ORIGINAL RESEARCH published: 28 March 2022 doi: 10.3389/fneur.2022.769360 Facilitators and Barriers to Dementia Assessment and Diagnosis: Perspectives From Dementia Experts Within a Global Health Context Alissa Bernstein Sideman 1,2,3*, Tala Al-Rousan 2,4 , Elena Tsoy 2,5 , Stefanie D. Piña Escudero 2,5 , Maritza Pintado-Caipa 2,6 , Suchanan Kanjanapong 2,7 , Lingani Mbakile-Mahlanza 2,8 , Maira Okada de Oliveira 2,9,10 , Myriam De la Cruz-Puebla 11,12,13,14,15 , Stelios Zygouris 2,16 , Aya Ashour Mohamed 2,17 , Hany Ibrahim 11,18 , Collette A. Goode 5 , Bruce L. Miller 2,5 , Victor Valcour 2,5 and Katherine L. Possin 2,5* 1 Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, United States, 2 Global Brain Health Institute, University of California, San Francisco, San Francisco, CA, United States, 3 Department of Edited by: Humanities and Social Sciences, University of California, San Francisco, San Francisco, CA, United States, 4 Herbert Görsev Yener, Wertheim School of Public Health, University of California, La Jolla, CA, United States, 5 Department of Neurology, Memory Izmir University of Economics, Turkey and Aging Center, University of California, San Francisco, San Francisco, CA, United States, 6 Research Department, Reviewed by: Peruvian Institute of Neurosciences, Lima, Peru, 7 Division of Geriatrics, Department of Preventive Medicine, Faculty of Ladson Hinton, Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand, 8 Department of Psychology, Faculty of Social Sciences, UC Davis Health, United States University of Botswana, Gaborone, Botswana, 9 Cognitive and Behavioral Neurology Unit, Hospital das Clinicas, University of Deniz Yerlikaya, São Paulo, São Paulo, Brazil, 10 Hospital Santa Marcelina, São Paulo, São Paulo, Brazil, 11 Global Brain Health Institute, Trinity Dokuz Eylul University, Turkey College Dublin, Dublin, Ireland, 12 Neurosciences Institute, Autonomous University of Barcelona, Barcelona, Spain, 13 *Correspondence: Cognition and Brain Plasticity Unit, University of Barcelona, Barcelona, Spain, 14 Bellvitge Institute for Biomedical Research, Alissa Bernstein Sideman Barcelona, Spain, 15 Technical University of Ambato, Tungurahua, Ecuador, 16 Centre for Research and Technology Alissa.bernstein@ucsf.edu Hellas/Information Technologies Institute, Thessaloniki, Greece, 17 Department of Neurology, Ain Shams University, Cairo, Katherine L. Possin Egypt, 18 Geriatric Medicine Department, Ain Shams University, Cairo, Egypt Katherine.possin@ucsf.edu Objectives: Dementia poses one of the greatest global health challenges, affecting 50 Specialty section: This article was submitted to million people worldwide. With 10 million new cases each year, dementia is a growing Dementia and Neurodegenerative burden, particularly in low- and middle-income countries (LMIC). This study aimed to Diseases, a section of the journal identify the facilitators and barriers to providing quality dementia assessment and care in Frontiers in Neurology LMICs from a global health perspective. Received: 01 September 2021 Methods/Design: A qualitative semi-structured interview study with 20 dementia expert Accepted: 25 January 2022 Published: 28 March 2022 healthcare providers from 19 countries. To be included, providers had to: practice Citation: dementia assessment or care in LMICs where the population over age 60 is projected Bernstein Sideman A, Al-Rousan T, to more than double by 2050 and be recognized as a leading dementia expert in the Tsoy E, Piña Escudero SD, region based on position, research publications, and/or policy leadership. Interviews were Pintado-Caipa M, Kanjanapong S, Mbakile-Mahlanza L, Okada de analyzed by a multidisciplinary team of researchers using thematic analysis. Oliveira M, De la Cruz-Puebla M, Zygouris S, Ashour Mohamed A, Results: Barriers to dementia assessment and care included stigma about dementia, Ibrahim H, Goode CA, Miller BL, poor patient engagement in and access to healthcare, inadequate linguistic and Valcour V and Possin KL (2022) cultural validation, limited dementia capable workforce, competing healthcare system Facilitators and Barriers to Dementia Assessment and Diagnosis: priorities, and insufficient health financing. Facilitators included the rise in dementia Perspectives From Dementia Experts awareness campaigns, dementia training for general practitioners, availability of Within a Global Health Context. Front. Neurol. 13:769360. family support and family caregivers, and national and international collaborations doi: 10.3389/fneur.2022.769360 including coordinated policy efforts and involvement in international research initiatives. Frontiers in Neurology | www.frontiersin.org 1 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis Conclusions: Findings from this study provide insights for prioritizing dementia assessment and care capacity-building in LMICs as a global health priority and for tailored public health approaches to strengthen dementia assessment and care at the individual, community, national, and multi-national levels. Keywords: dementia, global health, dementia experts, qualitative study, cognitive assessment KEY POINTS population. Our approach was to collect insights from in- depth interviews with leading regional dementia experts who are • This study used qualitative semi-structured interviews to working to address gaps in dementia care through their clinical understand and characterize the assessment and care of work, research, and/or policy work. Knowledge gained in these dementia in low- and middle-income countries from the expert interviews may offer insight for developing national and perspective of expert healthcare providers and leaders in international strategies and interventions. dementia research and policy. • We identified four major thematic domains, and within these Social-Ecological Model domains characterized facilitators and barriers based on a The social-ecological model is a framework that suggests social-ecological model of health. people’s experiences are shaped by interactions among individual, • While much of the literature focuses on dementia care in high- interpersonal, institutional, community, and policy factors (7). income countries, these findings demonstrate the challenges Following analysis of our data, we identified the social-ecological and strengths that exist to dementia assessment and care model as an approach to organizing our findings, as it can be used from the perspective of dementia experts from a broader to provide a way of understanding how both social and structural global view. factors shape dementia assessment and care approaches in global • Based on these findings, we provide recommendations using health settings. A social-ecological model has been used in a social-ecological model for taking a tailored public health prior studies to understand attitudes about dementia, access to approach to strengthening dementia care at the individual, dementia care, and dementia awareness (8–10). The model is community, national, and policy levels. dynamic in that some findings may fall into more than one category. We demonstrate ways components of the model can collectively guide efforts to improve dementia care globally by INTRODUCTION either developing new interventions or building on strengths