Perceptions of Dementia and Their Implications on Disease Management in Egypt: A Perspective

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Heikal, Aalaa A. Moghith, Mohamed Salama This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5260002/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 9 You are reading this latest preprint version Abstract The social stigma and negative perceptions about Dementia are major problems that hinder disease management. Yet, the scarcity of resources that investigate the situation in Egypt limits our understanding of the role of stigma and its implications on the disease in the country. In this study, we explored the perceptions of Dementia in Egypt by investigating the perspectives of experts and healthcare providers to understand the implications on disease management. We conducted 24 in-depth interviews with experts in different fields who are aware of the Egyptian context. The findings reveal that social stigma significantly hinders early diagnosis and effective management of Dementia. Patients often avoid seeking medical help due to the fear of social stigma, leading to late-stage diagnosis and diminished treatment efficacy. The study emphasizes the need for community awareness and policy interventions to provide protective measures for securing patients and decreasing disease misconceptions for improved Dementia care in Egypt. Introduction Dementia is a neurological syndrome where many symptoms are worsened with time, such as communication problems, loss of memory, difficulty in finding the right words, agitation, improper sleeping, and confusion 1 . According to the World Health Organization, all dementia patients should receive care and support to maximize their health outcomes 2 , 3 . Globally, it is estimated that three-fourths of people with dementia are not diagnosed, and it is expected to reach 90% of undiagnosed dementia patients in low and middle-income countries (ADI, 2022). Stigma and fear of disease recognition are major complications that dementia patients face during their life, which can hinder their diagnosis and proper treatment journey, and negatively impact their quality of life 5 – 7 . Western communities have shown a wide acceptance of stigmas among patients with mental illness, while such perception is rare in developing countries 8 , 9 . Lower and middle-income countries are in urgent need of strengthening dementia diagnosis and management and dealing with it as a global health priority 9 , 10 . Egypt, a low-middle-income country demonstrates a growing aging population that requires prioritizing public health interventions toward mental and neurocognitive disorders 11 – 13 . In Egypt, data on dementia patients is scarce and limited to few academic research reflecting unrepresentative geographical areas, and there is no repository for dementia people 13 . Limited dementia awareness among the Egyptian population, especially in rural areas and lower educational level populations 14 . Moreover, Many Egyptians, as well as other populations in Arabic and LMICs, have wrong perceptions of dementia diagnosis 15 – 17 . This study aims to understand the perceptions and stigmatization of dementia in Egypt and the implications on disease diagnosis and management by investigating the perspectives of healthcare providers and experts. Methodology Study Design A qualitative approach, using in-depth interviews, was adopted to investigate experts’ perspectives on the stigmatization of Dementia in Egypt and its impact on disease management. Selection Criteria Selection of participants was based on evidenced knowledge and experience in dementia disease diagnosis and management. We selected national or international experts with experience in multiple disciplines in the field of Dementia in the Egyptian context such as neurocognitive healthcare professionals, clinical neurologists, and geriatric consultants. In addition, we selected some academic researchers in different fields such as neuroscientists, public health researchers, social researchers, and healthcare policy specialists who are also aware of the situation in Egypt to gather all opinions. Study Participants A list of 24 suggested candidates were accepted to take part in the research and were managed to be interviewed. Suggested candidates were selected based on having diverse proven experience in different related disciplines. Data Collection Face-to-face or virtual semi-structured interviews were conducted from Feb to Aug 2021 with the study participants. All interviews were audio/video recorded after obtaining participants` consent. In addition, follow-up emails with some participants were sent when specific questions and were emerged during the analysis. Data analysis The recordings of the interviews were transcribed and analyzed using the inductive approach to create a thematic index, where cross-checks were generated to validate the codes and themes produced. Interviews were conducted in English with the international participants, and in Arabic with Arabic-speaking participants, that is transcribed and then translated into English. Results 1- Participant Characteristics A number of 24 experts were interviewed either online or in person including 10 males and 24 14 females. The interviews covered national and international expertise in several specialties including healthcare professionals, clinical neurologists, and academic researchers in many fields including neuroscientists, public health researchers, social researchers, healthcare policy specialists, and geriatric consultants. All experts had significant experience in dementia, ensuring informed perspectives on the issues being studied (Table 1). Table1: Interviewees Characteristics Characteristics n (%) Gender Male 10 (41.7%) Female 14 (58.3%) Professional Role Academic Researchers 6 (25%) Clinical Neurologists 4 (16.7%) Geriatric Consultants 14 (58.3%) 2- Perceptions of Dementia Stigma and Stereotypes There is no doubt that stigma and stereotypes are significant complications of dementia due to the