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Prevalence of mild cognitive impairment and dementia in older non-western immigrants in the Netherlands: a cross-sectional study
Abstract
Objective:
In the Netherlands, persons of Turkish, Moroccan and Surinamese descent form the largest groups of non-western immigrants. A high prevalence of mild cognitive impairment (MCI) and dementia has been described in immigrant populations in the United States of America and the United Kingdom. We determined the prevalence of MCI and dementia in older community-dwelling adults from the largest non-western immigrant groups in the Netherlands.
Methods:
Participants, aged 55 years and older, of Turkish, Moroccan (Arabic or Berber), Surinamese (Creole or Hindustani) or Dutch descent were recruited via their general practitioners. Cognitive deficits were assessed using the Cross-Cultural Dementia screening instrument, which was validated in poorly educated people from different cultures. Differences in prevalence rates of MCI and dementia between the immigrant groups and a native Dutch group were analysed using chi-square tests.
Results:
We included 2254 participants. Their mean age was 65.0 years (standard deviation, 7.5), and 44.4% were male. The prevalence of MCI was 13.0% in Turkish, 10.1% in Moroccan-Arabic, 9.4% in Moroccan-Berber and 11.9% in Surinamese-Hindustani participants, compared to 5.9% in Surinamese-Creoles and 3.3% in native Dutch. The prevalence of dementia was 14.8% in Turkish, 12.2% in Moroccan Arabic, 11.3% in Moroccan Berber and 12.6% in Surinamese-Hindustani participants, compared to 4.0% in Surinamese-Creoles and 3.5% in native Dutch.
Conclusions:
MCI and dementia were three to four times more prevalent in the majority of non-western immigrant groups when compared to the native Dutch population. These differences are important for planning and improving healthcare facilities.
... Therefore, the interviews and focus groups will be repeated with persons with dementia and informal caregivers with a migration background to ensure the attributes and levels are applicable to this part of society as they have a higher risk for dementia compared with people with non-migration background. 12 Attribute identification for persons with dementia and informal caregivers with a migration background To identify care preferences and needs of persons with dementia and informal caregivers with a migration background, semistructured interviews will be performed across the Netherlands. Participants will primarily include persons with dementia and informal caregivers with a Turkish, Moroccan or Surinamese background as these are the largest groups of non-western immigrants in the Netherlands and they are known to have a high risk for developing dementia. ...
... Participants will primarily include persons with dementia and informal caregivers with a Turkish, Moroccan or Surinamese background as these are the largest groups of non-western immigrants in the Netherlands and they are known to have a high risk for developing dementia. 12 People living with dementia who do not speak Dutch as their first language will be welcome to participate. ...
... The interviews will be conducted in the preferred language of the participants: Turkish, Moroccan-Arabic, Tarifit or Dutch. 12 Interviews will be conducted by trained bilingual interviewers. Persons with dementia and informal caregivers will be interviewed separately. ...
Introduction
Ageing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and informal caregivers. By providing insight into people’s preferences, discrete choice experiments (DCEs) can help develop consensus between stakeholders. This protocol paper outlines the development of a Dutch national study to cocreate a healthcare package design methodology built on DCEs that is person-centred and helps support informal caregivers and persons with dementia to AIP. A subpopulation analysis of persons with dementia with a migration background is planned due to their high risk for dementia and under-representation in research and care.
Methods and analysis
The DCE is designed to understand how persons with dementia and informal caregivers choose between different healthcare packages. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs and preferences of persons with dementia and informal caregivers. The DCE will identify individual and joint preferences to AIP. The relative importance of each attribute will be calculated. The DCE data will be analysed with the use of a random parameters logit model.
Ethics and dissemination
Ethics approval was waived by the Amsterdam University Medical Center (W23_112 #23.137). A study summary will be available on the websites of Alzheimer Nederland, Pharos and Amsterdam Public Health institute. Results are expected to be presented at (inter)national conferences, peer-reviewed papers will be submitted, and a dissemination meeting will be held to bring stakeholders together. The study results will help improve healthcare package design for all stakeholders.
... Zealand (Parlevliet et al., 2016). Several cross-sectional studies suggest that older people have an increased risk of MCI and dementia (Jia et al., 2020;Wang et al., 2019;Mavrodaris et al., 2013). ...
... Several contributory factors have been identified as exacerbating the risk of MCI. For example, chronic physical health problems are reported in up to one-third of cases that affect cognition over time (Mavrodaris et al., 2013;Parlevliet et al., 2016). Unfortunately, these problems are often linked to significant physical morbidity and death (Hussin et al., 2019). ...
... Despite research showing that good nutrition and physical activity protect against cognitive decline (Callow & Alpass, 2014;Vanoh et al., 2017). On the other hand, studies have shown that poor physical health and an inactive lifestyle can make some people vulnerable to developing MCI as part of the migration process (Parlevliet et al., 2016). A closer look at this issue in a Netherlands study points to diabetes, hypertension, and cardiovascular disease contributing to cognitive decline (Agyemang et al., 2014). ...
We do not remember days; we remember moments. The richness of life lies in memories we have forgotten." Cesare Pavese, The Burning Brand: Diaries, 1935-1950. Mild cognitive impairment (MCI) is recognized worldwide as a serious health issue and a grey area between intact cognitive abilities and mild impairment. MCI is often referred to as the stage between normal ageing and early cognitive decline. This study aimed to grasp the meaning of the lived experience of older migrants with MCI. The goal was twofold: first, to build a deep understanding of what it means for older migrants to live with MCI and, secondly, to learn from their stories of moments of their lives when their cognition began to deteriorate. Older migrants with MCI have multifaceted stories to share, which is essential for gerontology professionals to recognize and learn lessons from these experiences. Many may have varying levels of insight into their cognitive function and can recall specific moments of such experiences. Hermeneutic phenomenology was used to explore older migrants' lived experiences of MCI in Aotearoa, New Zealand, which is based on the philosophical foundations of the 20th-century philosopher Martin Heidegger [1889-1976]. By networking with professionals from public services, non-governmental organisations, and community organisations, I connected with older migrants from various countries of origin. After recruitment, primary data were electronically and manually analyzed to inform participants' lived experience with MCI. This research presents the findings from 13 women and two men aged 56-83 years who live in the Auckland community. Their data was crafted into stories with a hermeneutic perspective, divided into four chapters: being thrown into distressing events, being connected with others, forgetting every day, and knowing how to make sense of MCI. Reflecting on the findings reveals the stress and long-term effects of MCI on older migrants' health and well-being and uncovers their strategy to make sense of living with MCI. MCI is sometimes perceived as a typical ageing problem. Still, some older migrants and their relatives feel differently, highlighting the need for more help, support, education and understanding of this condition. Family trauma, relationship complications, retirement problems, physical health problems, social isolation, and acculturation, are shown to affect the memory of older migrants. Their stories also reveal that socialization, prayer, and interaction with different cultural groups are crucial to keeping their memory supple. Lack of cultural awareness, and stigma concerning MCI contribute to embarrassment or frustration and fear of living with MCI. The stories of older migrants showed how they grasped memory problems and identified their self-management strategies to improve their health and memory. ii
... 34,35 This included the translation of study materials into the participants' preferred languages, advertising through flyers in English and the target population's language, and provid-ing the option for interventions to be delivered in participants' preferred language. [34][35][36]38,41,42,53,55,56,58,[61][62][63][64][65][66][67] Thirteen articles reported the use of bilingual and bicultural workers, including employing bilingual research assistants, having participants assessed by a physician who spoke their language, and making use of race-concordant community health workers 38,51,53,54,57,58,61,64,[68][69][70][71][72] (see Table 1). ...