and approaches that already exist. Dementia is a costly disease impacting patients, families, and societies, and is a major and growing global health challenge due METHODS to population aging. In 2015, Alzheimer’s Disease International (ADI) reported that there were over 9.9 million new cases of Design dementia each year worldwide, implying one new case every 3.2 We conducted a qualitative study based on interviews with seconds (1). Of these cases, 58% of lived in LMIC, and this is dementia experts from different regions of the world, expected to rise to 68% in 2050 due to changing demographics focused primarily on those in LMICs. Interviewers from and healthcare infrastructure (1, 2). These countries are expected our multidisciplinary team had expertise in global health, to face major challenges to ensure that their health and social social science, neurology, and neuropsychology. Interviewers systems are prepared to meet the increasing dementia care needs were trained as part of their Global Brain Health Institute associated with this demographic shift. fellowship by the first author, a medical anthropologist with Research has demonstrated that people with dementia and 15 years of qualitative research experience. The study was their caregivers are not receiving services of the type and conducted in accordance with the Consolidated Criteria for quality that they need and there are wide variations in detecting Reporting Qualitative Research (COREQ) reporting guidelines dementia globally (3). Pragmatic, realistic strategies and policies (Supplementary Materials, Appendix 1). that address key facilitators and barriers to quality dementia care are crucially needed (4, 5). Within the countries experiencing Participants and Setting the most rapid growth in the aging population, dementia care We selected experts in dementia diagnosis and care using experts who are providing clinical services on the ground as well purposeful sampling (11), which involved identifying and as leading research and policy initiatives could provide a critical interviewing individuals who are knowledgeable about dementia. perspective to inform the development of National Dementia Inclusion criteria were: (1) dementia experts in countries with Plans and brain health diplomacy initiatives (6). projected growth of the population aged 60 years or older of The purpose of this study was to identify facilitators and over 100% between 2017 and 2050 based on United Nations barriers to meeting dementia care needs that are common Department of Economic and Social Affairs Population Division across countries experiencing a rapid increase in the aging estimates (12); (2) established expertise in dementia diagnosis Frontiers in Neurology | www.frontiersin.org 2 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis and care, including the following disciplines: geriatric medicine, RESULTS geriatric psychiatry, neurology, neuropsychology, and psychiatry; (3) currently involved in clinical practice and training; and (4) Participants recognition as a leading national dementia expert based on We provide characteristics of the 19 countries represented role, publications, and/or policy leadership. We first identified by our 20 research participants in Table 1 and demographic a list of possible participants based on recommendations from and practice characteristics of our sample in Table 2. Ten professional networks, local Alzheimer’s Associations, and multi- participants were neurologists, four were neuropsychologists, national studies. We then contacted experts by email to invite three were geriatricians, two were psychiatrists, and one was a them to participate in the study. We contacted a total of geriatric psychiatrist. 26 experts and 20 responded and agreed to participate. We conducted interviews from August 2019 through November Barriers and Facilitators According to a 2020. All participants provided oral informed consent. This study Social Ecological Model Framework was approved by the Institutional Review Board at the University Respondents identified key barriers and facilitators to dementia of California, San Francisco. assessment and care (Figure 1, Tables 3 and 4). We present these by Social-Ecological (SE) factor. For each barrier and facilitator we provide a description of the theme and one or two Data Collection exemplary quotations in the text. Additional quotations from a Our multidisciplinary team developed a pre-interview survey range of participants are presented in the tables. We found more (Supplementary materials, Appendix 2) and a semi-structured agreement among experts around barriers to dementia diagnosis interview guide (Supplementary materials, Appendix 3). Study than we did around facilitators, but indicate in the text when a instruments were reviewed by the team, and then piloted with topic raised was a major theme endorsed by many participants or a neurologist. The interview covered the following domains: (1) a minor theme endorsed by fewer participants. expert and national context; (2) process for diagnosing dementia; (3) facilitators and barriers to dementia diagnosis and care; Barriers (4) needs to improve dementia diagnosis and care. While the Individual and Interpersonal Factors interview guide included structured questions, the interviews Theme 1: Stigma and Lack of Awareness and Knowledge were open-ended, meaning that interviewers were able to ask About Dementia follow-up questions, request examples, and expand on topics as Every respondent reported major challenges related to either long as all key domains of the interview guide were covered. stigma or a lack of knowledge and awareness about dementia in Once an expert was identified, we sent the survey via a password- the general population. Some of the issues related to awareness protected online platform and scheduled an interview. Interviews that they identified included seeing dementia as part of normal were conducted in English or the expert’s native language, based aging, denial of the disease, and ageism. Many felt that more on their preference, by trained researchers (AS, ET, SE, MP-C, education would remedy this lack of awareness. For a few SK, TA-R, LM-M, MdO, MlCP, SZ, AM, and HI) via secure participants, stigma emerged in relationship to cultural beliefs videoconferencing, and lasted approximately 1 h. They were about cognitive impairment, such as beliefs about symptoms digitally recorded and transcribed. If the interview was not of dementia being connected to witchcraft. The issue of conducted in English, it was translated for analysis. stigma and awareness was exemplified by a geriatrician from Latin America who discussed the relationship between stigma and discrimination, Data Analysis We used inductive and deductive thematic analysis to analyze Geriatrician, Latin America: One of the main barriers is that there the data and identify key themes through an iterative process is stigma in this country. When families find out that their loved one using ATLAS.ti. A team of 3–5 coders inductively coded 5/20 is sick, they do not make it public. . . discrimination toward people transcripts, meeting regularly to review the codes. We discussed with brain diseases is a serious cultural problem. and resolved discrepancies in coding and developed a