perception of people regarding the disease 7 . These perceptions significantly affect the well-being and quality of life of dementia patients and their families 5,6 . Therefore, many families tend to be protective of their patient relative, which hinders diagnosing and registering the patient. Many experts indicated that people’s perceptions of dementia are among the main obstacles in general advancing disease outcomes. Collecting patients’ data for a better understanding of the disease would be hindered due to the lack of awareness and the fear of social stigma. An international expert who is working on Dementia Research stated her experience regarding peoples’ perceptions. She said: “People have very different opinions of others and people with dementia themselves and their families, they didn't want to be asked about consent, or they didn't want to be asked about putting information … when they were only receiving their diagnosis because they said that's a very emotional time. They're trying to understand what the diagnosis means and so on” (Dementia Expert, DE1, International, May 2021) Protectiveness and Stigma in the Egyptian Context It is obvious from the expert’s note that a diagnosis of dementia makes people a bit sensitive or worried about their case as the general perception of the disease is negative, which makes them emotional. Many patients refuse to be asked to participate in a study during this emotional time. In addition, a neuroscience researcher who works for a large research institution in Egypt and who also has a long experience working in the USA expressed his opinion about the stigma associated with dementia. He stated: “A lot of cultures are very protective about the population. Part of it is the pharma culture because if you're taking data about disorders, there is a certain stigma, so one wonders whether some cultures, not specifically in Egypt but in general, mental diseases are underreported, so in certain circles, culturally even in Egypt, if you have somebody who's a mental disorder you basically lock him away and don't wanna embarrass yourself” (Neuroscience Researcher, NR1, Cairo, January 2021) It is obvious from the expert’s quote that the social stigma associated with dementia makes families tend to be protective of their patients. The fear of being stigmatized makes them hide the patient and refuse to share their data. Yet, this social stigma is not only associated with dementia but is usually associated with any mental disorder. COVID-19 and Stigma Moreover, a public health specialist added that the case of dementia stigma worsened after the COVID-19 pandemic. She mentioned: “So now there is COVID, the people who have COVID fear to tell because they are stigmatized, so think of people who have dementia” (Public Health Researcher, PHR1, Cairo, Jan 2021) The expert’s note revealed that the stigma associated with dementia could be very limiting, and that appeared after the COVID-19 pandemic. It was apparent that people with COVID-19 feared admitting that they were infected so as not to be stigmatized. Yet, the stigma of dementia is much worse. Impact of Stigma on Seeking Help A clinical expert elaborated that social stigmatization is a serious issue as it hinders patients from seeking help unless they are severely affected. This leads to the late detection and diagnosis of many of the cases that are mostly severely deteriorated, which decreases the effectiveness of the used interventions. She stated: “The issue of stigmatization is a very big issue, especially in dementia or in all the psychological diseases in general. The patient usually comes to us at a moderate to severe stage, and their family only brings him when they do not know how to deal with him. This is the fact that they do not come early on. No one comes early except the people who are very highly educated or those who have other conditions, and their consultant referred them to us … So, we call it a memory clinic, not a dementia clinic, for example, so that we can decrease the stigmatization in a way” (Clinical Neurologist, CN1, Cairo, Jan 2021) The expert indicated how the fear of stigma impacts when a patient is diagnosed unless the patient is highly educated or is referred by another consultant. She also mentioned that clinicians try to reduce this stigma in all ways to encourage patients to visit the clinics, seek help, and get the needed care. Effects on Diagnosis and Management In addition, some experts stated the opportunities available to overcome the stigmatization issue when developing the registry. They mentioned: “We recognize the stigma. So the way that works, so we show the patients that nothing that's posted online can identify them, so that way they're usually able to give their consent” (Dementia Expert 2, DE2, International, Sep 2021) “Definitely there is a stigma, but you know, those who left their homes and came to visit the clinic are not the ones who fear stigma, The stigmatized are the ones who hide in their homes, and no one knows anything about them” (Clinical Neurologist, CN2, Cairo, Jan 2021) Informing and convincing patients that their data will remain anonymous, and no one will be able to identify their personality is crucial to encouraging them to accept to share their data. In addition, initially, depending on patients who are already diagnosed in hospital clinics are not probably going to face the problem of fear of stigmatization as the fact that the patients went to seek help indicates that they overcame this fear of stigma. 