... 34,35 This included the translation of study materials into the participants' preferred languages, advertising through flyers in English and the target population's language, and provid-ing the option for interventions to be delivered in participants' preferred language. [34][35][36]38,41,42,53,55,56,58,[61][62][63][64][65][66][67] Thirteen articles reported the use of bilingual and bicultural workers, including employing bilingual research assistants, having participants assessed by a physician who spoke their language, and making use of race-concordant community health workers 38,51,53,54,57,58,61,64,[68][69][70][71][72] (see Table 1). ...
... 89 As underscored in several systematic reviews, 90 HICs in which many ethnic minority communities overwhelmingly seek basic and primary care needs through such settings. 19 Additionally, employment of researchers or clinical staff who spoke the participants' primary language 38,51,53,54,57,58,61,64,[68][69][70][71][72] or translation of study materials 58 were key ways in which researchers made participation in dementia research accessible to ethnically diverse people. ...
Introduction:
Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help-seeking and care. Despite increasing population diversity in high-income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and analysis of variables relevant to, ethnic minorities in dementia studies to make recommendations for consistent practice in dementia research.
Methods:
We did a scoping review, searching Embase, PsycINFO, Medline, CENTRAL, and CINAHL between January 1, 2010 and January 7, 2020. Dementia clinical and cohort studies that actively recruited ethnic minorities in high-income countries were included. A steering group of experts developed criteria through which high-quality studies were identified.
Results:
Sixty-six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty-three studies translated or used a culturally validated instrument. Twenty-three articles conducted subgroup analyses based on ethnicity. Six high-quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia.
Discussion:
We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.
... Cultural diversity also affects dementia care and care delivery in complex ways (e.g., cross-cultural performance of clinical tools, disparities in clinical outcomes between ethnic groups). (15)(16)(17)(18)25,(37)(38)(39)(40)(41)(42)(43) Case management is a dynamic process shaped by the cultural past of its users and providers. (9,(44)(45)(46)(47)(48)(49)(50)(51)(52)(53)(54)(55)(56) However, cultural studies of dementia and case management are conducted in specific settings with specific populations (e.g., Vietnamese Americans in the United States (21,27) or non-Western immigrants in the Netherlands (18) ) and the conclusions drawn are likely not transferable elsewhere. ...
... (15)(16)(17)(18)25,(37)(38)(39)(40)(41)(42)(43) Case management is a dynamic process shaped by the cultural past of its users and providers. (9,(44)(45)(46)(47)(48)(49)(50)(51)(52)(53)(54)(55)(56) However, cultural studies of dementia and case management are conducted in specific settings with specific populations (e.g., Vietnamese Americans in the United States (21,27) or non-Western immigrants in the Netherlands (18) ) and the conclusions drawn are likely not transferable elsewhere. The present pilot study, then, was a first insight into the primary care dementia case management of culturally diverse patients and their informal caregivers. ...
... The quantitative differences observed between Canadianborn vs. foreign-born individuals were reminiscent of ethnic disparities reported elsewhere in the world. (15)(16)(17)(18)(19)(31)(32)(33)(38)(39)(40)88) Our study innovates by systematically examining the needs of patients and caregivers of different ethnic backgrounds. However, in our case, such disparities may be explained in part by the presence of confounders. ...
Context:
The Canadian reality of dementia care may be complicated by the cultural diversity of patients and their informal caregivers.
Objectives:
To what extent do needs differ between Canadian- and foreign-born patients and caregivers? What are their experiences with the illness in primary care case management?
Methods:
Mixed methods, sequential explanatory design (a cross-sectional study, followed by a qualitative descriptive study), involving 15 pairs of patients and caregivers.
Results:
Foreign-born patients had more needs compared to their Canadian-born counterparts. Foreign-born caregivers reported more stress, more problems, and increased need for services. However, the reported experiences of Canadian- vs. foreign-born individuals were similar.
Conclusion:
The results remain hypothesis-generating. The present pilot illustrated the suitability of mixed methods to this area of study, which deserves further investigation to better serve all members of a population already vulnerable by age and disease.
... As the number of older people with a migration background is growing in Flanders, so too is the share of elders of Moroccan origin (Lodewijcks, 2007(Lodewijcks, , 2013. This development has led to an expected increase in the prevalence of age-related conditions like dementia within this group (Parlevliet et al. 2016). Although the experience of dementia has particular universal aspects, it is important to understand how cultural and religious factors come into play as well (Johl et al., 2015). ...
... Given the difficulty of diagnosing dementia in EM seniors, it remains a challenge to have a correct estimation of dementia prevalence (Nielsen et al., 2010). Recent research by Parlevliet et al. (2016) using culture sensitive developed diagnostic tools shows a higher prevalence of dementia among non-European elders in the Netherlands. The prevalence of elders with Moroccan background was four time higher than native elders. ...
... The above suggest that the Moroccan seniors, the biggest subgroup among the ethnic minority elders in Belgium, is growing old and have an expected high risk for dementia (Lodewijcks E, 2013; Parlevliet et al. 2016). To our knowledge, there is no data available on how caregivers experience dementia and its consequences within the Moroccan population in Belgium. ...
For many families employing a care worker woman from Poland, Hungary or any other Eastern European country who is looking after the elderly person 24 hours a day is the only possibility to avoid taking the elderly to residential care. Although most of the care workers have a legal stay, their working conditions are either illegal or do not meet the standards of international and national legislation concerning working hours, payment etc. But this group of care workers in private households does not complain or protest and very often they are even hidden by their employers. From the perspective of social work as a human rights profession we have to ask ourselves how the women themselves experience their situation and what kind of interventions will be most adequate. This article presents the findings of a project focussing on migrant domestic care workers in Germany.
... Using the information provided on numerators and denominators we calculated ORs for the migrant groups examined by Parlevliet et al. (2016). We considered the ORs adjusted for age, because of the 10-year age-strata used in the article. ...
... As shown in Table 1, we retrieved six prevalence studies and one incidence study (Pham et al., 2018). Five were performed in the UK, the remaining in Norway (Diaz, Kumar, & Engedal, 2015) and The Netherlands (Parlevliet et al., 2016). ...
... Three population surveys obtained a high score for quality (Adelman et al., 2011;Parlevliet et al., 2016;Richards et al., 2000). Two studies failed to adjust the results for age differences and were considered to be of medium quality (Livingston et al., 2001;McCracken et al., 1997). ...
Background
To provide an overview of epidemiological studies of dementia among migrant groups in Europe and to estimate their pooled odds ratio (OR) v. the reference population.
Methods
Search for articles reporting on incidence or prevalence of dementia among ethnic minorities and migrants in Europe, published before 21 December 2018. We performed several meta-analyses, using a random-effects model, and, when there was no evidence of heterogeneity, a fixed-effects model. We distinguished between all migrants, African-Europeans and Asian-Europeans.
Results
We retrieved five population-based surveys and two health care record studies. The latter included one incidence study, the remainder were prevalence studies. The meta-analysis of all studies yielded a pooled OR, adjusted for age and sex, of 1.73 (95% CI 1.42–2.11) for dementia in all migrant groups. However, the pooled OR of population surveys (3.10; 95% CI 2.12–4.51) was significantly higher than that for the health care record studies (OR 0.94; 95% CI 0.80–1.11). The pooled ORs for African-Europeans and Asian-Europeans, based on population surveys, were 2.54 (95% CI 1.70–3.80) and 5.36 (95% CI 2.78–10.31), respectively.
Conclusions
The discrepancy between health care record studies and population surveys suggests that many migrants remain undiagnosed. Migrants from Asia and Africa seem to be at significantly increased risk of dementia in Europe. Since the prevalence rates in their countries of origin are generally not higher than those for natives in Europe, there may be a parallel with the epidemiology of schizophrenia.