codebook based on consensus. The codebook was reviewed by the first, Furthermore, while most experts referred to stigma when talking second, and senior authors. The first author then used this about the general population, representing a major theme, some codebook to code the remaining transcripts (15/20). When also noted that there was a lack of awareness about dementia new codes emerged, they were reviewed by the team during among clinicians, as well, particularly general practitioners. For regular meetings and added to the codebook. Disagreements were those that identified this theme among clinicians, the sense of discussed and resolved. We reached thematic saturation when no stigma and lack of awareness involved clinicians avoiding fields new codes emerged, though we continued to code all transcripts. that focus on dementia, lack of expertise, lack of time or ability The team then identified themes based on the codes and to gain expertise, or disinterest. Those that identified this issue themes were deductively organized based on the social-ecological related to awareness felt that lack of awareness created barriers to framework, our overarching theoretical model. We reviewed good dementia care. the data for each theme and identified the most illustrative A geriatrician in Africa articulated this challenge of lack of quotations to incorporate into the manuscript and tables. awareness among healthcare providers. Frontiers in Neurology | www.frontiersin.org 3 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis TABLE 1 | Characteristics of the 19 countries represented by experts in the studya . World region Country Projected Literacy rate (%) Mean years of Rural residence GDPPC (USD) Gini index Linguistic diversity growth (%) (2)b (13)c school (13) d (%) (13)e (13)e (14)f index (15)g Africa Botswana 264 40 ND 31 $8,259 53.3 0.444 Africa Kenya 247 57 ND 73 $1,711 40.8 0.901 Africa Ghana 185 51 ND 44 $2,202 43.5 0.805 Americas Brazil 235 79 8.0 13 $8,921 53.9 0.032 Americas Colombia 237 83 8.5 19 $6,651 50.4 0.030 Americas Ecuador 208 73 8.8 36 $6,345 45.4 0.264 Americas Mexico 244 81 8.9 20 $9,698 45.4 0.135 Americas Nicaragua 276 56 ND 41 $2,029 46.2 0.081 Americas Peru 219 79 9.7 22 $6,947 42.8 0.376 Asia India 203 45 ND 66 $2,016 37.8 0.930 Asia Indonesia 223 74 8.2 45 $3,894 39.0 0.846 Asia Kyrgyzstan 220 97 ND 64 $1,281 27.7 0.670 Asia Taiwan 204 ND ND ND ND ND ND Asia Thailand 208 79 8.5 50 $7,274 36.4 0.753 Europe Greece 157 95 10.3 21 $20,324 34.4 0.175 Europe Spain 166 95 10.3 20 $30,524 34.7 0.438 Middle East Egypt 195 33 9.0 57 $2,549 31.5 0.509 Middle East Jordan 270 91 ND 9 $4,248 33.7 0.484 Middle East UAE 779 69 12.5 13 $43,005 32.5 0.777 GDPPC, gross domestic product per capita; ND, no data; UAE, United Arab Emirates. a Adapted from Tsoy et al. (16). b Projected growth of population aged 60 and above between 2017 and 2050. c Literacy rate among population aged 65 and above; reference year: 2013 (Botswana), 2015 (Nicaragua, Thailand, UAE), 2017 (Ecuador, Egypt), 2018 (Brazil, Colombia, Greece, India, Indonesia, Jordan, Kenya, Kyrgyzstan, Mexico, Peru, Spain). d Mean years of formal schooling among adults aged 25 and above; reference year: 2016 (Greece), 2017 (Ecuador, Egypt), 2018 (Brazil, Colombia, Indonesia, Mexico, Peru, Spain, Thailand, UAE). e Rural residence among adults aged 25 and above; reference year: 2018 (all). f Gini index measures the deviation of the actual income distribution from a hypothetical perfectly equal distribution with values ranging from 0 (perfect equality) to 100 (perfect inequality); reference year: 2010 (Jordan), 2011 (India), 2014 (Nicaragua, UAE), 2015 (Botswana, Kenya), 2017 (Egypt, Greece, Spain), 2018 (Brazil, Colombia, Ecuador, Indonesia, Kyrgyzstan, Mexico, Peru, Thailand). g Linguistic diversity index is based on the population of each language spoken in the country as a proportion of the total population with values ranging from 0 (no diversity, everyone has the same primary language) to 1 (total diversity, no two people have the same primary language); reference year: 2009 (all). Geriatrician, Africa: Healthcare providers. . . are still not interested Organizational and Institutional Factors to know how to diagnose. They are interested to know Theme 3: Competing Health System Priorities about [dementia]. They think it is the hot topic they cannot At the organizational and institutional levels, nearly all experts touch. We need to remove this stigma from the healthcare noted the challenge of competing health systems priorities. providers themselves. Some examples provided of competing priorities included the health of younger people or pregnant women. Others suggested that dementia was not a priority because of a Theme 2: Late Presentation focus on infectious and other treatable diseases. In these Another prominent theme identified in the majority of interviews discussions of competing priorities, many participants noted was the issue of late presentation, where patients show up at the that these other health issues often take precedent over the doctor when they already have severe dementia and when it is aging population, which some explained shaped decisions about more challenging to address their needs. In some interviews, late resource allocation. Two experts in our study exemplified presentation was connected to lack of awareness, while in others, these challenges: the experts discussed issues such as access to care or the lack of expertise among general practitioners to diagnose dementia until Psychiatrist, Latin America: In our country these needs are not a later stages in the disease. In an example where late presentation priority because there are the needs of children, of pregnant women. was connected to a lack of awareness, a neurologist in our There is still no clear recognition of all the emergent needs that we study explained. are facing with the population’s aging. . . there are other problems that are a priority, like extreme poverty. When people are worried about what will they have to eat that day, or what their children are going to eat, they do not prioritize memory issues. Neurologist, Africa: By the time patients present, it’s rather late. . . by the time people come, they are often moderately advanced to advanced. There are some problems with that because people have Neurologist, Asia: We are grappling with infections and we lost the ability now to, say, for example, execute a will. are grappling with so many other treatable problems that Frontiers in Neurology | www.frontiersin.org 4 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis TABLE 2 | Participant demographics and practice characteristics. Psychiatrist, Asia: There are practically no specialists who work in this area. . . .there is no prestige in working with dementia, there are Region n no gerontologists in the whole country. . . in [[largest medical school in the country]] the topic of dementia gets 2 h of teaching. Demographic information (n = 20) Africa 4 Asia 6 Most participants also noted a need for more training focused Europe 2 on dementia, especially among general practitioners. Some Central/South America 6 respondents felt that working in dementia was not a popular Middle East 2 choice for clinicians in their setting, which is related