3- Challenges in disease diagnosis Accuracy and Timing Dementia is a syndrome that is usually hard to diagnose due to many factors. Most of the experts elucidated that this part of diagnosis is particularly challenging in dementia as usually diagnosing the disease is either late, inaccurate, or broad with no indication of the subtype. All experts agreed that the absence of an accurate and early diagnosis of dementia is a major challenge. It is usually hard to reach the people as they only seek a diagnosis in the moderate or late stages of the disease. This leads to losing a very high proportion of potential patients as well as including data of only the severe cases, which will have implications on the outcomes of the registry. A clinical neurologist who works at a geriatric hospital with also a long experience in the UK mentioned: “The second thing is the absence of an accurate diagnosis. This makes us discover cases only when they are in late stages. That’s because we don’t have GPs, so the patient doesn’t go to a specialist unless someone refers or diagnoses him. So, only 10% of the patients will come to the clinics, but we lost the other 90%” (Clinical Neurologist, CN3, Cairo, March 2021) Most dementia patients do not get the proper diagnosis unless they are referred to a neurologist by another specialist. This problem is due to the lack of general practitioners in Egypt. So, no specialist discovers the symptoms unless the patient is severely affected; hence, they refer him to a neurologist. In addition, patients usually do not seek help unless they are severely affected, which also hinders the diagnosis until the late stages. A Dementia expert stated: “It sounds like most people don't have dementia properly diagnosed in the later stages because they're only seeking the care if they need to care, you know.” (Dementia Expert, DE3, International, Sep 2021) Diagnostic protocols Overall, the experts’ notes reveal that to overcome the challenge of detecting and diagnosing dementia. Some standard procedures should be put in place to help the early detection of patients as well as standardized, verified diagnostic measures. Depending on two specialists for diagnosis could be a way for the ascertainment of diagnosis. In addition, assigning a specialist from the registry to review the diagnosis and the followed criteria could also be another approach for verifying the diagnosis. Discussion The findings from this study provide critical insights into the social stigma of Dementia, particularly in Egypt, and its implications on disease management. The insights provided by the researchers, healthcare providers, and geriatric specialists revealed various challenges that impact the quality of care of Dementia patients as well as the quality of patients’ lives and their families. The social stigma associated with the disease is one of the major barriers that hinders early diagnosis and effective management of the disease. The experts highlighted that the negative perceptions perceived by the general community lead to a delay in seeking medical help. This finding is consistent with previous studies that reported stigma exacerbates the burden of the disease by causing social isolation and reluctance in early intervention 5 , 7 . In addition, the findings underscored the emotional and psychological effects of the public perceptions on the patients and their families which lead them to fear of sharing information or participating in research studies especially during the first period after diagnosis to avoid social ignoring. This aligns with global trends that report stigma to affect individuals’ lives but also influence families discissions’ on seeking help, providing care, and supporting the patients. 5 , 6 . Focusing on the Egyptian context, the experts highlighted that the difficulty in having an accurate and early diagnosis is due to several reasons. The social stigma discourages patients from visiting a medical doctor until the late and severe stages of the disease. This late diagnosis hinders patients from receiving early interventions that are crucial to managing the progression of the disease 18 . The lack of general practitioners and the healthcare system structure were also mentioned by experts as factors affecting the diagnostic procedure. Moreover, the absence of standardized diagnostic protocols and reliance on referrals further complicate the process. A more robust framework for diagnosis with relevant training for healthcare providers is needed for effective dementia identification and management. This is also in line with other data reported about LMIC where the healthcare system structure is challenging, patients find difficulty accessing healthcare, and the resources are limited 19 , 20 . The study suggested several strategies to help overcome the stigma associated with dementia that require multiple approaches including community education, policy changes, and protective measures to secure patients’ information. The results emphasized the importance of ensuring that patients’ data are confidential and are kept anonymous when the patient is included in any research study. Protecting patients is a crucial step to convincing patients and their families to share their information and hence encouraging them to seek help and get diagnosed. In addition, increasing awareness about dementia and reducing the misconceptions of the community can be pivotal in changing people’s attitudes towards the patients. This can be done through educational, public awareness campaigns and media support 1 . Additional procedures can be done also to reduce the stigma associated with the disease by reformulating the language. Experts talked about renaming the clinics as memory clinics instead of dementia clinics helps in reducing the fear of shame and makes patients and families more comfortable visiting the place 6 . Overall, the findings of the experts’ interviews recommend urgent public health interventions from all relevant stakeholders to address stigma and improve the diagnostic procedures of Dementia in Egypt. Conclusion The study provides a comprehensive understanding of the impact of social stigma on posing many challenges towards the early diagnosis and management of Dementia in Egypt. Addressing these challenges is crucial to help improve the effectiveness of dementia diagnosis and care in Egypt and hence improve the quality of patients’ lives. However, overcoming the barriers posed by social stigma and disease perceptions requires collaborative efforts from healthcare providers, policymakers, and the community in