Relevant bibliographies by topics / Dementia disclosure

Academic literature on the topic 'Dementia disclosure'

Author: Grafiati
Published: 10 December 2022
Last updated: 29 January 2023

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Journal articles on the topic "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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Dissertations / Theses on the topic "Dementia disclosure"

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Priestley, Charlotte. "The experience of diagnostic disclosure in dementia." Thesis, University of Sheffield, 2014. http://etheses.whiterose.ac.uk/6842/.

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Elson, Paul. "Breaking the news to carers that their relative suffers from dementia : an exploratory study." Thesis, Bangor University, 1995. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.318071.

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Mahamed, Zuhura. "You are happy and safe : a discourse analysis of a diagnostic disclosure of dementia." Thesis, University of Birmingham, 2014. http://etheses.bham.ac.uk//id/eprint/5532/.

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Research indicates that the way in which a clinical diagnosis is delivered impacts on the quality of life post diagnosis. This study explores local and global discursive influences on diagnostic feedback of dementia diagnosis across two NHS memory assessment services. Eight feedback sessions were audio-recorded over a three month period. The recordings were transcribed and analysed using a discourse analytic approach. The transcripts were analysed in terms of their interpersonal and wider discourse features and the ways in which meanings were constructed in the delivery of a dementia diagnosis. The findings suggest that carers, clients and practitioners construct dementia as largely a memory problem, drawing on wider discourses which associates memory with the mind, and that there are interpersonal advantages in downplaying the range of cognitive difficulties that dementia involves. Clinical implications such as post diagnosis procedures and the scope for future research examining the diagnostic delivery methods of different health professionals are presented.
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Alexander, C. M., A. Martyr, L. D. Gamble, S. A. Savage, Catherine Quinn, R. G. Morris, and L. Clare. "Does awareness of condition help people with mild-to-moderate dementia to live well?" 2021. http://hdl.handle.net/10454/18607.

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Yes
People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.
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Book chapters on the topic "Dementia disclosure"

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Frederiksen, Kristian Steen, and Gunhild Waldemar. "Disclosure of Diagnosis in MCI and Dementia." In Management of Patients with Dementia, 57–72. Cham: Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-77904-7_4.

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Zygouris, Stelios, and Magda Tsolaki. "Greece." In Dementia Care: International Perspectives, 173–80. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780198796046.003.0023.

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In Greece, there is an ongoing effort for the creation of a national dementia plan. In 2014, a national dementia observatory was established after appropriate legislation was implemented. National and local Alzheimer’s associations have developed an ongoing collaboration with the health ministry and other regulatory authorities in order to draft a national dementia plan and promote the necessary changes that will lead to improved services for dementia patients and caregivers. This chapter provides an outlook on dementia care in Greece. It outlines the diagnostic process and issues related to disclosure of the diagnosis and various aspects of competence assessment, including mental, functional, financial, driving, and personality competences, as well as issues related to advance directives and end-of-life decisions. Management and treatment of dementia in Greece is also outlined. An overview of available pharmacological treatments is presented.
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Zhu, Yunshu, Ting Song, and Ping Yu. "Developing Methods to Evaluate Content Quality of Dementia Websites." In Studies in Health Technology and Informatics. IOS Press, 2021. http://dx.doi.org/10.3233/shti210750.

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With the popularity of the Internet, consumers are likely to resort to websites for dementia information. However, they may not have the knowledge or experience in distinguishing quality information from opinion pieces. This study investigated the developing methods, instruments and parameters for evaluating the content quality of dementia websites. By reviewing 18 existing instruments from the relevant literature, we identified four developing methods – questionnaire survey, automatic evaluation, Delphi method and focus group discussion. These instruments include six parameters – reliability, currency, readability, disclosure, objectivity and relevance – to evaluate the content quality. With the significant social and economic impact of dementia, developing specific instruments to measure the content quality of dementia websites is necessary.
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Gonçalves-Pereira, Manuel, and António Leuschner. "Portugal." In Dementia Care: International Perspectives, 219–30. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780198796046.003.0029.

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Dementia care in Portugal presents a mixed balance of strengths and important problems and challenges. This chapter begins by highlighting the scarcity of health service data on dementia, within a rapidly changing and complex array of health and social care systems. Public, private, and third-sector services are not integrated enough to fully meet the needs of people with dementia and their families. Despite examples of good standards in dementia care, some complex challenges still need tackling. Portugal does not have a National Dementia Plan, although formal efforts are being made and a general strategy has been proposed. The chapter briefly discusses leading issues, while highlighting that any selection of goals and the feasibility of achieving them are constrained by a shortage of resources. Taking the need to improve timely diagnosis and integrated formal services as an example, the exact role of primary care is one of the primary topics for discussion. In short, there are three aspects which Portugal does well in terms of dementia care: (1) every person with dementia has access to emergency services and, in principle, to primary care services within the public National Health Service; (2) there are examples of high-quality standards in clinical dementia care, mainly in urban centres, and an increasing interest from the social sector, non-governmental organizations, and private institutions in community or institutional social care; and (3) there is increasing interest in dementia-related service research, as well as in psycho-geriatric training. For the future, first, primary care should be more involved in early diagnosis of dementia and its appropriate disclosure, as well as in other areas, e.g. treatment monitoring in collaboration with specialized care, counselling and support, and monitoring caregivers’ health. Second, the complex bio-psycho-social needs in dementia should be better met through improvement of: timely access to community formal services or specialized accommodation when necessary; ‘dementia-friendly’ communities and health/social units (e.g. general hospitals, given the multimorbidity in people with dementia); management of behavioural and psychological symptoms of dementia (with more emphasis on non-pharmacological approaches, and less on antipsychotics); informal caregivers’ support, ensuring minimum standards of information, counselling, psycho-education, and other family interventions; and legal procedures, access to new technologies, and decent end-of-life care. Finally, gaps should be bridged between health and social care, fostering care coordination and case management in every phase of dementia (with standardization of dementia care processes, e.g. definition of the roles of professionals).
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Hawkes, Christopher H., Kapil D. Sethi, and Thomas R. Swift. "Dementia." In Instant Neurological Diagnosis, 347–58. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199361953.003.0013.

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This chapter emphasizes the value of preliminary observations in making a provisional diagnosis of dementia. Significant aspects of the history are detailed, such as head injury or brain hemorrhage that could lead to hydrocephalus or superficial siderosis. Diagnostic clues are given that facilitate identification of the posterior cortical variant of Alzheimer’s disease, characterized by progressive decline in visuospatial, visuoperceptual, literacy, and praxic skills. Emphasized is the importance of temporal pattern of disease, manifesting as episodic confusion and dementia progressing over a period of months. Further clues are outlined to facilitate identification of frontotemporal dementia variants, including semantic dementia, the behavioral variant, progressive nonfluent aphasia, and logopenic aphasia. The value of physical examination is stressed as it may disclose an underlying structural lesion.
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Hawkes, Christopher H., Kapil D. Sethi, and Thomas R. Swift. "Dementia and Cognition." In Instant Neurological Diagnosis, 370–84. Oxford University Press, 2019. http://dx.doi.org/10.1093/med/9780190930868.003.0013.

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This chapter emphasizes the value of preliminary observations in making a provisional diagnosis of dementia. Significant aspects of the history are detailed, such as head injury or brain hemorrhage that could lead to hydrocephalus or superficial siderosis. Handles are given that facilitate identification of Alzheimer’s disease and its mimics, such as the posterior cortical variant. The importance of temporal pattern of disease is emphasized. Further Handles are outlined for frontotemporal dementia variants. The value of physical examination is stressed as it may disclose an underlying structural lesion.
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