to the Gender issues above regarding awareness and stigma among healthcare Female 9 personnel, while another expert related this to concerns about Male 11 lack of prestige for those who choose to work with the Primary specialty aging population. Geriatric medicine 3 Geriatric psychiatry 1 Community Factors Neurology 10 Theme 5: Social Determinants of Health Neuropsychology 4 At the community level, barriers identified fell within a Psychiatry 2 framework of social determinants of health, such as lack of access Years in clinical practice Mean (SD) to healthcare and geographic, socioeconomic and educational 21.3 (10.8) disparities. Access issues most participants raised included Practice Characteristics* both lack of access and differential access to dementia-specific healthcare. Reasons that emerged across interviews included Expert Practice Setting** n cost and lack of specialists, as noted above. Nearly every expert Public institution 8 reported geographic differences between rural and urban areas, Private institution 9 or differential access based on public vs. private healthcare Teaching hospital 13 systems. A neurologist illustrated this issue of both urban and Research institution or university 8 rural differences, as well as access to specialty hospitals. Day Care Center 1 % time dedicated to the following activities Mean % (SD) Neurologist, Middle East: Half of the country is in the cities, and the Patient care 39 (20) other half are living like [[Bedouins]] and all that, so they’re living Research 25 (18) in the rural areas. They have access to primary care, but not more Teaching & mentoring 22 (14) than that, not secondary or tertiary hospitals.?? Administration 11 (9) Other 2 (7) Number of patients newly diagnosed with MCI or Mean (SD) Related to dementia specialty care, some experts identified a lack Dementia per month at expert’s practice of access to key tools needed to do a diagnostic workup. These 25 (19) included lack of access to neuroimaging, cognitive assessment tools, imaging, and biomarker testing, with most experts * One provider did not provide responses to all non-demographic questions. ** Some providers indicated working in multiple practice settings. reporting a lack of standardized approach to dementia care. Neurologist, Europe: If you are lucky you will have access to a center that has a memory clinic. The majority of patients do not get this probably dementia would be marginalized when it comes type of attention. to healthcare. Others noted disparities due to socioeconomic, and educational Theme 4: Limited Dementia Capable Workforce factors, which included inadequate testing and validation in Many of the challenges raised by participants in our study patients’ languages and cultures. For example, centered around the healthcare workforce. Respondents from every region noted limited personnel and human resources Neuropsychologist, Latin America: For the population that has very required to address dementia diagnosis and care, including low socioeconomic conditions...accessing a specialized diagnosis, lack of neuropsychologists and neurologists. Some articulated like the one we do here in our fourth level hospital, is very difficult. this issue by providing an estimate of number of neurologists They do not come easily, almost never. . . the way we diagnose, it available across the entire population. A psychiatrist articulated does not include illiterate patients. Those with low education do not a theme that was echoed by many of the experts in our study, come to our center. Frontiers in Neurology | www.frontiersin.org 5 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis FIGURE 1 | Social ecological model of health. Public Policy Factors Neurologist, Asia: One thing which is very, very strong in our sector Theme 5: Lack of Policies and Healthcare Financing is that our family structure helps us in the management post- Emphasizing Dementia diagnosis...we don’t have dementia care centers...our dementia care Finally, at the public policy level, most experts identified system is the center of the patient’s home. lack of policy and healthcare financing as significant barriers, particularly regarding implementing new plans. Some experts Organizational and Institutional Factors discussed the lack of financing for training in specialties related Theme 2: Increase in Diagnostic Abilities to dementia, while others focused on the cost of care or the lack of There was wide variation across sites in what is included in the financing for research related to dementia. In some cases, policies diagnostic workup, which has been explored in a previous paper and plans existed on paper with no plan for implementation, as by our group (16). For a few experts, this involved adopting new exemplified by a neurologist: guidelines and standardized protocols for diagnostic assessment. Others referred directly to new diagnostic tests in use, the availability of neuropsychological testing, and new technology Neurologist, Africa: We have a National Dementia Plan, but, for its implementation, resources and stakeholder support is needed. We available such as MRI machines or biomarker testing. One need bigger and more global efforts. neurologist exemplified these changes, Neurologist, Europe: Now we have at the hospital a Lumipulse Facilitators machine and the cerebrospinal fluid biomarker determination Individual and Interpersonal Factors is. . . routinely tested at the hospital. Before, the cost of this Theme 1: Social and Cultural Infrastructure Around Caring biomarkers had to be covered by research. Now, they are covered by the national health care system. for Older Adults and Those With Dementia Some participants noted strengths of the social and cultural systems in their countries, for example, respect for the elderly, or Theme 3: New Personnel Training Initiatives availability of caregivers and family networks to support people Related to the above theme, in many of the discussions about with dementia, though these strengths were not identified by the the increase in diagnostic abilities, the experts connected these majority of participants. In some cases they connected the lack abilities to the more recent increase in personnel able to conduct of a public care infrastructure with the need for families to be diagnostic assessments, such as neuropsychologists. In some so involved, while in others they spoke of the culture of caring settings, new training programs were developed to build capacity. for older adults. A neurologist explained the role of the family Some noted an increase in providers able to do dementia structure as a strength in dementia care, diagnosis over the last 5–10 years. Many of these initiatives Frontiers in Neurology | www.frontiersin.org 6 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis TABLE 3 | Barriers to dementia assessment and care. Theme by social-ecological Description Exemplary quotes domain Individual and interpersonal factors Stigma and lack of awareness Dementia being seen as normal aging, • Geriatrician, Africa: I think the most important issue relating to the stigma in the and knowledge about dementia denial of the disease, ageism, stigma around Arabic word for dementia. This is a major barrier. The Arabic word for dementia is in the population