Egypt. Declarations Data availability The data that support the findings of this study are available and controlled by the authors, but restrictions apply to the availability of these data. The data are, however, available from the authors upon reasonable request. Author contributions SH & MS developed the study proposal. SH conducted the interviews, analyzed the transcripts, and formulated the results. SH & AM developed the manuscript. MS supervised the study and the writing process. All authors read and approved the final manuscript. Competing Interests All authors declare no financial or non-financial competing interests. Ethics statement The protocol was approved by The American University in Cairo (AUC) IRB Committee in accordance with the regulations of the Department of Health and Human Services for the protection of human subjects involved in research (45 CFR 46 as amended and published in the Federal Register on June 18, 1991) Informed consent Informed consents (Consent to Participate and Consent to Publish) were obtained from all participants. References Hossain, M., Crossland, J., Stores, R., Dewey, A. & Hakak, Y. Awareness and understanding of dementia in South Asians: A synthesis of qualitative evidence. Dementia (London) 19 , 1441–1473 (2020). WHO. WHO | Global action plan on the public health response to dementia 2017 - 2025. WHO (2017). Livingston, G. et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet 396 , 413–446 (2020). World Alzheimer Report 2022: Life after diagnosis: Navigating treatment, care and support. Preprint at https://www.alzint.org/resource/world-alzheimer-report-2022/ (2022). Rewerska-Juśko, M. & Rejdak, K. Social Stigma of People with Dementia. J Alzheimers Dis 78 , 1339–1343 (2020). Swaffer, K. Dementia: Stigma, Language, and Dementia-friendly. Dementia 13 , 709–716 (2014). Low, L. F. & Purwaningrum, F. Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma. BMC Geriatr 20 , 1–16 (2020). Angermeyer, M. C. & Dietrich, S. Public beliefs about and attitudes towards people with mental illness: a review of population studies. Acta Psychiatr Scand 113 , 163–179 (2006). Bernstein Sideman, A. et al. Facilitators and Barriers to Dementia Assessment and Diagnosis: Perspectives From Dementia Experts Within a Global Health Context. Front Neurol 13 , 769360 (2022). Aguzzoli, C. S. et al. World Alzheimer Report 2024: Global changes in attitudes to dementia. Preprint at https://www.alzint.org/resource/world-alzheimer-report-2024/ (2024). Odejimi, O., Tadros, G. & Sabry, N. A systematic review of the prevalence of mental and neurocognitive disorders amongst older adults’ populace in Egypt. Middle East Current Psychiatry 27 , 1–12 (2020). Salem, G., Said, R. M., Amin, S. I., Elserafy, T. S. E. S. & Awadallah, M. B. Prevalence, types and different predictors of Dementia ,s diseases among people, community based study, , Egypt. The Egyptian Family Medicine Journal 4 , 64–79 (2020). Elshahidi, M. H., Elhadidi, M. A., Sharaqi, A. A., Mostafa, A. & Elzhery, M. A. Prevalence of dementia in Egypt: A systematic review. Neuropsychiatr Dis Treat 13 , 715–720 (2017). Ashour, A. A. et al. Dementia awareness in Egypt: what do people really know? Egyptian Journal of Neurology, Psychiatry and Neurosurgery 60 , 1–8 (2024). El-Tallawy, H. et al. Prevalence of neurological disorders in Al Quseir, Egypt: methodological aspects. Neuropsychiatr Dis Treat 9 , 1295 (2013). Saka, S. The Association Between Perceived Caregiver Mental Health Stigma and Middle Eastern Emerging Adult Help-Seeking Intentions: Moderating Effect of Social Support. Preprint at (2024). Al-Krenawi, A. Mental health practice in Arab countries. Curr Opin Psychiatry 18 , 560–564 (2005). Quiroz, Y. T. et al. Addressing the disparities in dementia risk, early detection and care in Latino populations: Highlights from the second Latinos & Alzheimer’s Symposium. Alzheimer’s and Dementia 18 , 1677–1686 (2022). Sadak, T. I., Katon, J., Beck, C., Cochrane, B. B. & Borson, S. Key neuropsychiatric symptoms in common dementias: Prevalence and implications for caregivers, clinicians, and health systems. Res Gerontol Nurs 7 , 44–52 (2014). Mattap, S. M. et al. The economic burden of dementia in low- and middle-income countries (LMICs): a systematic review. BMJ Glob Health 7 , (2022). Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 30 Oct, 2024 Reviews received at journal 29 Oct, 2024 Reviewers agreed at journal 29 Oct, 2024 Reviews received at journal 29 Oct, 2024 Reviewers agreed at journal 29 Oct, 2024 Reviewers invited by journal 28 Oct, 2024 Editor assigned by journal 25 Oct, 2024 Submission checks completed at journal 24 Oct, 2024 First submitted to journal 14 Oct, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5260002","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":372283013,"identity":"4dc53258-5eb2-45dd-be1d-a4c4ec9cfaac","order_by":0,"name":"Shimaa A. 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According to the World Health Organization, all dementia patients should receive care and support to maximize their health outcomes \u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e,\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. Globally, it is estimated that three-fourths of people with dementia are not diagnosed, and it is expected to reach 90% of undiagnosed dementia patients in low and middle-income countries (ADI, 2022).