Journal articles: 'Dementia disclosure'

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Byszewski, Anna M., Frank J. Molnar, Faranak Aminzadeh, Marg Eisner, Fauzia Gardezi, and Raewyn Bassett. "Dementia Diagnosis Disclosure." Alzheimer Disease & Associated Disorders 21, no. 2 (April 2007): 107–14. http://dx.doi.org/10.1097/wad.0b013e318065c481.

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Nielsen, T. Rune, Birthe Hjorth Svensson, Gitte Rohr, Hanne Gottrup, Karsten Vestergaard, Peter Høgh, and Gunhild Waldemar. "The process of disclosing a diagnosis of dementia and mild cognitive impairment: A national survey of specialist physicians in Denmark." Dementia 19, no. 3 (May 27, 2018): 547–59. http://dx.doi.org/10.1177/1471301218777443.

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Background Although general recommendations for diagnostic disclosure of dementia are available, little is known about how these recommendations are implemented. The aim of the current study was to investigate the process and content of dementia diagnostic disclosure meetings, and to compare key aspects of disclosing a diagnosis of dementia and mild cognitive impairment. Method A total of 54 specialist physicians in Danish dementia diagnostic departments completed an online survey on their practices regarding diagnostic disclosure of dementia and mild cognitive impairment. The influence of respondent characteristics was assessed, and differences on key aspects of disclosing a diagnosis of dementia and mild cognitive impairment were analyzed. Results The results suggest that among Danish specialist physicians, there is a general consensus regarding the organization of diagnostic disclosure meetings. However, differences in employed terminology and information provided when disclosing a dementia diagnosis were evident. Significant differences were present on key aspects of the diagnostic disclosure of dementia and mild cognitive impairment. For instance, 91% would use the term dementia during diagnostic disclosures compared to just 72% for mild cognitive impairment. Conclusion The range of practices reflected in the present study confirms the complexity of diagnostic disclosure and highlights the importance of preparation and follow-up strategies to tailor the disclosure process to the needs of individual patients with dementia and their caregivers. Due to earlier diagnosis of neurodegenerative disorders, more research is urgently needed on this aspect of the diagnostic process, especially to develop evidence-based models for the disclosure of mild cognitive impairment.

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Pinner, Gill, and Walter Pierre Bouman. "To Tell or Not to Tell: On Disclosing the Diagnosis of Dementia." International Psychogeriatrics 14, no. 2 (June 2002): 127–37. http://dx.doi.org/10.1017/s1041610202008347.

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Research suggests there has been a cultural change in the disclosure of diagnosis with most evidence held in cancer literature. This article reviews how disclosure of diagnosis relates to the field of dementia. Practitioners' attitudes and practice are being discussed, as are the attitudes and views of carers, peer groups, and patients. Practitioners show great variations in practice, with only around 50% of clinicians regularly telling patients with dementia their diagnosis. The majority of carers also appear to prefer the diagnosis to be withheld from the patient with dementia. However, most practitioners and carers would wish to know themselves if they had the illness. Although in contrast, studies on the views of elderly peer groups show that the vast majority wishes to be fully informed, views of patients with dementia regarding the area of disclosure are still lacking. Factors influencing the decision to disclose the diagnosis, including the degree of certainty of the diagnosis of dementia, the degree of insight of the patient, and the severity of the dementia, are investigated. The advantages and disadvantages of disclosure and the ethical issues are examined, as well as when or whether and how to disclose the diagnosis of dementia. Flexible guidelines regarding the process of disclosure are introduced.

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Pinner, Gill, and Walter Pierre Bouman. "What should we tell people about dementia?" Advances in Psychiatric Treatment 9, no. 5 (September 2003): 335–41. http://dx.doi.org/10.1192/apt.9.5.335.

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This article reviews what we should tell patients and carers about dementia. The attitudes and views of patients, carers and peer groups are examined, as is the practice of doctors and other professionals working in dementia care. Factors influencing the decision to disclose the diagnosis of dementia, including the degree of certainty of the diagnosis, the degree of insight of the patient and the severity of the dementia are considered. Advantages, disadvantages and ethical issues of disclosure are discussed, as well as when or whether and how to disclose the diagnosis. Flexible guidelines regarding the process of disclosure are introduced.

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Ellison, James M., and Sehba Husain-Krautter. "Disclosure of a Dementia Diagnosis:." Delaware Journal of Public Health 8, no. 2 (May 2022): 76–77. http://dx.doi.org/10.32481/djph.2022.05.009.

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Johnson, Rebecca A., and Jason Karlawish. "A review of ethical issues in dementia." International Psychogeriatrics 27, no. 10 (June 10, 2015): 1635–47. http://dx.doi.org/10.1017/s1041610215000848.

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ABSTRACTDementia raises many ethical issues. The present review, taking note of the fact that the stages of dementia raise distinct ethical issues, focuses on three issues associated with stages of dementia's progression: (1) how the emergence of preclinical and asymptomatic but at-risk categories for dementia creates complex questions about preventive measures, risk disclosure, and protection from stigma and discrimination; (2) how despite efforts at dementia prevention, important research continues to investigate ways to alleviate clinical dementia's symptoms, and requires additional human subjects protections to ethically enroll persons with dementia; and (3) how in spite of research and prevention efforts, persons continue to need to live with dementia. This review highlights two major themes. First is how expanding the boundaries of dementias such as Alzheimer's to include asymptomatic but at-risk persons generate new ethical questions. One promising way to address these questions is to take an integrated approach to dementia ethics, which can include incorporating ethics-related data collection into the design of a dementia research study itself. Second is the interdisciplinary nature of ethical questions related to dementia, from health policy questions about insurance coverage for long-term care to political questions about voting, driving, and other civic rights and privileges to economic questions about balancing an employer's right to a safe and productive workforce with an employee's rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.

