care, ethical problems arise frequently and these present a challenge for health care professionals. This challenge can also give rise to conflict when professionals are torn between respecting autonomy, doing good and avoiding paternalism. Aim. The aim of this paper is to highlight the need for interprofessional collaboration when faced with ethical dilemmas such as diagnosis disclosure in the care of adults with dementia. The use of a dialogue and supplementary notes are used to explore crucial ethical points raised by health care professionals. Relevance to clinical practice. The increasing rate of dementia and the need for patients to have access to timely and appropriate information about their diagnosis has prompted much debate about disclosing the diagnosis with the individual who has dementia. This paper may also be useful for educational purposes when used as a framework for discussion/debate in student nurse education. Conclusion. Ethical theories are of benefit in assisting the members of the multidisciplinary team to reach a morally defensible decision. Making ethical decisions in practice can cause the nurse concern. While there is no complete set of 'rules' that can provide an answer to each ethical dilemma, it is of immense value to nurses working within the multidisciplinary team to possess a sound knowledge of ethical positions in order to analyse the many complex situations that nurses encounter. The pivotal role of the health care professional is to work in collaboration and engage in sharing the diagnosis with the patient. It is hoped that this paper will stimulate and encourage further debate and study regarding the individual with dementia and diagnosis disclosure. Recommendations for practice, education, policy and research will also be highlighted.