\u003c/p\u003e \u003cp\u003eStigma and fear of disease recognition are major complications that dementia patients face during their life, which can hinder their diagnosis and proper treatment journey, and negatively impact their quality of life \u003csup\u003e\u003cspan additionalcitationids=\"CR6\" citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. Western communities have shown a wide acceptance of stigmas among patients with mental illness, while such perception is rare in developing countries \u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e,\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e. Lower and middle-income countries are in urgent need of strengthening dementia diagnosis and management and dealing with it as a global health priority \u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e,\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eEgypt, a low-middle-income country demonstrates a growing aging population that requires prioritizing public health interventions toward mental and neurocognitive disorders \u003csup\u003e\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e. In Egypt, data on dementia patients is scarce and limited to few academic research reflecting unrepresentative geographical areas, and there is no repository for dementia people \u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e. Limited dementia awareness among the Egyptian population, especially in rural areas and lower educational level populations \u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e. Moreover, Many Egyptians, as well as other populations in Arabic and LMICs, have wrong perceptions of dementia diagnosis \u003csup\u003e\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThis study aims to understand the perceptions and stigmatization of dementia in Egypt and the implications on disease diagnosis and management by investigating the perspectives of healthcare providers and experts.\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eStudy Design\u003c/p\u003e \u003cp\u003eA qualitative approach, using in-depth interviews, was adopted to investigate experts\u0026rsquo; perspectives on the stigmatization of Dementia in Egypt and its impact on disease management.\u003c/p\u003e \u003cp\u003eSelection Criteria\u003c/p\u003e \u003cp\u003eSelection of participants was based on evidenced knowledge and experience in dementia disease diagnosis and management. We selected national or international experts with experience in multiple disciplines in the field of Dementia in the Egyptian context such as neurocognitive healthcare professionals, clinical neurologists, and geriatric consultants. In addition, we selected some academic researchers in different fields such as neuroscientists, public health researchers, social researchers, and healthcare policy specialists who are also aware of the situation in Egypt to gather all opinions.\u003c/p\u003e \u003cp\u003eStudy Participants\u003c/p\u003e \u003cp\u003eA list of 24 suggested candidates were accepted to take part in the research and were managed to be interviewed. Suggested candidates were selected based on having diverse proven experience in different related disciplines.\u003c/p\u003e \u003cp\u003eData Collection\u003c/p\u003e \u003cp\u003eFace-to-face or virtual semi-structured interviews were conducted from Feb to Aug 2021 with the study participants. All interviews were audio/video recorded after obtaining participants` consent. In addition, follow-up emails with some participants were sent when specific questions and were emerged during the analysis.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eThe recordings of the interviews were transcribed and analyzed using the inductive approach to create a thematic index, where cross-checks were generated to validate the codes and themes produced. Interviews were conducted in English with the international participants, and in Arabic with Arabic-speaking participants, that is transcribed and then translated into English.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e1-\u0026nbsp; \u0026nbsp;Participant Characteristics\u003c/p\u003e\n\u003cp\u003eA number of 24 experts were interviewed either online or in person including 10 males and 24 14 females. The interviews covered national and international expertise in several specialties including healthcare professionals, clinical neurologists, and academic researchers in many fields including neuroscientists, public health researchers, social researchers, healthcare policy specialists, and geriatric consultants. All experts had significant experience in dementia, ensuring informed perspectives on the issues being studied (Table 1).\u003c/p\u003e\n\u003cp\u003eTable1: Interviewees Characteristics\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"416\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eCharacteristics\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003en (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e10 (41.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e14 (58.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eProfessional Role\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAcademic Researchers\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e6 (25%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eClinical Neurologists\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e4 (16.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eGeriatric Consultants\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e14 (58.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e2-\u0026nbsp; \u0026nbsp;Perceptions of Dementia\u003c/p\u003e\n\u003cp\u003eStigma and Stereotypes\u003c/p\u003e\n\u003cp\u003eThere is no doubt that stigma and stereotypes are significant complications of dementia due to the perception of people regarding the disease \u003csup\u003e7\u003c/sup\u003e. These perceptions significantly affect the well-being and quality of life of dementia patients and their families \u003csup\u003e5,6\u003c/sup\u003e. Therefore, many families tend to be protective of their patient relative, which hinders diagnosing and registering the patient.\u003c/p\u003e\n\u003cp\u003eMany experts indicated that people’s perceptions of dementia are among the main obstacles in general advancing disease outcomes. Collecting patients’ data for a better understanding of the disease would be hindered due to the lack of awareness and the fear of social stigma.