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Fisk, John D., B. Lynn Beattie, Martha Donnelly, Anna Byszewski, and Frank J. Molnar. "Disclosure of the diagnosis of dementia." Alzheimer's & Dementia 3, no. 4 (October 2007): 404–10. http://dx.doi.org/10.1016/j.jalz.2007.07.008.

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Pinner, Gill, and Walter Pierre Bouman. "Attitudes of Patients With Mild Dementia and Their Carers Towards Disclosure of the Diagnosis." International Psychogeriatrics 15, no. 3 (September 2003): 279–88. http://dx.doi.org/10.1017/s1041610203009530.

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Objective: To determine the attitudes of patients with mild dementia and their carers towards the disclosure of diagnoses of cancer and dementia and whether there are differences between these groups. To determine whether any major adverse events occurred following disclosure of diagnosis of dementia. Design: A prospective study followed by a retrospective case-note study after 1 year. Participants and Setting: Fifty patients with mild dementia and their carers were recruited from a memory clinic in Nottingham, UK, and an old-age psychiatrist, using a semistructured questionnaire, separately interviewed them. Measures: Questions related to whether patients and their carers wished to be told diagnoses of cancer and dementia; the reasons for this; whether they would want treatment and make use of predictive testing if available were included. At 1-year follow-up whether antidepressants had been prescribed and whether any catastrophic reaction had occurred following disclosure of diagnosis. Results: An overwhelming majority of patients with mild dementia wished to be informed of their diagnosis (92%); even more (98%) of the same patient sample reported wanting disclosure of a hypothetical diagnosis of cancer. A higher proportion (98%) of carers would wish to be told if they were to develop either dementia or cancer. All patients and carers would like access to treatment for dementia. A total of 88% of patients and 86% of carers would make use of a predictive test of Alzheimer's disease. Before receiving a diagnosis of mild dementia, only 28% of patients had insight that they may have dementia. Only a quarter (26%) of carers did not want the doctor to disclose the diagnosis of dementia to the patient. After 1 year, 6% of the original sample had developed a depressive illness requiring antidepressant treatment and no major incidents had occurred following disclosure of diagnosis. Conclusions: There has been a growing debate on whether patients with dementia should be informed of their diagnosis. Until recently, little was known about the views of patients themselves. This study shows that the vast majority of patients with mild dementia wish to be fully informed. Despite increasing awareness, a quarter of carers still do not wish their relative to be informed, though wish to be informed if they themselves were to develop the illness. This is significantly lower, however, than previously reported, suggesting a shift in attitudes. This study adds support to the weight of evidence that disclosure of a diagnosis of dementia does not cause depression or any irreversible harm to the patient.

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Derksen, Els, Myrra Vernooij-Dassen, Freek Gillissen, Marcel Olde-Rikkert, and Philip Scheltens. "The impact of diagnostic disclosure in dementia: a qualitative case analysis." International Psychogeriatrics 17, no. 2 (April 25, 2005): 319–26. http://dx.doi.org/10.1017/s1041610205001316.

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Objective: 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.Methods: Grounded theory interview study.Results: 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.Discussion: 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.

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Shigeta, Masahiro. "Diagnosis disclosure and pharmacotherapy of mild dementia." Nippon Ronen Igakkai Zasshi. Japanese Journal of Geriatrics 44, no. 3 (2007): 315–17. http://dx.doi.org/10.3143/geriatrics.44.315.

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Robinson, Louise, Alan Gemski, Clare Abley, John Bond, John Keady, Sarah Campbell, Kritika Samsi, and Jill Manthorpe. "The transition to dementia – individual and family experiences of receiving a diagnosis: a review." International Psychogeriatrics 23, no. 7 (February 1, 2011): 1026–43. http://dx.doi.org/10.1017/s1041610210002437.

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ABSTRACTBackground: 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.Methods: 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.Results: 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.Conclusions: 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”.

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van den Dungen, Pim, Lisa van Kuijk, Harm van Marwijk, Johannes van der Wouden, Eric Moll van Charante, Henriette van der Horst, and Hein van Hout. "Preferences regarding disclosure of a diagnosis of dementia: a systematic review." International Psychogeriatrics 26, no. 10 (June 16, 2014): 1603–18. http://dx.doi.org/10.1017/s1041610214000969.

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AbstractBackground:Studies in memory clinics suggest that the majority of patients would like to know of a diagnosis of dementia. It is less clear what preferences are in the community. Our objective was to review the literature on preferences regarding disclosure of a diagnosis of dementia and to assess key arguments in favor of and against disclosure.Methods:Systematic search of empirical studies was performed in Pubmed, Embase, and Psycinfo. We extracted preferences of individuals without cognitive impairment (general population; relatives of dementia patients; and physicians) and preferences of individuals referred to a memory clinic or already diagnosed with dementia. A meta-analysis was done using a random effects model. Our main conclusions are based on studies with a response rate ≥75%.Results:We included 23 articles (9.065 respondents). In studies with individuals without cognitive impairment, the pooled percentage in favor of disclosure was 90.7% (95%CI: 83.8%–97.5%). In studies with patients who were referred to a memory clinic or already diagnosed with dementia, the pooled percentage that considered disclosure favorable was 84.8% (95%CI: 75.6%–94.0%). The central arguments in favor of disclosure pertained to autonomy and the possibility to plan one's future. Arguments against disclosure were fear of getting upset and that knowing has no use.Conclusions:The vast majority of individuals without and with cognitive impairment prefers to be informed about a diagnosis of dementia for reasons pertaining to autonomy.