... Despite their higher vulnerability to developing dementia (Parlevliet et al., 2016), related to risk factors such as diabetes, cardiovascular diseases and low literacy (Bindraban et al., 2008;Parlevliet et al., 2016), EM persons living in Europe utilize health care services less frequently than the native population (Schmachtenberg et al., 2020b). EM persons with dementia use less long-term health care, such as nursing homes (Alzheimer Nederland, 2014;Stevnsborg et al., 2016). ...
... Despite their higher vulnerability to developing dementia (Parlevliet et al., 2016), related to risk factors such as diabetes, cardiovascular diseases and low literacy (Bindraban et al., 2008;Parlevliet et al., 2016), EM persons living in Europe utilize health care services less frequently than the native population (Schmachtenberg et al., 2020b). EM persons with dementia use less long-term health care, such as nursing homes (Alzheimer Nederland, 2014;Stevnsborg et al., 2016). ...
Aims
This study explored what informal caregivers of ethnic minority (EM) persons with dementia in the Netherlands perceive as culturally accessible health care and nurses' perceptions of how cultural competence can be improved to facilitate access to health care for EM persons with dementia and their informal caregivers.
Design
Qualitative description research with semi‐structured individual interviews and focus group discussions (FGDs).
Methods
Semi‐structured interviews with 15 nurses and 6 informal caregivers provided input for two FGDs with nurses about the need to strengthen their cultural competence to improve access to health care for EM persons with dementia and their informal caregivers. Interview data were collected between September 2020 and April 2021 in the Netherlands. Focus group discussion data were collected between June and September 2021 in the Netherlands.
Results
Nurses and informal caregivers experienced difficulty building and maintaining a relationship. Contrary to informal caregivers' experiences, nurses felt a shared cultural background with the persons with dementia and informal caregiver is necessary. Although nurses acknowledged the importance of cultural knowledge, cultural skills, in particular, were mentioned as needing improvement. Examples are mapping involved family members and their roles, asking the right questions and letting go of personal judgements. Nurses frequently mentioned stereotypical thinking and seeing ‘the other’ as different, and collaboration with(in) family proved difficult for informal caregivers and nurses.
Conclusion
Strengthening cultural skills will contribute to facilitating better access to cultural appropriate health care for EM persons with dementia and their informal caregivers.
Patient or Public Contribution
No patient or public contribution.
Impact
This study explores what is perceived as culturally accessible health care and what nurses need to improve their cultural competence. We show that strengthening nurses' cultural competence by addressing which skills should be improved can improve access to health care for EM persons with dementia and their informal caregivers.
... In the Netherlands, more than 10% of people with dementia have a migrant background. In the next decade, the number of people with dementia from migrant and ethnic minority (MEM) groups is expected to rise twice as fast as among native Dutch people (Alzheimer Nederland, 2014;Parlevliet et al., 2016;Selten et al., 2021). This increase is caused by an ageing of the population, a limited 'cognitive reserve' and higher prevalence of risk factors such as high blood pressure and diabetes (Aichberger et al., 2010;Parlevliet et al., 2016;van Campen & Goudsmit, 2016; van Laer et al., 2020). ...
... In the next decade, the number of people with dementia from migrant and ethnic minority (MEM) groups is expected to rise twice as fast as among native Dutch people (Alzheimer Nederland, 2014;Parlevliet et al., 2016;Selten et al., 2021). This increase is caused by an ageing of the population, a limited 'cognitive reserve' and higher prevalence of risk factors such as high blood pressure and diabetes (Aichberger et al., 2010;Parlevliet et al., 2016;van Campen & Goudsmit, 2016; van Laer et al., 2020). Persons with dementia and their families from MEM groups often struggle with an unfamiliarity with Dutch healthcare, limited health literacy, a language barrier and cultural differences (van Campen & Goudsmit, 2016). ...
Introduction: People with dementia from migrant and ethnic minority (MEM) groups often receive suboptimal care. Differences in perceptions, values and preferences, and linguistic barriers may complicate communication between persons with dementia, their families and healthcare professionals. Metaphor analysis can provide unique insight into the lifeworld of people with dementia and their informal caregivers. This study identified the metaphors with which informal caregivers of persons with dementia from diverse cultural-linguistic backgrounds understand and discuss dementia. Methods: We conducted 7 focus groups (n = 42) and 12 interviews (n = 13) with informal caregivers of persons with dementia living in the Netherlands from six different cultural backgrounds: Dutch, Chinese, Turkish, Moroccan, Surinamese, and Dutch-Antillean. Interviews, in the native tongue of participants, were analyzed for the presence of direct and indirect metaphor. Results: The results indicate a conspicuous lack of metaphor to reflect on the nature and experience of having dementia. Two typical conceptual metaphors in health communication (journey/war) are virtually absent in all MEM groups. Furthermore, results suggest a one-sided and negative outlook on dementia, with an emphasis on persons with dementia as ‘childlike’ or ‘crazy’. Conclusion: Our results suggest a lack of extensively available sophisticated (metaphorical) language to consider daily life with persons with dementia. There is a clear need to address the stigma and lack of medical knowledge surrounding dementia in these MEM groups and to carry out more cross-linguistic and cross-cultural research to explore which metaphors aid understanding and lead to the empowerment and restoration of self-worth of people with dementia.
... Ethnicity and native language significantly influence neuropsychological test performances [4], and this can affect the result of a global cognitive assessment. In a Dutch cohort study, even dementia and mild cognitive impairment (MCI), which is a clinical condition that often precedes dementia [5], resulted in more prevalent in the majority of non-western immigrant groups compared to the native population [6]. ...
... On this topic, also the review of 2017 of O' Driscoll et al. [12] showed differences in cut-offs within the same country; for example, thirteen validation studies conducted in Chinese and Malay cohorts reported very heterogeneous cut-offs to detect MCI, which ranged from 13 to 26. Another example [5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22][23] and by inter-regional differences. The items of MoCA which have required a much deeper adaptation were, as expected, those concerning language (particularly phonemic fluency and sentence repetition) and memory, where some changes were reported in three quarters of the versions. ...
This study provides a systematic review of linguistically and culturally adapted versions of the original Montreal Cognitive Assessment (MoCA) full version. Adapted versions were identified through a systematic review in 3 databases and on the MoCA website. Overall, 86 culturally different versions of MoCA are available: 74 versions on the MoCA website (25 of them have a corresponding paper concerning the translation process found with the systematic review) and 12 additional versions identified only with the search in biomedical databases. Culturally different adapted versions of the MoCA were unevenly distributed across different geographic areas. The quality of the process of cultural adaptation of MoCA differs considerably among different available versions as well as the number of items adapted in the various language versions. The potential availability of many culturally adapted and translated versions of the MoCA increases the chance of offering a linguistically and culturally sensitive screening for cognitive impairment to diverse populations; further studies are needed to identify if MoCA can be considered a truly cross-cultural fair test.
... Common risk factors related to inequity in access and utilization of health services include socioeconomic and cultural factors such as education, ethnicity, sex, and demography [1]. A high prevalence of dementia has also been identified in immigrants from both high and low socioeconomic countries [11,12]. Previous studies have shown that the pathway to dementia care differs between majority and minority ethnic groups; where minority ethnic groups seek help at a later stage of dementia and experience more barriers [5,6,13], and where non-European immigrants with cognitive problems consult later than European immigrants [14]. ...
... For non-western immigrants in the Netherlands, the prevalence of mild cognitive impairment and dementia were three to four times higher than the native Dutch population. However, significant differences in education and socioeconomic status between the groups were not controlled for [12]. With a growing number of foreign-born from countries with middle-or low SEP in Sweden, it is important to acknowledge these vulnerable groups to ensure equal treatment and care for all. ...
Background:
With a growing elderly population worldwide, the prevalence of dementia is rapidly increasing. Studies from high income countries have shown that belonging to a minority ethnic group increases the risk of health disadvantages.
Objective:
The aim of the present registry-based study was to identify potential differences in diagnostics, treatment, and care of individuals with dementia focusing on foreign-born in Sweden and the impact of country level socioeconomic position (SEP).