and among dementia kharaf, okay? Kharaf means losing your mind. So still, physicians and some of the healthcare providers official translating groups, they use the word kharaf, which is like insane. • Psychiatrist, Central America: I believe that we need education for both the general population and health personnel. I believe that these are the two main barriers and that education would be the way to address this lack of awareness of the probem both in the population and in health personnel. • Neurologist, Middle East: People are in denial. They resist being sick. It’s part of the culture. They deny, they resist it with all their power until everything falls down. Late presentation Underdiagnosis, misdiagnosis, delayed • Neurologist, Asia: The problem is [they] come when they are in the late onset…the diagnosis family just thinks it’s normal for the elderly to forget. But, if the patient has a behavioral problem, it’s the problem for the family…So, when come to the doctor, usually, you know, the patient hopes that the doctor will give them one pill to fix everything, you know, a potion. • Neurologist, Middle East: I see that the family takes their family member late to the doctor…They deny that they have any problems. • Neurologist, Africa: Our health-seeking behaviors for most things, and especially things that have to do with cognition, we wait until the problem is a glaring one before we think, Oh, maybe I should go see the doctor. So, it is coming to the hospital late. It’s even by, again, I mentioned this earlier, the health professional identifying the problem late, when it’s already full-blown, and then thinking, Oh, maybe I should refer now. Organizational/institutional factors Competing health systems Communicable diseases, maternal health, • Neurologist, Africa: The healthcare system is not set up in a way to take into priorities infant health, hunger, poverty account these kinds of non-communicable diseases. We are still too basic. We are still in the communicable disease phase. That’s where all our focus, public health and so on, it is based. We are moving slightly toward non-communicable diseases, but it’s still extremely basic. So hypertension, diabetes, heart disease. Diseases of the nervous system are very, very low down on the priority list of the government, the policy makers, and so on.?? • Psychiatrist, Asia: Psychiatric and mental health areas are financed in this country based on the leftover principle. In other words, if there is some money left in the healthcare budget, it would rather be spent on gynecology, obstetrics, or cardiology services…Recently, our [[Minister of Health]] even expressed a wish to release patients with psychiatric disorders from acute wards to free up beds for observation of patients with infectious diseases, for example. • Neurologist, India: Dementia affects the geriatric group. Now we are grappling with infections and we are grappling with so many other treatable problems that probably dementia would be marginalized when it comes to healthcare. Limited dementia capable Lack of providers, lack of training • Neuropsychologist, Africa: So, it there’s one neurologist who’s based in the north workforce (particularly for general practitioners/primary of the country, another who’s based in the south of the country, and then myself care), lack of focus on dementia in the who’s the only neuropsychologist. So, there’s really a lack of personnel and human healthcare workforce resources. There’s a lack of training. For example, even nurses, you know, they have very little training about how to identify dementia, how to treat dementia or anything like that • Neuropsychologist, Europe: Across [[European country]] I do not think there are well-trained professionals…there are no professionals – neuropsychologists in [these] places unfortunately. They are not aware of these techniques. It’s something unknown to them. • Neurologist, South America: Psychiatrists in [[South American country]] have no training, they only assess behavioral symptoms. Community factors Social determinants of health Access to healthcare in general, specialty • Neurologist, Middle East: The general neurologist, there were like maybe two in Lack of access or differential care, or affordable care Geographic, the government hospital, two or three total more than 5 years ago. Maybe two or access to healthcare socioeconomic, education, literacy, three at most. And you have about five or six million people population, with • Geographic, socioeconomic, and culture, language absence] of access to the government hospital. So there was no way they can educational disparities treat these patients. There is no way. Maybe the one who has certain connections, the one that has powerful friends, there is no way you can treat that whole amount of patients (Continued) Frontiers in Neurology | www.frontiersin.org 7 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis TABLE 3 | Continued Theme by social-ecological Description Exemplary quotes domain • Neurologist, Europe: It will all depend on the resources that the referral center that you were assigned to has… If you are lucky you will have access to a center that has a memory clinic, and I insist, the majority of the patients do not get this type of attention. Regarding memory clinics, there are a lot of inequities regarding neuropsychological testing and biomarker access. Public policy Lack of policies and healthcare Financing, policies • Geriatrician, Latin America: Another barrier is the economical one, and there is financing emphasizing dementia where we come into the game. As we know, this is a disease for which the treatment is extremely expensive. At least here in [[country]] the cost can be around $150 to $300 dollars per month if patches or any type of drug for Alzheimer is used. • Neurologist, Africa: Is there a national policy to try and help with dementia? I do not think we have reached that point yet. • Neurologist, Europe: A major reason for these inequities is that the capacity of getting funding that each center has is tremendously unequal. • Geriatrician, Africa: MSPKR: Financing research for elderly health care like dementia is still, unfortunately, not of the priorities of the finance of research…I think it should be part of the local and international communities to put dementia care at the priorities of the financing. were enabling better use of cognitive tests and increased training with a training that I call ABC. This is basic training in which they in dementia. learn to administer the Minimental or the mini cognitive tests. They can administer them in their neighborhoods, in their families or in Neurologist, Latin America: The fact is that in the past there were their communities. When we make the detection campaigns, they not even dementia classes in the medical course. . . today geriatrics come with us. has a course in dementia, psychiatry has a course in dementia and in universities there is a course in dementia...It increases visibility. . . this I think is positive. . . it is giving more importance to Public Policy Factors the theme. Theme 5: Rise in Dementia Awareness and Awareness Campaigns Community Factors Most respondents noted that there have been changes in Theme 4: Increased Community Engagement awareness