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Peixoto, Vanessa Giffoni de Medeiros Nunes Pinheiro, Rosiane Viana Zuza Diniz, and Clécio de Oliveira Godeiro Junior. "SPIKES-D: a proposal to adapt the SPIKES protocol to deliver the diagnosis of dementia." Dementia & Neuropsychologia 14, no. 4 (December 2020): 333–39. http://dx.doi.org/10.1590/1980-57642020dn14-040001.

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ABSTRACT. Dementia is a life-threatening and stigmatizing condition, with devastating impacts on the patient's personal identity and caregivers. There are many barriers to an effective diagnosis disclosure of dementia, including fear of causing distress, uncertainty of diagnosis, caregivers’ objection and lack of training in communication skills in undergraduate medical schools. Although some studies have been published on how to help physicians deliver an Alzheimer's disease diagnosis, no specific protocol has been published yet. The SPIKES protocol is a didactic approach designed to deliver bad news related to cancer, but it has been used globally and in a variety of clinical settings, including the teaching of communication skills to medical students and residents. It is known, however, that the cognitive impairment of Alzheimer's disease and other dementias may limit the understanding of the diagnosis’ complexity; hence, a few adaptations of this model were made after reviewing the current literature on dementia diagnosis disclosure. The suggested SPIKES-D protocol seems to encompass current guidelines about the communication of the diagnosis of dementia, keeping its didactic approach on breaking bad news and helping fulfill the gaps in this topic.

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Wollney, Easton N., Carma L. Bylund, Noheli Bedenfield, Monica Rosselli, Rosie E. Curiel-Cid, Marcela Kitaigorodsky, Ximena Levy, and Melissa J. Armstrong. "Clinician approaches to communicating a dementia diagnosis: An interview study." PLOS ONE 17, no. 4 (April 14, 2022): e0267161. http://dx.doi.org/10.1371/journal.pone.0267161.

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Background Individuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter. Method Investigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data. Results Fifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as “memory disorder.” Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education. Conclusions Diverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.

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Monaghan, Catherine, and Ann Begley. "Dementia diagnosis and disclosure: a dilemma in practice." Journal of Clinical Nursing 13, s1 (March 2004): 22–29. http://dx.doi.org/10.1111/j.1365-2702.2004.00922.x.

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Campbell, Kellie H., Carol B. Stocking, Gavin W. Hougham, Peter J. Whitehouse, Deborah D. Danner, and Greg A. Sachs. "Dementia, Diagnostic Disclosure, and Self-Reported Health Status." Journal of the American Geriatrics Society 56, no. 2 (February 2008): 296–300. http://dx.doi.org/10.1111/j.1532-5415.2007.01551.x.

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Gauthier, Serge, and Pedro Rosa-Neto. "Disclosure of results to participants in dementia research." Nature Reviews Neurology 9, no. 11 (October 22, 2013): 608–9. http://dx.doi.org/10.1038/nrneurol.2013.213.

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Husband, H. J. "Diagnostic disclosure in dementia: an opportunity for intervention?" International Journal of Geriatric Psychiatry 15, no. 6 (2000): 544–47. http://dx.doi.org/10.1002/1099-1166(200006)15:6<544::aid-gps241>3.0.co;2-8.

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Raicher, Irina, and Paulo Caramelli. "Diagnostic disclosure in Alzheimer's disease: A review." Dementia & Neuropsychologia 2, no. 4 (December 2008): 267–71. http://dx.doi.org/10.1590/s1980-57642009dn20400006.

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Abstract Although growing, the literature on research into attitudes of general and specialized physicians towards disclosing the diagnosis of dementia and Alzheimer's disease (AD), or the current practice on AD disclosure, remains limited. Moreover, information is also scarce on what caregivers, or indeed patients themselves, wish to know with regard to their diagnosis. The goal of the present article was to present a review of the current available literature on the topic of truth telling in dementia, especially in AD. The studies discussed in this review were mainly conducted in Europe, particularly in the United Kingdom, as well as the United States. Disclosure of AD diagnosis is not a common practice among physicians. In the clinical context, the discussion on diagnosis disclosure can be valuable for improving the care of AD patients and their families.

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Engelhardt, Eliasz, Carla Tocquer, Charles André, Denise Madeira Moreira, Ivan Hideyo Okamoto, and José Luiz de Sá Cavalcanti. "Vascular dementia Cognitive, functional and behavioral assessment Recommendations of the Scientific Department of Cognitive Neurology and Aging of the Brazilian Academy of Neurology. Part II." Dementia & Neuropsychologia 5, no. 4 (December 2011): 264–74. http://dx.doi.org/10.1590/s1980-57642011dn05040004.