Methods:
The study was based on a large dataset from the Swedish Dementia Registry (SveDem) and the Swedish Tax Agency's population registry. Data on demographic variables, cognitive tests, clinical assessments, medication, diagnosis, and interventions initiated at diagnosis were collected. Country level SEP was determined by country of birth as classified by World Bank Country and Lending groups.
Results:
Of 57,982 patients with dementia registered in SveDem, 7,171 (12.4%) were foreign-born. The foreign-born were significantly younger at diagnosis (p < 0.001), had a lower MMSE score (p < 0.001), lower odds of receiving a specific dementia diagnosis (p < 0.001), lower use of acetylcholinesterase inhibitors (p < 0.001), and overall a higher use of neuroleptics compared with the Swedish-born group. The lower SEP, the greater differences to Swedish-born were seen in many of the examined variables.
Conclusion:
There were significant differences in dementia diagnostics, treatment, and care between foreign-born and Swedish-born, a lower SEP indicating greater differences. Further research should focus on various socioeconomic aspects and health care outcomes for a more profound analysis of equity in dementia care.
... Emerging evidence suggests that the epidemiology of dementia and parkinsonism varies across ethnic and immigrant groups [25][26][27][28][29][30] . A systematic review reported higher dementia incidence rates in the USA for Blacks and Caribbean Hispanic populations than other ethnic groups 25 . ...
... There is also considerable burden of neurodegenerative conditions among immigrants in Italy, Norway, the Netherlands, and the UK 27-30 . Parlevliet et al. reported that dementia was three to four times more prevalent in most non-Western immigrant groups compared to the native Dutch population 30 . Notably, studies are needed to assess the incidence and prevalence of dementia and parkinsonism among ethnic and immigrant groups in Canada. ...
Objective
We assessed long-term incidence and prevalence trends of dementia and parkinsonism across major ethnic and immigrant groups in Ontario.
Methods
Linking administrative databases, we established two cohorts (dementia 2001–2014 and parkinsonism 2001–2015) of all residents aged 20 to 100 years with incident diagnosis of dementia (N = 387,937) or parkinsonism (N = 59,617). We calculated age- and sex-standardized incidence and prevalence of dementia and parkinsonism by immigrant status and ethnic groups (Chinese, South Asian, and the General Population). We assessed incidence and prevalence trends using Poisson regression and Cochran–Armitage trend tests.
Results
Across selected ethnic groups, dementia incidence and prevalence were higher in long-term residents than recent or longer-term immigrants from 2001 to 2014. During this period, age- and sex-standardized incidence of dementia in Chinese, South Asian, and the General Population increased, respectively, among longer-term immigrants (by 41%, 58%, and 42%) and long-term residents (28%, 7%, and 4%), and to a lesser degree among recent immigrants. The small number of cases precluded us from assessing parkinsonism incidence trends. For Chinese, South Asian, and the General Population, respectively, prevalence of dementia and parkinsonism modestly increased over time among recent immigrants but significantly increased among longer-term immigrants (dementia: 134%, 217%, and 117%; parkinsonism: 55%, 54%, and 43%) and long-term residents (dementia: 97%, 132%, and 71%; parkinsonism: 18%, 30%, and 29%). Adjustment for pre-existing conditions did not appear to explain incidence trends, except for stroke and coronary artery disease as potential drivers of dementia incidence.
Conclusion
Recent immigrants across major ethnic groups in Ontario had considerably lower rates of dementia and parkinsonism than long-term residents, but this difference diminished with longer-term immigrants.
... Since the first generation migrants are aging, an increase in dementia prevalence is expected. There is preliminary evidence for higher dementia prevalence in ethnic minorities from the Netherlands (Parlevliet et al., 2016), the UK (Adelman, Blanchard, Rait, Leavey, & Livingston, 2011), Denmark (Rosenbaum, Kristensen, & Schmidt, 2008) and USA (Katz et al., 2012) and for a higher prevalence of dementia in illiterate populations in general (Kosmidis, 2018;Nitrini et al., 2009). In their longitudinal study among older adults in the New York region, Renter ıa and colleagues showed that illiterate participants were twice as likely to develop dementia compared to literate participants (Renter ıa et al. 2019). ...
... Higher prevalence rates of dementia in illiterate populations could be partly explained by false-positive results on cognitive screening tests which are used to establish a dementia diagnosis. Nevertheless, even in studies where cognitive screening test cutoffs were adjusted to the ethnic minority population (Parlevliet et al., 2016) and informant information was incorporated in the diagnosis (Nitrini et al., 2009), dementia prevalence was higher in illiterate people. ...
Objective: Detecting dementia in people who are illiterate or have a low level of education is complicated because many cognitive screening tests are not suitable for these persons. Caregiver or informant-based judgment of cognitive status may aid diagnosis. Our goal was to investigate the diagnostic accuracy of the Informant Questionnaire for Cognitive Decline in the Elderly (IQCODE) in a population of elderly non-Western migrants with a high illiteracy rate. Second, we wanted to investigate the diagnostic accuracy of IQCODE and Rowland Universal Dementia Screening (RUDAS) combined.
Method: 109 geriatric outpatients and 20 community controls were included. Geriatricians provided a research diagnosis of intact cognition (n = 27), mild cognitive impairment (MCI; n = 33) or dementia (n = 49). Diagnostic accuracy was calculated for the clinical sample (n = 109). ROC curves for prediction of group status for IQCODE, RUDAS and the combination of both were created.
Results: Predictive validity was high for both IQCODE and RUDAS and was highest for the combination (Area Under the Curve .91). Sensitivity, specificity, Youden index, predictive value, and likelihood ratio for IQCODE and RUDAS are reported.
Conclusions: In this study in non-Western elderly migrants, half of whom were illiterate, the IQCODE proved to be a valid instrument for dementia detection, and adding the RUDAS increased accuracy. Combining performance-based and informant-based data is recommended to enhance diagnostic precision.
... Such trends suggest that the size of the older adult immigrant population with dementia may increase in coming decades. Previous studies have found that immigrant status and incidence of dementia are closely linked [10][11][12]. However, the results of the prior studies have been inconsistent with respect to whether immigrant status increases or decreases the possibility of cognitive impairment [13]. ...
... However, the results of the prior studies have been inconsistent with respect to whether immigrant status increases or decreases the possibility of cognitive impairment [13]. Some researchers, such as Moon and colleagues, found that immigrants had a higher prevalence of dementia [10,11]. Psychological (e.g., social isolation and depression) and demographic characteristics (e.g., low socioeconomic status) have been identified as playing a role in the link of immigrant status with cognitive decline [10,14,15]. ...
This study investigates whether immigrant status is a risk factor for developing dementia and having undiagnosed dementia, as well as the role of limited English proficiency (LEP) as a mediator in the association. Data were drawn from the 2011 wave of the National Health and Aging Trends Study. The sample consisted of 7385 adults aged 65 years and older (6567 U.S.-born and 818 foreign-born). Step-wise logistic regression analyses were performed. Older immigrants had 70% greater odds of having dementia compared to U.S.-born participants. Among those with dementia (n = 1920), older immigrants showed 119% higher odds of being undiagnosed compared to the U.S.-born. Mediation analyses showed that the total effects of immigrant status on dementia and undiagnosed dementia explained by LEP were 87.6% and 56.1%, respectively. It is important to tailor dementia education and interventions to the immigrant population with LEP.
... The number of people living with dementia is expected to increase in the coming years. People with an immigration background are at an increased risk of developing dementia and are more likely to experience barriers in accessing dementia services and care, which may lead to health inequities and a reduction of quality of life [5][6][7]. Hence, there is a need to develop and coordinate dementia care plans, including the use of technology, for marginalized older adults living with dementia, such as those with an immigration background and low literacy levels [8]. ...