\u003c/p\u003e\n\u003cp\u003eAn international expert who is working on Dementia Research stated her experience regarding peoples’ perceptions. She said:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“People have very different opinions of others and people with dementia themselves and their families, they didn't want to be asked about consent, or they didn't want to be asked about putting information … when they were only receiving their diagnosis because they said that's a very emotional time. They're trying to understand what the diagnosis means and so on” (Dementia Expert, DE1, International, May 2021)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eProtectiveness and Stigma in the Egyptian Context\u003c/p\u003e\n\u003cp\u003eIt is obvious from the expert’s note that a diagnosis of dementia makes people a bit sensitive or worried about their case as the general perception of the disease is negative, which makes them emotional. Many patients refuse to be asked to participate in a study during this emotional time.\u003c/p\u003e\n\u003cp\u003eIn addition, a neuroscience researcher who works for a large research institution in Egypt and who also has a long experience working in the USA expressed his opinion about the stigma associated with dementia. He stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“A lot of cultures are very protective about the population. Part of it is the pharma culture because if you're taking data about disorders, there is a certain stigma, so one wonders whether some cultures, not specifically in Egypt but in general, mental diseases are underreported, so in certain circles, culturally even in Egypt, if you have somebody who's a mental disorder you basically lock him away and don't wanna embarrass yourself” (Neuroscience Researcher, NR1, Cairo, January 2021)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIt is obvious from the expert’s quote that the social stigma associated with dementia makes families tend to be protective of their patients. The fear of being stigmatized makes them hide the patient and refuse to share their data. Yet, this social stigma is not only associated with dementia but is usually associated with any mental disorder.\u003c/p\u003e\n\u003cp\u003eCOVID-19 and Stigma\u003c/p\u003e\n\u003cp\u003eMoreover, a public health specialist added that the case of dementia stigma worsened after the COVID-19 pandemic. She mentioned:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“So now there is COVID, the people who have COVID fear to tell because they are stigmatized, so think of people who have dementia” (Public Health Researcher, PHR1, Cairo, Jan 2021)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe expert’s note revealed that the stigma associated with dementia could be very limiting, and that appeared after the COVID-19 pandemic. It was apparent that people with COVID-19 feared admitting that they were infected so as not to be stigmatized. Yet, the stigma of dementia is much worse.\u003c/p\u003e\n\u003cp\u003eImpact of Stigma on Seeking Help\u003c/p\u003e\n\u003cp\u003eA clinical expert elaborated that social stigmatization is a serious issue as it hinders patients from seeking help unless they are severely affected. This leads to the late detection and diagnosis of many of the cases that are mostly severely deteriorated, which decreases the effectiveness of the used interventions. She stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“The issue of stigmatization is a very big issue, especially in dementia or in all the psychological diseases in general. The patient usually comes to us at a moderate to severe stage, and their family only brings him when they do not know how to deal with him. This is the fact that they do not come early on. No one comes early except the people who are very highly educated or those who have other conditions, and their consultant referred them to us … So, we call it a memory clinic, not a dementia clinic, for example, so that we can decrease the stigmatization in a way” (Clinical Neurologist, CN1, Cairo, Jan 2021)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe expert indicated how the fear of stigma impacts when a patient is diagnosed unless the patient is highly educated or is referred by another consultant. She also mentioned that clinicians try to reduce this stigma in all ways to encourage patients to visit the clinics, seek help, and get the needed care.\u003c/p\u003e\n\u003cp\u003eEffects on Diagnosis and Management\u003c/p\u003e\n\u003cp\u003eIn addition, some experts stated the opportunities available to overcome the stigmatization issue when developing the registry. They mentioned:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“We recognize the stigma. So the way that works, so we show the patients that nothing that's posted online can identify them, so that way they're usually able to give their consent” (Dementia Expert 2, DE2, International, Sep 2021)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“Definitely there is a stigma, but you know, those who left their homes and came to visit the clinic are not the ones who fear stigma, The stigmatized are the ones who hide in their homes, and no one knows anything about them” (Clinical Neurologist, CN2, Cairo, Jan 2021)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eInforming and convincing patients that their data will remain anonymous, and no one will be able to identify their personality is crucial to encouraging them to accept to share their data. In addition, initially, depending on patients who are \u003cem\u003ealready diagnosed in hospital clinics are not probably going to face the problem of fear of stigmatization as the fact that the patients went to seek help indicates that they overcame this fear of stigma.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e3-\u0026nbsp; \u0026nbsp;Challenges in disease diagnosis\u003c/p\u003e\n\u003cp\u003eAccuracy and Timing\u003c/p\u003e\n\u003cp\u003eDementia is a syndrome that is usually hard to diagnose due to many factors. Most of the experts elucidated that this part of diagnosis is particularly challenging in dementia as usually diagnosing the disease is either late, inaccurate, or broad with no indication of the subtype.