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Abstract Vascular dementia (VaD) is the most prevalent form of secondary dementia and the second most common of all dementias. The present paper aims to define guidelines on the basic principles for treating patients with suspected VaD (and vascular cognitive impairment - no dementia) using an evidence-based approach. The material was retrieved and selected from searches of databases (Medline, Scielo, Lilacs), preferentially from the last 15 years, to propose a systematic way to assess cognition, function and behavior, and disease severity staging, with instruments adapted for our milieu, and diagnosis disclosure. The present proposal contributes to the definition of standard diagnostic criteria for VaD based on various levels of evidence. It is noteworthy that only around half of the population of patients with vascular cognitive impairment present with dementia, which calls for future proposals defining diagnostic criteria and procedures for this condition.

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Kohl, Gianna, Mauricio Molinari Ulate, Jem Bhatt, Jennifer Lynch, Katrina Scior, and Georgina Charlesworth. "Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention." Innovation in Aging 5, Supplement_1 (December 1, 2021): 587. http://dx.doi.org/10.1093/geroni/igab046.2254.

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Abstract Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.

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Moran, Mark. "New Dementia Measures Address Disclosure of Diagnosis to Patients." Psychiatric News 52, no. 10 (May 19, 2017): 1. http://dx.doi.org/10.1176/appi.pn.2017.5b12.

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Derksen, Els, Myrra Vernooij-Dassen, Philip Scheltens, and Marcel Olde-Rikkert. "A model for disclosure of the diagnosis of dementia." Dementia 5, no. 3 (August 2006): 462–68. http://dx.doi.org/10.1177/147130120600500313.

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Iliffe, Steve, Louise Robinson, Carol Brayne, Claire Goodman, Greta Rait, Jill Manthorpe, and Peter Ashley. "Primary care and dementia: 1. diagnosis, screening and disclosure." International Journal of Geriatric Psychiatry 24, no. 9 (September 2009): 895–901. http://dx.doi.org/10.1002/gps.2204.

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Shelton, Wayne, Evelyn Tenenbaum, Kevin Costello, and David Hoffman. "Empowering Patients with Alzheimer’s Disease To Avoid Unwanted Medical Care: A Look At The Dementia Care Triad." American Journal of Alzheimer's Disease & Other Dementiasr 34, no. 2 (December 13, 2018): 131–36. http://dx.doi.org/10.1177/1533317518817614.

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Patients with Alzheimer’s disease and other types of dementia with acute medical problems, who have lost capacity and are without advance directives, are at risk of being over treated inhospitals. To deal with this growing demographic and ethical crisis, patients with dementia need to plan for their future medical care while they have capacity to do so. This article will examine the role of each member of the dementia care triad and how to empower the patient to participate in planning future medical care. A case will be made that physicians have the same professional disclosure obligations to dementia patients as they do to all other capable patients with terminal illnesses. Because there is little consensus about what facts should be included in a diagnostic disclosure, this article will offer a proposal to empower newly diagnosed patients with dementia with capacity to plan for their future medical care.

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Zaleta, Alexandra K., and Brian D. Carpenter. "Patient-Centered Communication During the Disclosure of a Dementia Diagnosis." American Journal of Alzheimer's Disease & Other Dementiasr 25, no. 6 (June 17, 2010): 513–20. http://dx.doi.org/10.1177/1533317510372924.

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Erickson, Claire, Nathaniel Chin, Carey Gleason, Sterling Johnson, and Lindsay Clark. "Research Participant Interest in Alzheimer’s Disease Biomarker Disclosure." Innovation in Aging 4, Supplement_1 (December 1, 2020): 880. http://dx.doi.org/10.1093/geroni/igaa057.3251.

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Abstract Researchers can characterize the pathophysiological progression of Alzheimer’s disease (AD) even in the absence of symptoms. As we better understand the role of biomarker accumulation in the clinical manifestation of AD, disclosing personal biomarker information will become increasingly relevant. Yet, interest and preferences for AD biomarker disclosure are not well understood. We developed a 30-minute phone survey to gather information from Black and white participants on likelihood to enroll in biomarker disclosure studies, reasons for enrolling, and potential outcomes following a hypothetical positive result. Data were collected from cognitively healthy participants (n=334, mean age=64.8±7.7, 45% Black) enrolled in the Wisconsin Alzheimer’s Disease Research Center or Wisconsin Registry for Alzheimer’s Prevention. 49.7% of participants were very or extremely likely to enroll in an AD biomarker disclosure study. This result varied by biomarker method, with about half the sample very or extremely likely to enroll in PET scan disclosure (45.5%), fewer likely to enroll in cerebrospinal fluid disclosure (32.2%), and a majority likely to enroll in blood-based biomarker disclosure (86.2%). The most important reasons for learning biomarker results included informing lifestyle changes to help prevent dementia (82.9% responded very or extremely important) and knowing more about personal AD risk (69.1% responded very or extremely important). These results suggest that as biomarker collection method burden decreases, willingness to participate in a biomarker disclosure study increases. Further, personal dementia prevention and risk are a strong motivator for learning biomarker results. Moving forward, these results may inform AD biomarker protocol development.

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Vince, A., C. Clarke, and E. L. Wolverson. "The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study." International Psychogeriatrics 29, no. 1 (October 17, 2016): 93–104. http://dx.doi.org/10.1017/s1041610216001484.

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ABSTRACTBackground:Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia.Methods:This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA).Results:Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care).Conclusions:Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.

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Smith, André P., and B. Lynn Beattie. "Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences." Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 28, S1 (May 2001): S67—S71. http://dx.doi.org/10.1017/s0317167100001220.