Background: There is a need to develop and coordinate dementia care plans that use assistive technology for vulnerable groups such as immigrant populations. However, immigrant populations are seldom included in various stages of the development and implementation of assistive technology, which does not optimize technology acceptance.
... Research suggests ethnic differences in dementia risk [1]. Some migrant populations are thought to be affected more often than native populations, with prevalence estimations two-to-five times higher in persons with a non-western migration background compared to native populations in Europe [2,3]. In the Netherlands, persons with a migration background are estimated to account for over 7 % of all persons with dementia [4]. ...
... The number of people living with dementia is expected to increase in the coming years. People with an immigration background are at an increased risk of developing dementia and are more likely to experience barriers in accessing dementia services and care, which may lead to health inequities and a reduction of quality of life [5][6][7]. Hence, there is a need to develop and coordinate dementia care plans, including the use of technology, for marginalized older adults living with dementia, such as those with an immigration background and low literacy levels [8]. ...
Background
There is a need to develop and coordinate dementia care plans that use assistive technology for vulnerable groups such as immigrant populations. However, immigrant populations are seldom included in various stages of the development and implementation of assistive technology, which does not optimize technology acceptance.
Objective
This study aims to gain an in-depth understanding of the acceptance of a digital personal assistant, called Anne4Care, by older adult immigrants living with dementia in their own homes.
Methods
This study used a qualitative descriptive research design with naturalistic inquiry. A total of 13 older adults participated in this study. The participants were invited for 2 interviews. After an introduction of Anne4Care, the first interview examined the lives and needs of participants, their expectations, and previous experiences with assistive technology in daily life. Four months later, the second interview sought to understand facilitators and barriers, suggestions for modifications, and the role of health care professionals. Three semistructured interviews were conducted with health care professionals to examine the roles and challenges they experienced in the use and implementation of Anne4Care. Content analysis, using NVivo11, was performed on all transcripts.
Results
All 13 participants had an immigration background. There were 10 male and 3 female participants, with ages ranging from 52 to 83 years. Participants were diagnosed with an early-stage form of dementia or acquired brain injury. None of the older adult participants knew or used digital assistive technology at the beginning. They obtained assistance from health care professionals and family caregivers who explained and set up the technology. Four themes were found to be critical aspects of the acceptance of the digital personal assistant Anne4Care: (1) use of Anne4Care, (2) positive aspects of Anne4Care, (3) challenges with Anne4Care, and (4) expectations. Assistance at first increased the burden on health care professionals and families. After the initial effort, most health care professionals and families experienced that Anne4Care reduced their tasks and stress. Contributions of Anne4Care included companionship, help with daily tasks, and opportunities to communicate in multiple languages. On the other hand, some participants expressed anxiety toward the use of Anne4Care. Furthermore, the platform required an internet connection at home and Anne4Care could not be used outside the home.
Conclusions
Although older adult immigrants living with dementia had no previous experience with digital assistive technology specifically, the acceptance of the digital personal assistant, called Anne4Care, by older adult immigrants living with dementia was rather high. The digital assistant can be further developed to allow for interactive conversations and for use outside of one’s home. Participation of end users during various stages of the development, refinement, and implementation of health technology innovations is of utmost importance to maximize technology acceptance.
... In 2019 -2020, 21% of people living with dementia in RACHs were immigrants from non-English speaking countries [1]. International studies have reported that immigrants experience a higher prevalence of dementia due to differing life experiences including those related to trauma, low literacy, and socioeconomic status [3][4][5]. ...
Background: Neuropsychiatric symptoms of dementia such as agitation and aggression are common in people living with dementia. The presentation of neuropsychiatric symptoms is influenced by the cultural background of people living with dementia. Further, identifying factors contributing to neuropsychiatric symptoms may be complicated if people living with dementia are immigrants or from non-English-speaking backgrounds. Most of what is known about differences in neuropsychiatric symptoms between racial and ethnic groups living with dementia come from community-based samples. This study investigated differences in clinico-demographics and neuropsychiatric symptoms between immigrants and non-immigrants living with dementia in residential aged care homes who were referred to two Dementia Support Australia programs.
Methods: This was a retrospective observational cross-sectional study from 2018 to 2022 using data extracted from the Dementia Support Australia database. Immigrant status was identified by documented country of birth. We conducted exploratory subgroup analyses for English-speaking or non-English-speaking immigrants in comparison to non-immigrants. Neuropsychiatric Inventory and PainChek® were used to assess neuropsychiatric symptoms of dementia and pain, respectively.
Results: Of the 23,889 referrals, 36% were immigrants living with dementia. Immigrants were 0.8 years older than non-immigrants on average. Immigrants had a slightly higher prevalence of mixed dementia (9.5%) than non-immigrants (8.2%). Overall, the groups had no difference in the severity of neuropsychiatric symptoms and associated caregiver distress. However, there was a significant difference in the total number of neuropsychiatric inventory domains (Cohen’s d = -0.06 [-0.09, - 0.02], p <.001) between non-English-speaking immigrants and non-immigrants. Immigrants were more likely to present with agitation/aggression, while non-immigrants were more likely to present with hallucinations. Factors contributing to neuropsychiatric symptoms were common between the groups, with language barriers and cultural considerations frequently endorsed for immigrants.
Conclusion: This study reveals a mixed picture of neuropsychiatric symptoms between immigrants and non-immigrants. However, due to the exploratory nature of the hypotheses, our findings need to be replicated in future studies to confirm any conclusions. There is a need for increased awareness on the impact of culture and language on neuropsychiatric symptoms for people receiving residential care. Future studies investigating neuropsychiatric symptoms in different immigrant groups will help increase our understanding of neuropsychiatric symptoms for all people.
... Ancak yaşlılık algısı kültürden kültüre değişen çok boyutlu bir kavramdır. Olumlu yaşlılık algısı bazı kültürlerde biyomedikal değişkenlere daha fazla bağımlıyken, bazı kültürlerde hastalık, sakatlık gibi durumlara rağmen yaşlı birey olumlu yaşlılık algısına sahip olabilmekte, başarılı bir yaşlanma süreci yaşadığını düşünebilmektedir (23 (25,27,28). Çalışmamızda da katılımcıların %57.8'i en az bir kronik hastalığa sahipti. ...
Başarılı yaşlanmayı doğrudan etkileyen yaşlılık algısı sosyoekonomik, kültürel özelliklere göre farklılık gösterebilir. Bu çalışma ile yaşlı bireylerin “yaşlılık’’ kavramına ilişkin algılarının metaforlar aracılığıyla ortaya konması amaçlanmıştır. Bu araştırma nitel araştırma desenlerinden biri olan fenomenolojik desendedir. Araştırmaya 65 yaş ve üzeri206 birey dahil edilmiştir. Araştırmanın verileri sosyo-demografik bilgiler ve katılımcıların “Yaşlılık....................gibidir/benzer. Çünkü....................’’cümlesini tamamlamaları ile elde edilmiştir. Katılımcıların ürettikleri metaforlardan kategoriler oluşturulmuş ve destekleyici örneklerle sunulmuştur. Yaş ortalaması 70.11±6.28 olan katılımcılar yaşlılık algısına ilişkin 99 metafor oluşturmuşlardır. Bu metaforlar vasıtasıyla yaşlılık algısı için “geriye dönüşü olmayan zorlu süreç” (%45.6), “birikimin aktarıldığı süreç” (%23.3), “yeni deneyimler için fırsat süreci” (%12.6), “pozitif ve negatif yönleri ile değişim süreci” (%10.2), “tükenme ve yalnızlık süreci” (%8.3) olmak üzere beş kategori elde edilmiştir. Elde edilen kategoriler doğrultusunda; 65 yaş ve üstü bireylerin yarısının (%53.9) yaşlılığa olumsuz anlam yükledikleri saptanmıştır. Bu sonuç, yaşlılığa ilişkin algıları iyileştirmek için çalışmalar planlanmasının gerekliliğini göstermektedir.