over the last 10 years even amidst an atmosphere Some interview participants noted an increase in community of stigma around the disease. For example, many participants engagement around caring for the elderly and specifically reported an increase in awareness campaigns and media around those with cognitive impairment. Those that articulated initiatives. A few reported the increase in awareness among this theme shared ways in which members of the community healthcare personnel, for example, primary care physicians who were getting involved to increase community engagement, for were more aware of when to refer patients, or the development of example, by participating in creating a dementia care plan, memory care sites that could accept referrals. increasing awareness about dementia through neighborhood participation, or becoming involved in implementing Geriatrician, Latin America: Media is covering this topic. Five years assessments. A neurologist explained, ago, they did not. I think that within the millennium development objectives, the benefit that has been obtained is that the [country’s] Neurologist, Asia: We are trying to include more people that are in population is more aware about the disease. People know a little the community into the dementia care plan. So, once this chief in more about alarm symptoms and would be willing to [go] to a the village should be included when we try to discuss policy to try to center that offers them help. increase dementia awareness. Others noted the increase in awareness at the population level, A geriatrician in our study explained the way former caregivers which is connected to the theme discussed above about the of people with Alzheimer’s disease were getting involved in increase in community engagement. his setting by learning by volunteering and learning how to implement cognitive tests: Psychiatrist, Asia: Normalization used to be the case in the past. Geriatrician, Latin America: We also have other kind of volunteers Like, in the 90s, everyone used to think that forgetfulness is a part that are not professionals. They have been caregivers of patients of normal aging, it is expected. But now, particularly in [[region with Alzheimer. We have a very solid group of people whose parents of country]], there are increasing social efforts about awareness of passed away and are now volunteering to teach other caregivers dementia, with the help of primary care physicians, psychiatrists, how to take care of patients. At the same time, they are receiving and neurologists; so other medical professionals are largely aware training on how to detect Alzheimer. We have provided them all of what dementia is. Frontiers in Neurology | www.frontiersin.org 8 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis TABLE 4 | Facilitators to dementia assessment and care. Theme by social-ecological Description Exemplary Quotes domain Individual and interpersonal factors Social and cultural attitudes around Cultural infrastructure around caring for • Neurologist, Asia: So I think in most areas, [the] care model is a bit like as a caring for older adults older adults; Caregiver/family/patient family unit, meaning that – one thing to note that in Taiwan, almost 90 percent of support available for people with our patients are never institutionalized during the dementia disease process. It’s a dementia/older adults very stigmatic thing regarded as the son and daughter failed the parents…in a more rural area, they might take care as a village…the whole village, all the elders that are healthy would take care of the elders that are less healthy, or the village would take care of them. So you do not own a particular elder – you own every elder. • Psychiatrist, Africa: What I can say is working well is care because of the sculpture of our family system. You know, we tend to care for our own, so we tend to do – you know, if your grandmother has dementia or your great aunt has dementia, chances are that they will never go without care because we care for our own at home. So, I think that’s the good thing. Organizational/institutional factors Increase in diagnostic abilities Increase in specialists, more testing • Geriatrician, Asia: 20 years ago, physicians who went oversea came back to available, more technology available (but adapt and validate various cognitive tests in [Asian country] versions. Most work mostly focused on specialty centers) were confined in specialized fields [like neurology]. Even among neurologists or psychiatrists, there were a few who took interest in dementia. Ten years ago, people grew more interested in dementia. There have been more tests and research which combine clinical and biomarkers such as CSF biomarker, PET Scan. The past 5 years, I feel that cognitive assessment moved to a larger circle of medicine. It is talked about and put in the undergraduate curriculum. Family physicians talk about it. Other disciplines also cares more about it. [The ministry] supports public screen program and referral track. Systems are linked and have become more supportive. • Neurologist, Middle East: The number of physician neurologists were less than 10 five years ago. Now we are about 60, so that’s a big improvement. Now, patients are getting much more accessibility to neurologists. They did not have that luxury before. • Neurogeriatrician, South America: In these last 5 years, more trained neuropsychology professionals have arrived. Now there is more knowledge of the tests. New personnel training initiatives Increased initiatives to train more clinicians in • Geriatrician, Asia: 20 years ago…most work [was] confined in specialized field dementia-specific topics [like neurology]. Even among neurologists or psychiatrists, there were a few who took interest in dementia. 10 years ago, people grew more interest in dementia. There have been more tests and research…the past 5 years, I feel the cognitive assessment move to a larger circle of medicine. It is talked about and put in undergraduate curriculum. Family physicians talk about it. Other disciplines also care more about it. [The ministry] supports public screen program and referral track. Systems are linked and become more supportive.? • Neurologist, Latin America: In the past there were not even dementia classes in the medical course, this appeared later, I was one of the initiators, today the geriatrics has a course in dementia, psychiatry has a course in dementia and in universities there is a course in dementia. We have a course on dementia at congresses. It increases visibility. This occurs at our university and also at other universities. [This university] is a knowledge generating center, and this is spreading and all doctors end up knowing more dementia. And this is very important. Community factors Increased community engagement Community engagement or dissemination of • Neurologist, Asia: At least the few areas that I work at, they can approach the knowledge about dementia chief of the community center. So you usually have a chief, like a village chief…there would be this person that’s like responsible for the community, and then organize events, like be responsible for the local community center. So question, and you ask them, right - okay, so who is 65 and above in your community, and who do you