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Background:Informing patients and families about the diagnosis of Alzheimer’s disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members.Methods:This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessment for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINCDS-ADRDAcriteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to eight weeks of the assessment. Data collection methods included observation of the assessment and the family conference as well as in-depth home interviews with family members and with each patient whenever feasible. The interviews were transcribed verbatim and coded for recurrent themes.Results:A total of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. The disclosure of a diagnosis of probable AD brought on an experience of relief in three families, marking the end of a lengthy period of confusion about the nature of memory problems. Patients diagnosed with possible AD and their families interpreted how indicative the diagnosis was of the presence of the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to minor depression. The disclosure of a diagnosis of no dementia did not produce the anticipated relief. Two patients continued to believe their memory problems were caused by the early onset of AD or some other “organic” problem.Interpretation:This study reveals that disclosure of the diagnosis of AD to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularly in instances where the assessment results are ambiguous.

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Mate, Karen E., Constance D. Pond, Parker J. Magin, Susan M. Goode, Patrick McElduff, and Nigel P. Stocks. "Diagnosis and disclosure of a memory problem is associated with quality of life in community based older Australians with dementia." International Psychogeriatrics 24, no. 12 (July 4, 2012): 1962–71. http://dx.doi.org/10.1017/s1041610212001111.

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ABSTRACTBackground: Identification of factors associated with quality of life (QoL) in people having dementia will help develop strategies for maintenance and improvement of patient QoL. This study examined the predictors of QoL in a community-dwelling population aged 75 years and over, with or without dementia.Methods: This was a cross-sectional study involving 169 GPs and 2,028 patients. Patients were interviewed to collect information on personal circumstances. Several instruments were administered including the WHOQOL-BREF (quality of life outcome measure), Geriatric Depression Scale, GPAQ (satisfaction with GP care), and the CAMCOG-R (cognitive function). Patients with a CAMCOG-R score < 80 were allocated to the dementia group. GPs provided an independent clinical judgment of cognitive function for each of their participating patients.Results: The dementia group had significantly lower QoL scores in all four domains of the WHOQOL-BREF (all p ≤ 0.002). The GDS score was negatively correlated with all four domains in the non-dementia group and with physical, psychological, and environmental QoL in the dementia group (all p < 0.001). Satisfaction with GP communication was positively associated with psychological QoL in the dementia group and all domains in the non-dementia group. Participants in the dementia group who had been given a diagnosis of a memory problem had significantly higher physical (2.05, 95% CI 0.36 to 3.74) and environmental (2.18, 95% CI 0.72 to 3.64) QoL.Conclusions: Satisfaction with GP communication is associated with a higher QoL in their older patients. Diagnosis and disclosure of memory problems is associated with better QoL in people with dementia. Clinicians should not be deterred from discussing a memory diagnosis and plans for the future with patients.

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Byszewski, Anna M., Frank Molnar, Faranek Aminzadeh, and Marg Eisner. "P1-428: Dementia diagnosis disclosure: Results of patient and caregiver perspectives." Alzheimer's & Dementia 2 (July 2006): S223. http://dx.doi.org/10.1016/j.jalz.2006.05.807.

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Strupp, Michael. "Dementia: Predicting its risk, APOE effects and disclosure of APOE genotype." Journal of Neurology 256, no. 10 (August 26, 2009): 1784–86. http://dx.doi.org/10.1007/s00415-009-5278-0.

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Arkles, Rachelle, Claire Jankelson, Kylie Radford, and Lisa Jackson Pulver. "Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience." Dementia 19, no. 2 (June 7, 2018): 397–415. http://dx.doi.org/10.1177/1471301218776761.

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Dementia in Australia’s Aboriginal and Torres Strait Islander population is an area of significant health and community concern. In this article, we use a hermeneutic mode of interpretation to deepen understanding of experience and meaning in dementia for family carers of older Aboriginal people in urban Australia. Specifically, we draw from the hermeneutic concept of “world disclosure” to illuminate the dementia experience in three ways: through an artwork of the brain and dementia; through concrete description of the lived relation of caregiving; and through an epochal perspective on the significance of contemporary caregiving in dementia. Using narrative and visual knowledge, this three-fold approach brings to the forefront the importance of ontological and existential meanings which resonate for Aboriginal families in the dementia caregiving experience.

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Lin, Ker-Neng, Yi-Chu Liao, Pei-Ning Wang, and Hsiu-Chih Liu. "Family members favor disclosing the diagnosis of Alzheimer's disease." International Psychogeriatrics 17, no. 4 (September 27, 2005): 679–88. http://dx.doi.org/10.1017/s1041610205001675.

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Background: Past negative attitudes towards patients with Alzheimer's disease (AD) have changed in recent years. However, the disclosure of AD diagnosis to patients and family remains an unresoved issue. In this study, we surveyed the family members of neurological patients in Taiwan for the purpose of assessing their attitudes towards the disclosure of AD diagnosis.Methods: The study sample consisted of family members (150, age range 23–89 years, mean 55.0±14.3) who accompanied patients to a neurology outpatient clinic from September 15 to November 24, 2003. The subjects were given an Attitude Questionnaire on AD Disclosure.Results: An overwhelming majority (93%) of subjects favored disclosure of the diagnosis if, hypothetically, they personally were affected by AD. However, a smaller majority of family members (76%) favored disclosure of the diagnosis to current AD patients. Reasons for favoring disclosure included a patient's or family member's right to know, the possibility of assistance in coping with and understanding dementia, and slowing down the progression of the disease by early treatment, as well as the increased probability of accepting treatment and life activity training. Reasons for favoring the withholding of disclosure included the risk of causing the patient emotional disturbance, worsening the disease, the irrelevance of disclosure to drug therapy, and the possibility of causing suicidal ideation. Subjects' attitudes towards disclosure of AD diagnosis were unaffected by their knowledge of dementia, the presence of a family member with AD, their role as the primary caregiver, the length of time that AD symptoms persisted, and the number of hours per day spent in caring for AD patients.Conclusions: In Taiwan, family members of neurological patients strongly favor being informed and the disclosure of AD diagnosis to the family.