... Many of these existing inequalities are evident in the case of dementia and dementia research. Hence, for example, in the United States, African-Americans are at greater risk of dementia than whites and Asian-Americans (Mayeda et al., 2016), as are those living in areas of the United Kingdom with higher levels of deprivation (Matthews et al., 2016), and immigrants to the Netherlands with non-Western ethnic backgrounds (Parlevliet et al., 2016). All have substantially higher risks of developing dementia, but may be under-captured in both clinical and research data, due to systemic inequities in healthcare. ...
Dementia poses a growing challenge for health services but remains stigmatized and under‐recognized. Digital technologies to aid the earlier detection of dementia are approaching market. These include traditional cognitive screening tools presented on mobile devices, smartphone native applications, passive data collection from wearable, in‐home and in‐car sensors, as well as machine learning techniques applied to clinic and imaging data. It has been suggested that earlier detection and diagnosis may help patients plan for their future, achieve a better quality of life, and access clinical trials and possible future disease modifying treatments. In this review, we explore whether digital tools for the early detection of dementia can or should be deployed, by assessing them against the principles of ethical screening programs. We conclude that while the importance of dementia as a health problem is unquestionable, significant challenges remain. There is no available treatment which improves the prognosis of diagnosed disease. Progression from early‐stage disease to dementia is neither given nor currently predictable. Available technologies are generally not both minimally invasive and highly accurate. Digital deployment risks exacerbating health inequalities due to biased training data and inequity in digital access. Finally, the acceptability of early dementia detection is not established, and resources would be needed to ensure follow‐up and support for those flagged by any new system. We conclude that early dementia detection deployed at scale via digital technologies does not meet standards for a screening program and we offer recommendations for moving toward an ethical mode of implementation.
This article is categorized under: Application Areas > Health Care
Commercial, Legal, and Ethical Issues > Ethical Considerations
Technologies > Artificial Intelligence
... The test was also well-tolerated as part of the TULIPA battery (Franzen et al., 2022a,b). Furthermore, CCD has been regarded as a promising cognitive test for the study of the prevalence of mild cognitive impairment and dementia in Non-Western immigrants, according to a study in a multi-cultural sample of 2,254 participants conducted in the Netherlands (Parlevliet et al., 2016). ...
Objective
The Cross-Cultural Dementia (CCD) is a new screening tool to evaluate cognitive impairment based on a cross-cultural perspective to reduce the bias of education, and language and cultural differences. We aimed to evaluate the diagnostic properties of the CCD in Spaniards for the assessment of patients with Alzheimer’s disease in mild cognitive impairment (AD-MCI) and mild dementia stages (AD-D) and patients with mild cognitive impairment associated with Parkinson’s disease (PD-MCI).
Methods
Sixty participants with AD (50% MCI) and thirty with PD-MCI were enrolled. Each clinical group was compared against a healthy control group (HC) with the same number of participants and no significant differences in age, education, and sex. A comprehensive neuropsychological test battery and CCD were completed. Intergroup comparisons, ROC curves, and cut-off scores were calculated for the study of diagnostic properties.
Results
Intergroup differences were found in accordance with the cognitive profile of each clinical condition. Memory measures (Objects test) were especially relevant for the classification between AD and HC. Memory and executive function scores (Sun-Moon and Dots tests) were useful in the case of PD-MCI and HC. Furthermore, CCD described differences in executive functions and speed scores comparing AD-MCI and PD-MCI. Correlations between standardized neuropsychological tests and CCD measures supported the convergent validity of the test.
Conclusion
CCD showed good discrimination properties and cut-off scores for dementia and extended its application to a sample of prodromal stages of AD and PD with mild cognitive impairment.
... Differences in knowledge of dementia risk prevention in relation to education and age are also seen in other studies [11], indicating that campaigns need to be customized related to age and education/socioeconomic status. Epidemiological research indicates that the risk for dementia shows inequality, as people with low socioeconomic status, immigrants and people with non-Western ethnic backgrounds have a higher risk of dementia [21], which might be partially explained by their having a poorer lifestyle [22]. ...
Background
Several modifiable lifestyle risk factors for dementia have been identified, but it is unclear how much the Norwegian public knows about the relationship between lifestyle and brain health. Therefore, this study aimed to investigate knowledge about modifiable dementia risk and protective factors and beliefs and attitudes towards dementia and dementia risk reduction in a randomly selected subsample of the Norwegian population.
Methods
The total sample (n = 1435) included individuals aged 40–70 years from four counties (Oslo, Innlandet, Nordland and Trøndelag) in Norway. Two online questionnaires were used to measure (1) awareness about dementia risk reduction and (2) an individual`s motivation to change behaviour for dementia risk reduction (MOCHAD-10).
Results
Of the participants, 70% were aware of the potential of dementia risk reduction in general. Physical inactivity (86%), cognitive inactivity (84%) and social isolation (80%) were the most frequently recognised dementia risk factors. On the other hand, diabetes (26%), coronary heart disease (19%), hearing loss (18%) and chronic kidney disease (7%) were less often recognised as dementia risk factors. Comparing men and women, the only significant difference was that women were more likely to report parents with dementia as a risk factor compared to men. Gender, age and educational differences were seen in beliefs and attitudes towards dementia prevention:women reported more negative feelings and attitudes towards dementia than men;those aged 40–49 years – more likely than older age groups – reported that ‘knowing family members with dementia’ or ‘having risk factors’ made them believe they had to change their lifestyle and behaviour.
Conclusions
The results indicate that 70% of the Norwegian public are aware of the potential for dementia risk reduction in general. However, there are major gaps in existing knowledge, particularly for cardiovascular risk factors such as hypertension, coronary heart disease, hypercholesterolemia and metabolic factors (diabetes, obesity). These findings underline the importance of further informing the Norwegian public about lifestyle-related risk and protective factors of dementia. Differences in beliefs and attitudes towards dementia risk prevention by age, gender and education require tailored public risk reduction interventions.
... 3 Incidence, prevalence and clinical presentation of cognitive disorders may differ between ethnic or cultural groups depending on their geographical origin, genetic background, gender and age. 4 At the same time, the presence of cultural, language and educational barriers may significantly affect diagnosis, treatment and care of cognitive disorders. [5][6][7] Several minority ethnic groups in European countries are at an increased risk of medical conditions that increase risk of cognitive disorders, such as stroke, diabetes mellitus, and hypertension. ...
Due to increasing cultural, linguistic, and educational diversity in older populations across Europe, accurate assessment of cognitive functioning in people from diverse backgrounds becomes increasingly important. This paper aims to provide a state-of-the-art review of cognitive assessment in culturally, linguistically, and educationally diverse older populations in Europe, focusing on challenges and recent advances in cross-cultural assessment. Significant work has been carried out on the identification of challenges in cognitive assessment in culturally, linguistically, and educationally diverse older populations and on development and validation of cross-cultural cognitive tests. Most research has addressed the influences of language barriers, education and literacy, and culture and acculturation and in particular, the European Cross-Cultural Neuropsychological Test Battery (CNTB) and the Rowland Universal Dementia Assessment Scale (RUDAS) are well-validated across European countries. However, cross-cultural cognitive assessment is largely still a developing field in Europe, and there is a continuing need for developments within the field.
... Dit houdt verband met de vergrijzing van en de relatief grote kans op dementie bij verschillende groepen migranten. Zo bezitten zij bijvoorbeeld vaker risicofactoren voor dementie, zoals een hoge bloeddruk, diabetes en overgewicht (Parlevliet et al., 2016). Hoewel mensen met een migratieachtergrond en hun familieleden nog weinig gebruik maken van casemanagement en wijkverpleging, neemt dit gebruik inmiddels sterk toe en zal naar verwachting in de toekomst verder groeien (Sagbakken et al., 2018 ...