\u003c/p\u003e\n\u003cp\u003eAll experts agreed that the absence of an accurate and early diagnosis of dementia is a major challenge. It is usually hard to reach the people as they only seek a diagnosis in the moderate or late stages of the disease. \u0026nbsp;This leads to losing a very high proportion of potential patients as well as including data of only the severe cases, which will have implications on the outcomes of the registry.\u003c/p\u003e\n\u003cp\u003eA clinical neurologist who works at a geriatric hospital with also a long experience in the UK mentioned:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“The second thing is the absence of an accurate diagnosis. This makes us discover cases only when they are in late stages. That’s because we don’t have GPs, so the patient doesn’t go to a specialist unless someone refers or diagnoses him. So, only 10% of the patients will come to the clinics, but we lost the other 90%” (Clinical Neurologist, CN3, Cairo, March 2021)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMost dementia patients do not get the proper diagnosis unless they are referred to a neurologist by another specialist. This problem is due to the lack of general practitioners in Egypt. So, no specialist discovers the symptoms unless the patient is severely affected; hence, they refer him to a neurologist.\u003c/p\u003e\n\u003cp\u003eIn addition, patients usually do not seek help unless they are severely affected, which also hinders the diagnosis until the late stages. A Dementia expert stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“It sounds like most people don't have dementia properly diagnosed in the later stages because they're only seeking the care if they need to care, you know.” (Dementia Expert, DE3, International, Sep 2021) \u0026nbsp;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDiagnostic protocols\u003c/p\u003e\n\u003cp\u003eOverall, the experts’ notes reveal that to overcome the challenge of detecting and diagnosing dementia. Some standard procedures should be put in place to help the early detection of patients as well as standardized, verified diagnostic measures. Depending on two specialists for diagnosis could be a way for the ascertainment of diagnosis. In addition, assigning a specialist from the registry to review the diagnosis and the followed criteria could also be another approach for verifying the diagnosis.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe findings from this study provide critical insights into the social stigma of Dementia, particularly in Egypt, and its implications on disease management. The insights provided by the researchers, healthcare providers, and geriatric specialists revealed various challenges that impact the quality of care of Dementia patients as well as the quality of patients\u0026rsquo; lives and their families. The social stigma associated with the disease is one of the major barriers that hinders early diagnosis and effective management of the disease. The experts highlighted that the negative perceptions perceived by the general community lead to a delay in seeking medical help. This finding is consistent with previous studies that reported stigma exacerbates the burden of the disease by causing social isolation and reluctance in early intervention \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e,\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. In addition, the findings underscored the emotional and psychological effects of the public perceptions on the patients and their families which lead them to fear of sharing information or participating in research studies especially during the first period after diagnosis to avoid social ignoring. This aligns with global trends that report stigma to affect individuals\u0026rsquo; lives but also influence families discissions\u0026rsquo; on seeking help, providing care, and supporting the patients. \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e,\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eFocusing on the Egyptian context, the experts highlighted that the difficulty in having an accurate and early diagnosis is due to several reasons. The social stigma discourages patients from visiting a medical doctor until the late and severe stages of the disease. This late diagnosis hinders patients from receiving early interventions that are crucial to managing the progression of the disease \u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e. The lack of general practitioners and the healthcare system structure were also mentioned by experts as factors affecting the diagnostic procedure. Moreover, the absence of standardized diagnostic protocols and reliance on referrals further complicate the process. A more robust framework for diagnosis with relevant training for healthcare providers is needed for effective dementia identification and management. This is also in line with other data reported about LMIC where the healthcare system structure is challenging, patients find difficulty accessing healthcare, and the resources are limited \u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e,\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe study suggested several strategies to help overcome the stigma associated with dementia that require multiple approaches including community education, policy changes, and protective measures to secure patients\u0026rsquo; information. The results emphasized the importance of ensuring that patients\u0026rsquo; data are confidential and are kept anonymous when the patient is included in any research study. Protecting patients is a crucial step to convincing patients and their families to share their information and hence encouraging them to seek help and get diagnosed. In addition, increasing awareness about dementia and reducing the misconceptions of the community can be pivotal in changing people\u0026rsquo;s attitudes towards the patients. This can be done through educational, public awareness campaigns and media support \u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. Additional procedures can be done also to reduce the stigma associated with the disease by reformulating the language. Experts talked about renaming the clinics as memory clinics instead of dementia clinics helps in reducing the fear of shame and makes patients and families more comfortable visiting the place \u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eOverall, the findings of the experts\u0026rsquo; interviews recommend urgent public health interventions from all relevant stakeholders to address stigma and improve the diagnostic procedures of Dementia in Egypt.