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Wollney, Easton N., Melissa J. Armstrong, Noheli Bedenfield, Monica Rosselli, Rosie E. Curiel-Cid, Marcela Kitaigorodsky, Ximena Levy, and Carma L. Bylund. "Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study." Health Services Insights 15 (January 2022): 117863292211418. http://dx.doi.org/10.1177/11786329221141829.

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The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured interview guide. Transcripts were analyzed thematically. Clinician-reported barriers fit 3 categories: patient and caregiver-related barriers, clinician-related barriers, and barriers related to the triadic interaction. Patient and caregiver-related barriers included lack of social support, misunderstanding the diagnosis, and denial. Clinician barriers included difficulty giving bad news, difficulty communicating uncertainty, and lack of time. Triadic interaction barriers included c hallenges meeting multiple goals or needs and family requests for non-disclosure. Recommendations for best practice included for clinicians to foster relationships, educate patients and family, and take a family-centered approach. Clinicians described recommendations for fostering relationships such as using empathic communication and developing and maintaining connection. Educating patients and families included tailoring communication, explaining how the diagnosis was reached, and following up. Family approaches included meeting with family members prior to delivering the diagnosis and involving the caregiver in the discussion. Findings may inform updated recommendations for best practices when communicating a dementia diagnosis.

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Wolf-Ostermann, Karin, and Jane Flanagan. "Strategies to Design Technology Promoting Social Participation of People With Dementia and Their Caregivers." Innovation in Aging 5, Supplement_1 (December 1, 2021): 587. http://dx.doi.org/10.1093/geroni/igab046.2252.

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Abstract Community-dwelling people with dementia and their caregivers face increasing challenges to active social participation as the condition progresses. Potential difficulties include disclosing the condition, navigating through available support and sustaining interpersonal relationships. Dementia-friendly support services and interventions targeting caregiving dyads can promote social participation. Interventions serve as a communication channel for the dyads to engage, interact and partake in their community. Technology as a facilitator is gaining momentum; increasing evidence suggests that technological solutions contribute to promoting social health for people with dementia and family caregivers. Patient and public involvement and rigorous evaluations of solutions are needed to ensure successful implementation of dementia-friendly technologies. This symposium, presented as a part of the Marie-Curie Innovative-Training-Network action, H2020-MSCA-ITN, grant agreement number 813196, comprises four pertinent presentations. The first presentation outlines the effectiveness of technological interventions to improve social participation of older adults with and without dementia, and barriers and facilitators these interventions present. The second presentation describes disclosure decisions faced by dyads and Patient and public involvement findings on how an existing empowerment intervention supporting disclosure decision-making can transfer to an online environment. The third presentation reports on findings from a study evaluating a tablet-based activation system designed to engage caregiving dyads in social sessions. The final presentation lifts the focus towards how existing online environments can be adapted through dementia-friendly privacy policy agreements, and thereby support social participation of this user group online. Our discussant, Jane Flanagan, synthesizes the presentations and leads a discussion of future directions for policy and practice.

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Merl, Helga, Kathleen Veronica Doherty, Jane Alty, and Katharine Salmon. "Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician." Dementia 21, no. 3 (February 8, 2022): 1050–68. http://dx.doi.org/10.1177/14713012211067882.

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This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad – the person, the carer and the clinician – at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level – for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure.

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Johnson, Jazette, Vitica Arnold, Anne Marie Piper, and Gillian R. Hayes. ""It's a lonely disease": Cultivating Online Spaces for Social Support among People Living with Dementia and Dementia Caregivers." Proceedings of the ACM on Human-Computer Interaction 6, CSCW2 (November 7, 2022): 1–27. http://dx.doi.org/10.1145/3555133.

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People living with dementia as well as dementia caregivers are finding new ways to provide and receive support online. The emerging use of social media platforms-such as TikTok, Clubhouse, and Facebook-by people with dementia and dementia caregivers enables new forms of sharing about stigmatized, poorly understood, and often under-discussed experiences. Building on prior work focused on formal support groups, we report findings from an interview study of how people living with dementia and dementia caregivers provide and receive social support through emerging online spaces and communities. Our analysis reveals that both groups cultivate new online spaces for sharing about the experience of dementia while also navigating tensions surrounding public disclosure of lived experiences, advocacy, education, and the ability to protect and keep private elements of life experiences. We discuss how these groups cultivate online spaces across platforms and contribute to ongoing ethical debates about consent in online communities. We conclude with questions that guide future work on emerging online spaces for supporting people living with dementia and caregivers of people living with dementia.

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Passmore, Michael J. "Neuropsychiatric Symptoms of Dementia: Consent, Quality of Life, and Dignity." BioMed Research International 2013 (2013): 1–4. http://dx.doi.org/10.1155/2013/230134.

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Degenerative forms of dementia are progressive, incurable, fatal, and likely to cause suffering in conjunction with personal incapacity. Timely diagnostic disclosure and counseling can facilitate important advance care planning. The risk of harm associated with neuropsychiatric symptoms (NPS) of dementia often has to be balanced against the risk of harm associated with medication management of NPS. A palliative care framework can help preserve autonomy, quality of life, comfort, and dignity for patients with NPS.

