Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice (original) (raw)
Related papers
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.
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.
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.
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.
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'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.