Disclosure Of Dementia Research Articles

Dementia Specialty Care Clinicians' Perspectives on Their Role in the Dementia Diagnostic Process and Diagnostic Disclosure.

Delivering a diagnosis of Alzheimer's disease and related dementias (ADRD) can be challenging not just for patients and families, but also for clinicians. Our objective was to understand dementia specialty care clinicians' perspectives on their role in diagnosis and diagnostic disclosure in dementia. Qualitative interviews with clinicians from a specialty tertiary dementia care center focused on practices, challenges, and opportunities addressing patient and caregiver needs in dementia. Data was analyzed by an interdisciplinary team using thematic analysis. The 16 participants included behavioral neurologists, social workers, neuropsychologists, and nurses. Themes included the value of providing an accurate diagnosis, the timing and challenges of delivering a diagnosis, the central focus on diagnosis alongside the need for more education on care management, and the role of the interdisciplinary team. We identified areas for improvement and strengths that can be built upon or adapted to other settings, including providing clinicians in specialty and primary care settings more guidance and support when diagnostic challenges arise, strengthening interdisciplinary teamwork, and making dementia diagnosis and care more accessible.

Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed

BackgroundBiomarker 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 textThis 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.ConclusionsThis 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.

Perspectives on disclosure of the dementia diagnosis among primary care physicians in Japan: a qualitatively driven mixed methods study

BackgroundThe number of dementia patients in Japan is projected to reach seven million by 2025. While modern ethicists have largely reached the conclusion that full disclosure of dementia serves the best interest of patient, the implications of disclosure of a dementia diagnosis remains an underexplored area of research in Japan. The purpose of this study was to explore primary care physicians’ perspectives relative to the practice of disclosure of the dementia diagnosis.MethodsIn this qualitatively driven mixed methods project, we conducted semi-structured interviews with 24 primary care physicians using purposeful sampling to identify rural and urban representation. All interview recordings were transcribed verbatim and analyzed thematically. The research team iteratively conducted discussions of the concepts as they emerged until reaching thematic saturation. The summary was distributed to the participants for member checking and we incorporated their feedback into the final analysis.ResultsOf 24 participants, 12 practice in rural areas and 12 practice in urban/suburban areas. Participants’ attitudes varied in whether or not to disclose dementia diagnosis to the patients, and in the level of clarity of the name and the prognosis of the disease. Participants who were more comfortable in practicing disclosure were communicating collectively to the patients and their family members and those who were less comfortable practicing disclosure were concerned about patients’ feelings and had negative perceptions given the insidious progression of the disease.ConclusionWe found substantive individual differences in the approach to disclosure of the diagnosis of dementia and the level of comfort among primary care physicians. More dialogue about this issue and training to equip primary care physicians lacking confidence in their approach may be required.

Discourse Features Among Providers, Patients, and Companions and Their Effect on Outcomes of Dementia Diagnosis Disclosure.

Receiving a diagnosis of dementia has major implications. Although protocols for disclosing difficult information have been developed for other health conditions, no such evidence-based method exists for dementia. As a step toward that goal, this study analyzed the discourse within dementia diagnosis disclosure sessions to identify conversational features associated with psychological outcomes. The Roter Interaction Analysis System (RIAS) was used to code the discourse among patients, their companions, and providers during 84 dementia diagnosis disclosure sessions following an initial evaluation at an Alzheimer's Disease Research Center. Providers dominated the conversation in terms of overall time spent talking. With more severe dementia, patients spoke less and companions spoke more. Provider-positive rapport building was associated with lower patient depression and anxiety following the disclosure session. Patient-positive rapport building was associated with higher companion anxiety, but only when the patient was not suspected to have dementia. No associations were found between other types of discourse and patient or companion psychological outcomes. A relatively small amount of positive rapport building by providers can lead to reduced distress following dementia disclosure. Dementia disclosure best practices should emphasize patient-centered communication techniques in order to minimize psychological distress following diagnosis.