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Opaleye, Davi T. C., Danusa de Almeida Machado, Tatiani Piedade de Campos, and Cleusa Pinheiro Ferri. "P2-544: DEMENTIA IN BRAZIL: PREFERENCES ON DIAGNOSIS DISCLOSURE IN PRIMARY CARE." Alzheimer's & Dementia 14, no. 7S_Part_17 (July 1, 2006): P945. http://dx.doi.org/10.1016/j.jalz.2018.06.1238.

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Rostamzadeh, Ayda, Carolin Schwegler, Silvia Gil-Navarro, Maitée Rosende-Roca, Vanessa Romotzky, Gemma Ortega, Pilar Canabate, et al. "Biomarker-Based Risk Prediction of Alzheimer’s Disease Dementia in Mild Cognitive Impairment: Psychosocial, Ethical, and Legal Aspects." Journal of Alzheimer's Disease 80, no. 2 (March 23, 2021): 601–17. http://dx.doi.org/10.3233/jad-200484.

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Background: Today, a growing number of individuals with mild cognitive impairment (MCI) wish to assess their risk of developing Alzheimer’s disease (AD) dementia. The expectations as well as the effects on quality of life (QoL) in MCI patients and their close others through biomarker-based dementia risk estimation are not well studied. Objective: The PreDADQoL project aims at providing empirical data on effects of such prediction on QoL and at developing an ethical and legal framework of biomarker-based dementia risk estimation in MCI. Methods: In the empirical study, 100 MCI-patients and their close others will be recruited from two sites (Germany and Spain). They receive standardized counselling on cerebrospinal fluid (CSF) biomarker-based prediction of AD dementia and a risk disclosure based on their AD biomarker status. A mixed methods approach will be applied to assess outcomes. Results: The pilot-study yielded a specification of the research topics and newly developed questionnaires for the main assessment. Within this binational quantitative and qualitative study, data on attitudes and expectations toward AD risk prediction, QoL, risk communication, coping strategies, mental health, lifestyle changes, and healthcare resource utilization will be obtained. Together with the normative part of the project, an empirically informed ethical and legal framework for biomarker-based dementia risk estimation will be developed. Conclusion: The empirical research of the PreDADQoL study together with the ethical and legal considerations and implications will help to improve the process of counselling and risk disclosure and thereby positively affect QoL and health of MCI-patients and their close others in the context of biomarker-based dementia risk estimation.

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Post, Stephen G. "Dementia in Our Midst: The Moral Community." Cambridge Quarterly of Healthcare Ethics 4, no. 2 (1995): 142–47. http://dx.doi.org/10.1017/s0963180100005818.

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This article focuses on the elderly patient with a progressive and irreversible dementia, most often of the Alzheimer type. However dementia, the decline in mental function from a previous state, can occur in all ages. For example, if Alzheimer's disease (AD) is the dementia of the elderly, increasingly AIDS is the dementia of many who are relatively young. I will not present the major ethical issues relating to dementia care following the progression of disease from the mild to the severe stages, for I have done this elsewhere. Among the issues included are: presymptomatic testing, both psychological and genetic; responsible diag- nostic disclosure and use of support groups; restrictions on driving and other activities; preemptive assisted suicide; advance directives for research and treatment; quality of life in relation to the use of life-extending technologies; and euthanasia.

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Zou, Yang, Ning Song, Yong-bo Hu, Ying Gao, Yue-qi Zhang, Qian-hua Zhao, Qi-hao Guo, et al. "Caregivers’ attitude toward disclosure of Alzheimer's disease diagnosis in Urban China." International Psychogeriatrics 29, no. 11 (June 29, 2017): 1849–55. http://dx.doi.org/10.1017/s1041610217001132.

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ABSTRACTBackground:Disclosing the diagnosis of Alzheimer's disease (AD) to a patient is controversial. There is significant stigma associated with a diagnosis of AD or dementia in China, but the attitude of the society toward disclosure of such a diagnosis had not been formally evaluated prior to our study. Therefore, we aimed to evaluate the attitude toward disclosing an AD diagnosis to patients in China with cognitive impairment from their caregivers, and the factors that may affect their attitude.Methods:We designed a 17-item questionnaire and administered this questionnaire to caregivers, who accompanied patients with cognitive impairment or dementia in three major hospitals in Shanghai, China. The caregiver's attitude toward disclosing the diagnosis of AD as evaluated by the questionnaire was compared to that of disclosing the diagnosis of terminal cancer.Results:A majority (95.7%) of the 175 interviewed participants (mean 14.2 years of education received) wished to know their own diagnosis if they were diagnosed with AD, and 97.6% preferred the doctor to tell their family members if they were diagnosed with AD. If a family member of the participants suffered from AD, 82.9% preferred to have the diagnosis disclosed to the patient. “Cognitive impairment” was the most accepted term by caregivers to disclose AD diagnosis in Chinese.Conclusion:This study suggests most of the well-educated individuals in a Chinese urban area favored disclosing the diagnosis when they or their family members were diagnosed with AD.

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Milby, Elinor, Gemma Murphy, and Allan Winthrop. "Diagnosis disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis." Dementia 16, no. 5 (October 21, 2015): 611–28. http://dx.doi.org/10.1177/1471301215612676.

