The Experiences of Family Caregivers in Response to a Dementia Diagnosis Disclosure

Background: Dementia is a serious disease that can lead to disability because it impacts the individual’s memory, cognition, behavior, and capacity to perform activities of daily living. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of family caregivers, based on their perspectives, are often unknown. The primary aim of this study was to explore the experiences of family caregivers in response to a dementia diagnosis disclosure and analyze the care needs of caregivers.Methods: A qualitative study conducted in accordance with COREQ guidelines. The grounded theory approach was undertaken in 20 family caregivers of patients with dementia, who were selected using purposive sampling. Data were analysed using the constant comparative method.Results: Diagnostic disclosure: Start the long road of care challenges was identified as the core category of this study, which was defined as describing the experiences of family caregivers of patients with dementia after first being informed of the patients’ diagnosis, which activates their willpower to progress against the disease. Five major categories describing the experiences of family caregivers following a dementia diagnosis was developed: ‘deciding to seek medical attention,’ ‘the moment of disclosure,’ ‘conveying information,’ ‘maintaining the patients’ functioning,’ and ‘receiving support and living well with dementia.’ Subcategories within each major category also emerged.Conclusions: Clear diagnostic disclosure is important for ensuring that positive developments can occur in response to disclosure. Healthcare professionals must develop strategies to prevent disclosure from triggering overreactive emotions from patients with cognitive impairments, assist them in understanding their illness in a tactful manner, and ensure that they understand how to cooperate in any subsequent care plans.

Assessing diagnosis disclosure and concealment in multiple sclerosis: Development and initial validation of the DISCO-MS survey

Background: Individuals with multiple sclerosis (MS) regularly report making strategic decisions about whether to share their diagnosis or keep it a secret; for many, this represents a key stressor. Surprisingly, the impact of disclosure and concealment are understudied in MS and a formal measurement instrument is lacking. We developed the Diagnosis Disclosure and Concealment in MS (DISCO-MS) survey, a self-assessment tool evaluating (1) frequency of concealment behaviors and (2) expected consequences of diagnosis disclosure in persons with MS. Methods: A systematic mixed-methods process was used for the design and initial validation of the DISCO-MS. Associations of DISCO-MS responses to demographics, clinical variables, and mood were examined in 204 participants with MS. Results: The 39-item DISCO-MS shows good psychometric characteristics. Approximately 25% of respondents conceal their diagnosis, particularly in professional settings. Higher concealment behaviors were associated with younger age, shorter disease duration, and lower physical disability. Nearly 50% of respondents believed that talking openly about their diagnosis might have undesirable professional and interpersonal consequences. Younger age, higher depression, and higher anxiety were associated with greater expectations of negative consequences. Conclusion: Development and validation of the DISCO-MS presents the first step toward systematic study of the impact of DISCO on people with MS.

Diagnosis Disclosure Preferences of Cancer Patients in Egypt: A Multi-Institutional Cross-Sectional Study

Background: Although diagnosis disclosure to cancer patients has important roles in cancer care, it is not a routine practice in countries like Egypt. Respecting patients’ autonomy and responding to their preferences are among the factors that should guide the practice of cancer diagnosis disclosure. Objectives: To assess the preferences of Egyptian cancer patients regarding the disclosure of cancer diagnosis and to determine factors that may affect their preferences. Methods: The study included 295 patients aware of their cancer diagnosis from 3 cancer care facilities in Egypt. Patients were asked if they would have preferred to be informed of the diagnosis or not, whom they would have preferred to receive the diagnosis information from, and if they would have preferred to tell their families or not. Results: The vast majority (91%) of the included patients preferred to be informed about their diagnosis, 59% preferred to disclose the diagnosis to their families and 66% preferred to receive the diagnosis information from a physician. In univariate analysis, male gender, higher education level and employment were significantly associated with the preference for disclosure. None of the studied variables associated significantly with the preferences in multivariate analysis. Conclusion: The majority of Egyptian cancer patients in our study preferred to be informed about their diagnosis, which should be respected. The results may help in changing the diagnosis disclosure practice of health care professionals and refuting the misconception of family caregivers about cancer diagnosis disclosure in Egypt and countries with similar culture.

Attitude toward dementia and preferences for diagnosis in Japanese health service consumers

Background Being diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan. Methods Participants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants’ most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference. Results The most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85. Conclusions The findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.