The diagnostic disclosure of dementia: an ethnographic exploration

Giving adequate diagnostic information is considered to be fundamental in dementia care. An important question is how the diagnostic disclosure in dementia actually takes place. The aim of this explorative ethnographic study was therefore to provide insight into the disclosure practice of medical specialists. For this study, 22interviews performed by seven medical specialists were analyzed.The results of this study show that the observed doctors are direct and explicit in disclosing the diagnosis. Actual (medical) information about the diagnosis and the performed investigations is provided. The main areas for improvement are involving the patient in the conversation, align your language to the lifeworld of the patient and his/her significant other(s), avoiding the use of medical jargon, discussing the consequences of the diagnosis for daily life, and explicitly recognizing the emotional and existential challenges associated with the disclosure. In providing further information, doctors could discuss emotional and existential support more specifically.

Diagnosis disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis

Diagnosis disclosure in dementia is a complex area that results in positive and negative outcomes for both clinicians and patients. Eight clinicians and seven patients were interviewed about their recent experience of either giving or receiving a diagnosis of dementia. Interview transcripts were analysed using interpretative phenomenological analysis. The analysis revealed two higher order themes: Hiding from the Truth and The Social Environment: Help or Hindrance? Both clinicians and patients experience avoidance in relation to the diagnosis. The results support a psychosocial model of dementia and highlight the need for flexible follow up interventions that both recognise patients' use of avoidance and denial as coping strategies and facilitate social support. The social environment can also assist and hamper clinicians' efforts to help their patients. Future research is needed to elucidate optimal conditions for facilitating patients' uptake of positive coping strategies.

Preferences of older people for early diagnosis and disclosure of Alzheimer's disease (AD) before and after considering potential risks and benefits

Studies suggest that most people support screening for and disclosure of dementia, but it is not clear whether respondents have reflected on the benefits and risks of diagnosis. In this study, preferences, rated on a 7-point Likert scale, for diagnosis, disclosure and screening for AD were measured before and after discussion of the potential benefits and hazards of diagnosis in 132 hospital and community subjects in Galway, Ireland. At baseline the percentages with a positive attitude (Likert rating of 5–7) were 79.6% for diagnosis, 85.7% for disclosure and 59.3% for screening. On follow-up, there was no significant change in disclosure responses (12 more positive, 18 more negative, 102 unchanged (p=0.2), 78.1% positive attitude) while there were significant declines in ratings for diagnosis (11 more positive, 27 more negative, 94 unchanged (p=0.03), 69.1% with positive attitude) and screening (10 more positive, 35 more negative, 87 unchanged (p<0.0001), 42.1% positive attitude). In conclusion, although most people want to ‘know’ if they have AD, there is a diminishing degree of support from disclosure to diagnostic assessment to screening. Preferences for diagnosis and screening decline when respondents have the opportunity to consider the consequences of their decision.

Evidence-based care of older people with suspected cognitive impairment in general practice: protocol for the IRIS cluster randomised trial

BackgroundDementia is a common and complex condition. Evidence-based guidelines for the management of people with dementia in general practice exist; however, detection, diagnosis and disclosure of dementia have been identified as potential evidence-practice gaps. Interventions to implement guidelines into practice have had varying success. The use of theory in designing implementation interventions has been limited, but is advocated because of its potential to yield more effective interventions and aid understanding of factors modifying the magnitude of intervention effects across trials. This protocol describes methods of a randomised trial that tests a theory-informed implementation intervention that, if effective, may provide benefits for patients with dementia and their carers.AimsThis trial aims to estimate the effectiveness of a theory-informed intervention to increase GPs’ (in Victoria, Australia) adherence to a clinical guideline for the detection, diagnosis, and management of dementia in general practice, compared with providing GPs with a printed copy of the guideline. Primary objectives include testing if the intervention is effective in increasing the percentage of patients with suspected cognitive impairment who receive care consistent with two key guideline recommendations: receipt of a i) formal cognitive assessment, and ii) depression assessment using a validated scale (primary outcomes for the trial).MethodsThe design is a parallel cluster randomised trial, with clusters being general practices. We aim to recruit 60 practices per group. Practices will be randomised to the intervention and control groups using restricted randomisation. Patients meeting the inclusion criteria, and GPs’ detection and diagnosis behaviours directed toward these patients, will be identified and measured via an electronic search of the medical records nine months after the start of the intervention. Practitioners in the control group will receive a printed copy of the guideline. In addition to receipt of the printed guideline, practitioners in the intervention group will be invited to participate in an interactive, opinion leader-led, educational face-to-face workshop. The theory-informed intervention aims to address identified barriers to and enablers of implementation of recommendations. Researchers responsible for identifying the cohort of patients with suspected cognitive impairment, and their detection and diagnosis outcomes, will be blind to group allocation.Trial registrationAustralian New Zealand Clinical Trials Registry: ACTRN12611001032943 (date registered 28 September, 2011).