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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.

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L, Reshma, Sai Priya Nalluri, and Priya R. Sankpal. "A Deep Learning-Based Approach for Detection of Dementia from Brain Mri." Journal of University of Shanghai for Science and Technology 23, no. 07 (July 9, 2021): 516–29. http://dx.doi.org/10.51201/jusst/21/07177.

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In this paper, a user-friendly system has been developed which will provide the result of medical analysis of digital images like magnetization resonance of image scan of the brain for detection and classification of dementia. The small structural differences in the brain can slowly and gradually become a major disease like dementia. The progression of dementia can be slowed when identified early. Hence, this paper aims at developing a robust system for classification and identifying dementia at the earliest. The method used in this paper for initial disclosure and diagnosis of dementia is deep learning since it can give important results in a shorter period of time. Deep Learning methods such as K-means clustering, Pattern Recognition, and Multi-class Support Vector Machine (SVM) have been used to classify different stages of dementia. The goal of this study is to provide a user interface for deep learning-based dementia classification using brain magnetic resonance imaging data. The results show that the created method has an accuracy of 96% and may be utilized to detect people who have dementia or are in the early stages of dementia.

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Bradford, Andrea, Christina Upchurch, David Bass, Katherine Judge, A. Lynn Snow, Nancy Wilson, and Mark E. Kunik. "Knowledge of Documented Dementia Diagnosis and Treatment in Veterans and Their Caregivers." American Journal of Alzheimer's Disease & Other Dementiasr 26, no. 2 (January 27, 2011): 127–33. http://dx.doi.org/10.1177/1533317510394648.

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We studied perceptions of dementia diagnosis and treatment in patient-caregiver dyads enrolled in a care coordination intervention trial for veterans with dementia. We compared patient and caregiver perceptions of diagnosis and treatment to information in the medical record and assessed concordance between patient and caregiver perceptions. Data were derived from medical record abstraction and structured interviews with 132 patients and 183 caregivers. Most caregivers, but only about one fourth of patients, reported having received information about a diagnosis related to memory loss. Caregivers were more accurate than patients in recalling the patient’s use of memory-enhancing medications. Within dyads there was poor agreement regarding a diagnosis of dementia. Our findings suggest that there is substantial room for improvement in disclosure and education of dementia diagnosis, especially at the level of the patient-caregiver dyad.

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Maguire, Conor P. "Telling the Diagnosis of Dementia: Consider Each Patient Individually." International Psychogeriatrics 14, no. 2 (June 2002): 123–26. http://dx.doi.org/10.1017/s1041610202008335.

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Pinner and Bouman's review article “To Tell or Not to Tell: On Disclosing the Diagnosis of Dementia” (pp. 127–137 in this issue) outlines the pros and cons of diagnosis disclosure to this diagnostic group. It is only over the past 10 years that the question of informing patients with dementia of their diagnosis has become topical, although the hard evidence for and against telling remains sparse, with much of the argument on either side being anecdotal. Paternalism is a common theme of surveys that examine the attitudes of spouse caregivers, relatives, and nonaffected older adults toward telling the diagnosis of dementia (Connell & Gallant, 1996; Erde et al., 1988; Holroyd et al., 1996; Maguire et al., 1996).

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Kihlgren, M., A. Hallgren, A. Norberg, and I. Karlsson. "Disclosure of Basic Strengths and Basic Weaknesses in Demented Patients during Morning Care, before and after Staff Training: Analysis of Video-Recordings by Means of the Erikson Theory of “Eight Stages of Man”." International Journal of Aging and Human Development 43, no. 3 (January 1, 1996): 219–33. http://dx.doi.org/10.2190/y3yl-r51v-mcpc-mw37.

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In the field of care for aging persons, it is commonly understood that personality changes occur in dementia patients. It is reported to be a consistent part of the clinical syndrome and to occur early in the disease. The aim of this study was to investigate if strengths and weaknesses, described by E. H. and J. M. Erikson as basic qualities in the person, could be interpreted in severely demented patients during a caring activity, and if a difference in these qualities could be seen after staff completed a training program in “integrity promoting care.” The morning care of five patients was video-recorded and a phenomenological-hermeneutic analysis of the patient's and staff's interaction was conducted. The findings indicate that the complex qualities of someone's personality are more preserved than could be expected considering the cognitive handicap. It seems, however, that demented patients need a special, supportive environment for their full mental potential to be realized. It is reasonable to assume that, if the staff are given knowledge of how to create a positive climate for the demented patients and the opportunity to implement it, the patients will show a rich pattern of mental reactions in spite of their dementia.

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Schweda, Mark, Anna Kögel, Claudia Bartels, Jens Wiltfang, Anja Schneider, and Silke Schicktanz. "Prediction and Early Detection of Alzheimer’s Dementia: Professional Disclosure Practices and Ethical Attitudes." Journal of Alzheimer's Disease 62, no. 1 (February 6, 2018): 145–55. http://dx.doi.org/10.3233/jad-170443.

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Barrett, Anna M., Margaret Keller, Paula Damgaard, and Russell H. Swerdlow. "SHORT-TERM EFFECT OF DEMENTIA DISCLOSURE: HOW PATIENTS AND FAMILIES DESCRIBE THE DIAGNOSIS." Journal of the American Geriatrics Society 54, no. 12 (December 2006): 1968–70. http://dx.doi.org/10.1111/j.1532-5415.2006.00992.x.

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Journal articles on the topic 'Dementia disclosure'

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