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe study provides a comprehensive understanding of the impact of social stigma on posing many challenges towards the early diagnosis and management of Dementia in Egypt. Addressing these challenges is crucial to help improve the effectiveness of dementia diagnosis and care in Egypt and hence improve the quality of patients\u0026rsquo; lives. However, overcoming the barriers posed by social stigma and disease perceptions requires collaborative efforts from healthcare providers, policymakers, and the community in Egypt.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data that support the findings of this study are available and controlled by the authors, but restrictions apply to the availability of these data. The data are, however, available from the authors upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSH \u0026amp; MS developed the study proposal. SH conducted the interviews, analyzed the transcripts, and formulated the results. SH \u0026amp; AM developed the manuscript. MS supervised the study and the writing process. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll authors declare no financial or non-financial competing interests.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe protocol was approved by The American University in Cairo (AUC) IRB Committee in accordance with the regulations of the Department of Health and Human Services for the protection of human subjects involved in research (45 CFR 46 as amended and published in the Federal Register on June 18, 1991)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eInformed consent\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInformed consents (Consent to Participate and Consent to Publish) were obtained from all participants.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eHossain, M., Crossland, J., Stores, R., Dewey, A. \u0026amp; Hakak, Y. 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M. \u003cem\u003eet al.\u003c/em\u003e The economic burden of dementia in low- and middle-income countries (LMICs): a systematic review. \u003cem\u003eBMJ Glob Health\u003c/em\u003e \u003cstrong\u003e7\u003c/strong\u003e, (2022).\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"discover-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"","sideBox":"Learn more about [Discover Medicine](https://link.springer.com/journal/44337)","snPcode":"44337","submissionUrl":"https://submission.springernature.com/new-submission/44337/3","title":"Discover Medicine","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-5260002/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5260002/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eThe social stigma and negative perceptions about Dementia are major problems that hinder disease management. Yet, the scarcity of resources that investigate the situation in Egypt limits our understanding of the role of stigma and its implications on the disease in the country. In this study, we explored the perceptions of Dementia in Egypt by investigating the perspectives of experts and healthcare providers to understand the implications on disease management. We conducted 24 in-depth interviews with experts in different fields who are aware of the Egyptian context. The findings reveal that social stigma significantly hinders early diagnosis and effective management of Dementia. Patients often avoid seeking medical help due to the fear of social stigma, leading to late-stage diagnosis and diminished treatment efficacy. The study emphasizes the need for community awareness and policy interventions to provide protective measures for securing patients and decreasing disease misconceptions for improved Dementia care in Egypt.\u003c/p\u003e","manuscriptTitle":"Perceptions of Dementia and Their Implications on Disease Management in Egypt: A Perspective","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-13 15:20:41","doi":"10.21203/rs.3.rs-5260002/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-10-30T14:51:42+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-10-29T08:25:23+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"92747444410063003682765303795032766081","date":"2024-10-29T07:52:30+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-10-29T05:11:45+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"222681421121906934810415078373833083150","date":"2024-10-29T04:45:00+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-10-28T16:31:24+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-10-25T09:23:37+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-10-24T04:56:54+00:00","index":"","fulltext":""},{"type":"submitted","content":"Discover Medicine","date":"2024-10-14T09:27:47+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"discover-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"","sideBox":"Learn more about [Discover Medicine](https://link.springer.com/journal/44337)","snPcode":"44337","submissionUrl":"https://submission.springernature.com/new-submission/44337/3","title":"Discover Medicine","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"34335e51-a3e0-41d6-868c-afde445855fe","owner":[],"postedDate":"November 13th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-01-13T18:23:07+00:00","versionOfRecord":[],"versionCreatedAt":"2024-11-13 15:20:41","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5260002","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5260002","identity":"rs-5260002","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}