Diagnosis and disclosure of dementia – A comparative qualitative study of Irish and Swedish General Practitioners

Objectives: To explore the attitudes of Irish and Swedish General Practitioners (GPs) to the diagnosis and disclosure of dementia to patients; to investigate GP under-graduate/post-graduate training in dementia; to examine the post-diagnostic support services available to GPs in both countries and to investigate the extent to which dementia is perceived as stigmatising. Methods: A cross-national exploratory qualitative design was used. In-depth interviews were conducted with five Irish and four Swedish GPs. Interviews were transcribed, translated, thematically coded and categorised. Results: Both Irish and Swedish GPs unequivocally considered the early diagnosis of dementia important but neither group was proactive in making a diagnosis. Both groups relied heavily on family members or patients to bring to their attention memory loss and cognitive impairment problems. Most GPs reported a reluctance to diagnose and several acknowledged going to considerable lengths to avoid using the word ‘dementia’. The Swedish GPs had more exposure to dementia-specific training, saw the value in training and were generally very satisfied with post-diagnostic dementia services available to patients, while Irish GPs were less likely to have undergone training, were more equivocal about its value and were very dissatisfied with the community services available. Conclusion: Despite the presence of very adequate post-diagnostic support services for people recently diagnosed with dementia, the majority of Swedish GPs like their Irish counterparts displayed therapeutic nihilism and were reluctant to speak overtly to their patients about their dementia. Dementia continues to be a stigmatising illness for both Irish and Swedish GPs.

The transition to dementia – individual and family experiences of receiving a diagnosis: a review

Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia. This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included. Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns. There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term "Alzheimer's disease" appears to have more negative connotations than the word "dementia".

Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice'

BackgroundDespite 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.MethodsTo identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out.ResultsInterviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patient's perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively.ConclusionThis exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.

Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis

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.

The impact of diagnostic disclosure in dementia: a qualitative case analysis

The aim of this study was to give an in-depth description of the impact of disclosure of the diagnosis of dementia on a patient and the patient's partner. Grounded theory interview study. Analysis of the interviews revealed that disclosure had an impact on three key domains: awareness of dementia, interpersonal relationship and social relationships. Disclosure was perceived as a confirmation of the pre-test ideas of both patient and carer. Formal disclosure of dementia was especially relevant for the carer in reconsidering her response to the patient's changed behavior. Receiving the diagnosis of dementia can be considered as a crucial moment in the process of becoming aware of the changes in one's life. Moreover, disclosure marks a new phase in the process of caring by the caregiver.

Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians.

This study examined attitudes of caregivers and physicians toward assessing and diagnosing dementia, with an emphasis on how a diagnosis is disclosed. 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. 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. 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. Addressing diagnostic disclosure as part of physician education programs on dementia is recommended.

Disclosing a diagnosis of dementia: a systematic review.

The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed. To review empirical data regarding diagnostic disclosure in dementia. Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis. Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers. Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure.

Diagnostic disclosure in dementia: an opportunity for intervention?

To find out from people with dementia what they were worried about in relation to their diagnosis, and how they changed their behaviour in relation to these worries.Design. Consecutive case series of people with early dementia presenting for neuropsychological assessment. People's ability to engage in talking about dementia was assessed by asking three standardised questions. Two measures of cognitive function, the MMSE and MEAMS were given to all. Those who could engage were asked two open-ended questions in relation to what they worried about and how learning they had dementia had affected them. The commonest worries related to fear of others finding out, fears of social embarrassment, long term dependency needs and not being listened to. Commonest effects were social withdrawal and hypervigilance for evidence of cognitive failures. People with dementia who know their diagnosis have worries which effect their behaviour in a way likely to result in low self-esteem, self-stigmatisation and impaired quality of life.