Het bespreken van onbegrepen gedrag bij mensen met dementie en een migratieachtergrond 'Op weg' naar een methodiek voor verpleegkundigen Door: Kernwoorden: Dementiezorg, Migratieachtergrond, Onbegrepen gedrag, Thuissituatie, Verpleegkundigen Verpleegkundigen vinden het lastig om goede dementiezorg te bieden aan mensen met een migratieachtergrond en hun mantelzorgers als er sprake is van onbegrepen gedrag. Bestaande methodieken voor het omgaan met onbegrepen gedrag sluiten niet aan op de situatie van deze doelgroep. In het "Op weg" project onderzochten wij waar de knelpunten liggen voor zorgverleners en mantelzorgers bij het bespreken van onbegrepen gedrag. Deze interviews zijn de eerste stap in de ontwikkeling van een methodiek voor het omgaan met onbegrepen gedrag bij thuiswonende mensen met dementie en een migratieachtergrond. Casus Laura Molenaar ondersteunt als casemanager het echtpaar Yilmaz. Meneer Yilmaz kreeg een half jaar geleden de diagnose dementie. Eerder was hij het gezinshoofd en gerespecteerd lid van de Turkse gemeenschap. Nu kan hij niet goed meer voor zichzelf zorgen. Bij het aankleden en eten verzet hij zich heftig tegen hulp en slaat om zich heen. Zijn vrouw is bang voor hem geworden, maar durft dit niet te benoemen. Laura krijgt weinig zicht op de context van het onbegrepen gedrag. De communicatie met mevrouw is lastig omdat zij nauwelijks Nederlands spreekt. De communicatie met de zoon en dochters gaat beter, maar niet alle kinderen zien de ernst van de situatie. Daarbij willen ze niet tornen aan de positie van meneer Yilmaz als gezinshoofd. Verschillende visies op onbegrepen gedrag en miscommunicatie belemmeren zo een systematische aanpak van het onbegrepen gedrag volgens de professionele richtlijn. Laura ziet niet hoe ze in deze context goede zorg kan bieden. Onbegrepen gedrag Verpleegkundigen krijgen steeds vaker te maken met mensen met dementie en een migratieachtergrond, maar voelen zich onvoldoende toegerust om deze doelgroep te begeleiden, zeker wanneer er sprake is van onbegrepen gedrag. Voor onbegrepen gedrag worden verschillende termen gebruikt, zoals probleemgedrag, moeilijk hanteerbaar gedrag of veranderd gedrag. Kenmerkend is dat het gedrag gepaard gaat met lijden bij de persoon met dementie of diens omgeving (zowel naasten als zorgverleners). Onbegrepen gedrag heeft een negatieve invloed op de ervaren kwaliteit van leven en de mantelzorgbelasting (Prins, 2019). Voorbeelden van onbegrepen gedrag zijn (nachtelijke) onrust, (seksuele) ontremming, argwaan, apathie en agressie. De oorsprong ervan is vaak multifactorieel, variabel en persoons-en contextgebonden. Denk bijvoorbeeld aan lichamelijke oorzaken zoals pijn of een blaasontsteking, psychologische oorzaken zoals een trauma in het verleden of onvervulde behoeften, oorzaken in de sociale omgeving zoals te veel verwachten van de persoon met dementie, en oorzaken in de fysieke omgeving zoals over-of onderprikkeling (Verenso, 2018). Dit maakt de aanpak van onbegrepen gedrag vaak complex, en blijkt in het geval van migranten met dementie dikwijls nog ingewikkelder. Migranten met dementie Het aantal migranten met dementie groeit twee zo hard als dat van de autochtone bevolking. Dit houdt verband met de vergrijzing van en de relatief grote kans op dementie bij verschillende groepen migranten. Zo bezitten zij bijvoorbeeld vaker risicofactoren voor dementie, zoals een hoge bloeddruk, diabetes en overgewicht (Parlevliet et al., 2016). Hoewel mensen met
... Additionally, there was a difference in populations marked as 'minorities': for example, Yaffe et al. [44] reported the percentages of white and black people, while Samuel et al. [57] also reported Hispanic ethnicity and 'other'. Nonetheless, previous studies describe the modifying effect of race on the association between some indicators of social class and cognitive health outcomes [70,[76][77][78][79]. For example, Yaffe et al. [44] and Mantri et al. [70] reported no effect of race on the incidence of dementia [44] and global cognition [70] if adjusted for social deprivation (financial strain and racial segregation of the neighbourhood). ...
Background
The association between belonging to a disadvantaged socio-economic status or social class and health outcomes has been consistently documented during recent decades. However, a meta-analysis quantifying the association between belonging to a lower social class and the risk of dementia has yet to be performed. In the present work, we sought to summarise the results of prospective, longitudinal studies on this topic.
Methods
We conducted a systematic review and meta-analysis of prospective, longitudinal studies measuring the association between indicators of social class and the risk of all-cause/Alzheimer’s dementia. The search was conducted in four databases (Medline, Embase, Web of Science and PsychInfo). Inclusion criteria for this systematic review and meta-analysis were: (a) longitudinal prospective study, (b) aged ⩾60 years at baseline, (c) issued from the general population, (d) no dementia at baseline and (e) mention of social class as exposure. Exclusion criteria were: (a) study of rare dementia types (e.g. frontotemporal dementia), (b) abstract-only papers and (c) articles without full text available. The Newcastle–Ottawa scale was used to assess the risk of bias in individual studies. We calculated the overall pooled relative risk of dementia for different social class indicators, both crude and adjusted for sex, age and the year of the cohort start.
Results
Out of 4548 screened abstracts, 15 were included in the final analysis (76,561 participants, mean follow-up 6.7 years (2.4–25 years), mean age at baseline 75.1 years (70.6–82.1 years), mean percentage of women 58%). Social class was operationalised as levels of education, occupational class, income level, neighbourhood disadvantage and wealth. Education (relative risk (RR)=2.48; confidence interval (CI) 1.71–3.59) and occupational class (RR=2.09; CI 1.18–3.69) but not income (RR=1.28; CI 0.81–2.04) were significantly associated with the risk of dementia in the adjusted model. Some of the limitations of this study are the inclusion of studies predominantly conducted in high-income countries and the exclusion of social mobility in our analysis.
Conclusions
We conclude that there is a significant association between belonging to a social class and the risk of dementia, with education and occupation being the most relevant indicators of social class regarding this risk. Studying the relationship between belonging to a disadvantaged social class and dementia risk might be a fruitful path to diminishing the incidence of dementia over time. However, a narrow operationalisation of social class that only includes education, occupation and income may reduce the potential for such studies to inform social policies.
... 11 Several studies have reported a higher prevalence of dementia in immigrants. [12][13][14] Arora et al 15 have reported that the older immigrants' healthcare experiences are affected by aspects of their health literacy, language barriers and differences in health beliefs. Immigrants are a culturally and socioeconomically diverse group, where their experiences of health service use, including dementia care, can vary considerably from the rest of the population. ...
Objective
To systematically review and synthesise evidence on the experiences of older immigrants living with dementia and their carers.
Design
A systematic review and meta-synthesis of qualitative studies.
Methods
Studies exploring the experiences of older immigrants living with dementia and their carers were eligible. Databases were searched including CINAHL, MEDLINE, PsycINFO, PubMed, Embase, Web of Science and Cochrane Library from January 2000 to April 2021. Quality assessment was undertaken using the Critical Appraisal Skills Programme checklist for qualitative studies. Data were then synthesised using the thematic synthesis approach.