think has a concern of a cognitive kind? Public policy factors Rise in dementia awareness and Media, change in awareness, increased • Neurologist, Africa: I think there has been an attempt from our side, also, as awareness campaigns community engagement neurologists, to try and help people to understand this condition, and I think that has helped medical students, newly qualified doctors, residents in training, and physicians to be more aware of this diagnosis. National and international Coordinated policy efforts and involvement • Psychiatrist, Latin America: We collaborate with the national Alzheimer’s collaborations in international research initiatives, Association and the national Alzheimer’s Federation. We participated in many of collaborations, research support, their activities directed toward family members and the general public. Also, in radio international training, and new initiatives/new and television campaigns directed at to general public, for example, in September. policies Frontiers in Neurology | www.frontiersin.org 9 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis Theme 6: National and International Collaborations Raising Dementia Awareness While Some experts in our study suggested that there has been Building on Social and Cultural Strengths an increase in both national and international collaborations Awareness (17, 20, 21), knowledge (22), and stigma are around dementia. While these collaboration took different forms commonly cited barriers to dementia prevention, treatment, depending on the country, some examples that participants and care in the global health context (17, 23, 24). Findings provided included coordinated policy efforts, involvement in from our study also reinforced these challenges. We similarly international research initiatives, international training, and identified the need for more dementia awareness to address new policy initiatives. Some examples of the approaches issues around stigma or seeing dementia as part of normal to building collaborations both nationally or internationally aging (21) that may result in late presentation, as many research included the creation of national dementia plans, collaborations participants suggested. However, we also identified social and with associations or NGOs, international research consortiums, cultural strengths, such as approaches to caring for older and national health surveys. adults and ways that cultural leaders have been engaged, that may provide a foundation for more effective community-based work building dementia awareness. Supporting this approach, DISCUSSION previous work in both epidemiological and clinical research has emphasized the importance of recognizing diversity in In this study, we identified facilitators and barriers to dementia sociocultural factors across cultures and societies, and how these assessment and care based on the experiences of dementia shape people’s understanding of dementia and prevention and experts in global health settings. Prior global health studies in care management interventions (20). Tailored interventions that dementia have focused on the epidemiology of dementia (1), center the experiences and voices of local communities as well as emphasizing identifying disease frequencies across regions, and geopolitical and social contexts are needed to develop awareness have looked at risk factors such as education, socioeconomic and produce a more targeted response in LMICs (9, 25). status, and access to healthcare (17). Other work has focused Furthermore, we found that the need for dementia awareness on cognitive testing, and its cultural or linguistic applicability extended to generalist healthcare providers. Focusing awareness (16, 18). Our findings are confirmatory of many issues raised campaigns on non-expert healthcare personnel is an important in prior studies, including the 2021 World Alzheimer’s Report next step for improving dementia care globally. However, we (19). These include challenges such as limited access to healthcare also found that experts did identify improvements in dementia resources, including lack of clinicians, the limited primary awareness over the last 10 years, offering examples of new care infrastructure, and the need for more clinicians skilled educational campaigns, media approaches, and community in dementia diagnosis; challenges doing diagnostic testing in outreach that set the stage for building more widespread populations with low education; cultural factors; the role of understanding of dementia. comorbid conditions; and costs of doing dementia diagnosis. However, we also note that our qualitative approach to Building Dementia Care Workforce interviewing dementia experts in the global health context is unique, and using their voices to illustrate previously-identified Capacity Across the Health System, issues provide more nuance and gives voice to the on-the- Including Generalists, Given Disparities in ground perspectives. Furthermore, while other studies have Access to Care looked primarily at challenges and barriers, we also present In our study, most participants identified the need for a more facilitators and strengths that emerged in our interviews, though robust dementia care workforce and reported challenges that others have noted similar opportunities as we found, such exist around lack of training and capacity to diagnose and care as improving medical education and the need to build more for people with dementia. Although much of the literature on the public awareness. Our study used a qualitative approach to dementia care workforce focuses on HICs (26), recent work has gain the global perspective of experts who are on-the-ground in discussed the need for “task shifting” in the global health setting- health systems. the concept of moving dementia-related tasks from expert health In 2013, the G8 summit committed to focus on dementia as a providers to health workers with less training, such as community global health priority, and emphasized the importance of a multi- health workers (27, 28). These types of workforce solutions can sectorial approach to addressing dementia, particularly in LMICs. help to address the need for dementia capable providers (13). Our findings identify challenges that cross multiple sectors, Furthermore, much work has emphasized the role of primary while strengths identified indicate a multi-sectorial approach to care providers in dementia care in HICs, including the barriers addressing the challenge of dementia. We identified the following faced as well as attitudes about dementia care (14, 15, 29, 30). key areas based on our results: (1) raising dementia awareness Given the disparities we identified in access to specialty care, while building on social and cultural strengths; (2) building building dementia care capacity among generalist clinicians may dementia care workforce capacity across the health system, improve dementia care more broadly in LMICs. Emphasis is including generalists, given disparities in access to specialty care; needed on incentives to bring generalists the education and and (3) building and strengthening international collaborations training they need to do dementia-capable work with patients to support the integration of new tools, policies, and approaches (31). Finally, challenges around training go hand-in-hand with to address gaps in dementia assessment and care. the need for feasible dementia assessment tools (16). Work Frontiers in Neurology | www.frontiersin.org 10 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis is needed to develop the healthcare infrastructure related to have transcripts of their interviews shared. However, the authors dementia assessment tools that can be easily used and interpreted may make summary data available on a case-by-case basis as by generalists (16). allowed by human subjects policies. Requests to access the data should be directed to the corresponding authors. Building and strengthening international collaborations to support the integration of new approaches, tools, and policies to improve dementia assessment and care globally. ETHICS STATEMENT Experts in our study noted deficiencies in national policies The studies involving human participants were reviewed and around dementia. However, many also identified the approved by the University of California San Francisco. Written development of international collaborations as a strength informed consent from the participants was not required that can be built on. International collaborations and global to participate in this study in accordance with the national coordination is important both for inclusiveness in research legislation and the institutional requirements. to ensure representative research cohorts, as well as to address the unequal impact of dementia across the globe (32). A key example is Alzheimer’s Disease International’s coordination of AUTHOR CONTRIBUTIONS the development of national dementia care plans and writing annual reports about dementia in LMIC. Other international ABS designed and conceptualized study, analyzed and consortiums are also working to set research priorities, improve interpreted the data, drafted and revised the manuscript diagnosis and care, and both address and record global challenges for intellectual content, obtained funding, and major role in the related to dementia care (2). acquisition of data. TA-R designed and conceptualized study, analyzed and interpreted the data, and revised the manuscript Limitations for intellectual content. ET, SP, MP-C, SK, LM-M, MO, and MD This study has several limitations. (1) We were unable to designed and conceptualized study, major role in the acquisition sample from all LMICs meeting the inclusion criteria, though of data, revised the manuscript for intellectual content. SZ, we had regional representation. (2) We relied on interviews AA, and HI had major role in the acquisition of data and with one to two neurology experts from each country sampled, revised the manuscript for intellectual content. CG had major and therefore cannot generalize these results. More work and role in acquisition of data and manuscript preparation. BM a larger sample are needed. (3) Participants in our study were revised the manuscript for intellectual content. VV designed not asked specifically about the different levels of the social and conceptualized study and revised the manuscript for ecological model, as the model was used as a way to organize intellectual content. KP designed and conceptualized study, inductive findings of our exploratory study. It is possible the obtained funding, and revised the manuscript for intellectual experts would have identified additional barriers an facilitators if content. All authors contributed to the article and approved the the interview had been conducted in a systematic way using this submitted version. model. (4) We limited our interview to dementia experts, though we asked about challenges in non-expert settings. Future work is needed with broader representation of generalists, community FUNDING health workers, and other informants in these settings to identify whether their perceptions are consistent with expert perspectives This study was supported by the Global Brain Health Institute, and to identify additional facilitators and barriers. (5) Finally, the UCSF Population Health & Health Equity Scholars Program, this study was not designed to compare and contrast differences the National Institute on Aging (K01AG059840-01A1), the across countries, and particularly did not look at differences National Heart, Lung, and Blood Institute (K23HL148530), between MIC and LICs. Future work would sample from more and the National Institute of Neurological Disorders and LICs and conduct a comparative analysis. Stroke (UG3NS105557-01). Future Directions Findings from this study provide insights for prioritizing ACKNOWLEDGMENTS dementia assessment and care capacity-building in LMICs as a We are grateful to the participants in this study for sharing their global health priority. We also identified ways that tailored public experiences and knowledge. health approaches can strengthen dementia assessment and care at the individual, community, national, and multi-national levels. SUPPLEMENTARY MATERIAL DATA AVAILABILITY STATEMENT The Supplementary Material for this article can be found The raw qualitative data is not available publicly due to the need online at: https://www.frontiersin.org/articles/10.3389/fneur. to protect the privacy of interviewees, who did not consent to 2022.769360/full#supplementary-material Frontiers in Neurology | www.frontiersin.org 11 March 2022 | Volume 13 | Article 769360 Bernstein Sideman et al. Global Dementia Assessment and Diagnosis REFERENCES 19. World Alzheimer Report. Journey Through the Diagnosis of Dementia. Alzheimer’s Disease International, London, United Kingdom (2021). 1. Prince MJ, Wimo A, Guerchet MM, Ali GC, Wu YT, Prina M. World Available online at: https://www.alzint.org/u/World-Alzheimer-Report-2021. Alzheimer Report 2015. The global impact of dementia: An analysis of pdf (accessed February 7, 2022). prevalence, incidence, cost and trends. Alzheimer’s Disease International. 20. Alladi S, Hachinski V. 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Global perspectives on brief cognitive assessments Copyright © 2022 Bernstein Sideman, Al-Rousan, Tsoy, Piña Escudero, Pintado- for dementia diagnosis. J Alzheimers Dis. (2021) 82:1001–13. Caipa, Kanjanapong, Mbakile-Mahlanza, Okada de Oliveira, De la Cruz-Puebla, doi: 10.3233/JAD-201403 Zygouris, Ashour Mohamed, Ibrahim, Goode, Miller, Valcour and Possin. This is an 17. Nitrini R, Barbosa MT, Dozzi Brucki SM, Yassuda MS, Caramelli P. Current open-access article distributed under the terms of the Creative Commons Attribution trends and challenges on dementia management and research in Latin License (CC BY). The use, distribution or reproduction in other forums is permitted, America. J Glob Health. (2020) 10. doi: 10.7189/jogh.10.010362 provided the original author(s) and the copyright owner(s) are credited and that the 18. Prince M, Acosta D, Chiu H, Scazufca M, Varghese M. Dementia diagnosis original publication in this journal is cited, in accordance with accepted academic in developing countries: a cross-cultural validation study. Lancet. (2003) practice. No use, distribution or reproduction is permitted which does not comply 361:909–17. doi: 10.1016/S0140-6736(03)12772-9 with these terms. Frontiers in Neurology | www.frontiersin.org 12 March 2022 | Volume 13 | Article 769360