Results
The results of this meta-synthesis were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement and Enhancing transparency in reporting the synthesis of qualitative research statement. A total of 3857 studies were returned from the database search. Eighteen studies were included for meta-synthesis. Five synthesised findings were identified: living with dementia and caregiving; family relationships; barriers to dementia care services; stigma and discrimination; and legal and financial issues. The experiences of living with dementia and caregiving presented multiple challenges for older immigrants living with dementia and their families. However, there seems to be very little difference between the experiences of those who have migrated to a new country and those who were born and aged in the same country, but the ability to access and use the available services is different.
Conclusion
A lack of culturally appropriate dementia services, language barriers and dementia stigma can impede access to dementia care for older immigrants. Strategies to mitigate these barriers are urgently needed to ensure people from culturally and linguistically diverse backgrounds with dementia and their families have the information, education and support to access dementia services, in addition to research that explores the experiences of culturally and linguistically diverse populations.
PROSPERO registration number
CRD42021277913.
... Given the aging population, this figure is expected to double every 20 years, increasing to 78 million by 2030. 1 Some groups are more at risk for developing dementia, including people with a non-western immigrant background. 2 This might in part be related to a relatively high prevalence of diseases such as diabetes and cardiovascular conditions among these groups, that increase the risk of dementia. 3,4 In the Netherlands, 12.6% of the population has a nonwestern migrant background, of which people with a Turkish or Moroccan background are the largest 2 groups. ...
Objective
To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background.
Methods
The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach’s α. The known group validity was determined by comparing mean scores between subgroups.
Results
Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not.
Conclusions
The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background.
Practice Implications
The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups.
... Senioren en ouderen met een niet-westerse achtergrond hebben doorgaans een slechtere gezondheid en meer fysieke beperkingen dan 55-plussers zonder migratieachtergrond [1][2][3][4][5]. Ze zijn daardoor eerder 'oud' of kwetsbaar. ...
Samenvatting
De groep senioren met een niet-westerse migratieachtergrond zal de komende jaren zowel in absoluut aantal als in relatief aandeel toenemen. Onderzocht is of zelfstandig wonende 55-plussers met een niet-westerse achtergrond (Turks, Marokkaans, Surinaams of Antilliaans) in hun gebruik van langdurige zorg (thuiszorg en informele hulp) verschillen van 55-plussers met een Nederlandse herkomst. De gegevens die zijn verzameld betreffen de periode van februari 2014 tot half juli 2015, dus rondom de stelselwijziging van 1 januari 2015. Wanneer rekening wordt gehouden met samenstellingseffecten, dan ontvangen senioren met een migratieachtergrond even vaak zorg als autochtone Nederlandse. Herkomst blijkt echter wel samen te hangen met de bron van de hulp wanneer senioren hulp ontvangen. Zowel Turkse, Marokkaanse als Antilliaanse 55-plussers ontvangen vaker (enkel) informele hulp dan autochtone 55-plussers. Het lijkt erop dat zij de weg naar professionele thuiszorg niet in gelijke mate weten te vinden als 55-plussers met een Nederlandse achtergrond. Zorgaanbieders en gemeenten moeten actief stappen ondernemen om de toegankelijkheid van de zorg voor deze groepen te verbeteren. Daarbij is het belangrijk om te weten dat senioren met een migratieachtergrond vaak al op jongere leeftijd met fysieke beperkingen en een slechtere gezondheid te maken krijgen en daardoor mogelijk eerder in aanmerking moeten komen voor professionele ouderenzorg.
... This raises concerns for dementia care and support services, as dementia prevalence increases with age (World Health Organization, 2012). In the Netherlands, the magnitude of this concern is illustrated by Parlevliet, Uysal-Bozkir, Goudsmit, et al. (2016), who found that dementia and mild cognitive impairment have a higher prevalence in the three largest minority groups with a migration background (Turkish, Moroccan, and Surinamese) compared with the majority population. ...
Background and objectives: Previous studies show that persons with a migration background (PwM) caring for a family member with dementia often experience access barriers to formal care services, and that family carers often perform the lion's share of care. Yet research offering a detailed account on their experiences of dementia care-sharing is sparse. In this paper, we respond to this knowledge gap by exploring how different social categories impact on practices of care-sharing in our participants and their families. Research design and methods: A qualitative study of six PwM who provide care for a family member with dementia was conducted through two methods: semi-structured, life-story interviews followed by "shadowing" our participants in their daily lives. We were guided by intersectionality as an analytical lens in exploring the multi-faceted experiences of care-sharing.
Findings: Throughout our analysis, intersections of migration history and social class stood out the most. We elucidate how they influence the attainment of necessary skills to organize and share care-tasks as well as perceptions of "good care." Additionally, our findings illustrate how one's position within the family, the presence or absence of supportive social networks, religion, gendered care norms, and relationship to the care-recipient are relevant to experiences of care-sharing.
Implications: Rather than overemphasizing ethnicity and culture, practice and policy should take into account that intersections of various social categories affect care-sharing and the type of support that is (or is not) organized.
... Some studies show even a higher increase for the number of persons with dementia from EM groups compared to the general population (Alzheimer Nederland, 2014; APPGD [All-Party Parliamentary Group on Dementia], 2013; Nielsen et al., 2015). One of the main reasons for this difference is the vulnerability of EM groups to dementia due to accumulating risk factors, for example, diabetes ,cardiovascular diseases, and low literacy, which have been indicated as causes for the higher dementia prevalence within the EM population (Bindraban et al., 2008;Parlevliet et al., 2016;Rosenbaum et al., 2008;Uitewaal et al., 2004). ...
The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals’ attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group.
... In the United States, dementia incidence is higher in some ethnic minority groups (Mayeda et al., 2016;Mehta & Yeo, 2017). A European meta-analysis yielded an age-and sex-adjusted odds ratio of 1.73 for dementia, and a Dutch study also found a higher dementia prevalence in minority groups compared to the native population (Selten et al., 2020;Parlevliet et al., 2016). In the Netherlands, circa 16% of the older population (>55 years) has a migration background (defined as at least one parent born abroad), of whom 6% has a non-western migration background. ...
Objectives
Despite the suspected higher prevalence of dementia in first generation ethnic minority populations, little is known about their pathway to geriatric diagnostic facilities. This study describes presenting symptoms, demographic and clinical characteristics of a large cohort of patients from ethnic minority populations at their first visit to a geriatric day clinic and compares them with those of native majority (Dutch) patients.
Method
Retrospective case control study in an urban geriatric day clinic setting. Participants were 415 minority patients (cases) from 47 different countries and 428 native Dutch control patients. Measurements were demographic characteristics, cognitive screening results, informant questionnaires, neuropsychiatric and depressive symptoms and somatic comorbidity.
Results
Ethnic minority patients presented with a different profile of psychiatric and somatic comorbidity. They were younger, had longer duration of symptoms and possibly presented somewhat later in the course of the dementia than the controls. Minority patients had more neuropsychiatric and depressive symptoms than native Dutch patients. They also had more often somatic comorbidities than controls, especially diabetes mellitus.
Conclusions
Clinicians in geriatric diagnostic facilities should be aware of the younger age at presentation and the high prevalence of some specific risk factors for dementia in ethnic minority patients.
... Smith et al, 60 Radford et al, 97 and Li et al 87 investigated Australian Indigenous people, in whom prevalence was higher compared with the non-Indigenous population. Raina et al, 58,69 Parlevliet et al, 103 and Nielsen et al 74 investigated ethnic minority groups in different countries and found higher prevalence compared with the general population. Liu et al, 31 Bartoloni et al, 83 and Phanthumchinda et al 26 reported a higher prevalence in people with a low socioeconomic status or poor housing conditions. ...
Importance: Reliable prevalence estimates are lacking for young-onset dementia (YOD), in which symptoms of dementia start before the age of 65 years. Such estimates are needed for policy makers to organize appropriate health care.
Objective: To determine the global prevalence of YOD.
Data sources: The PubMed, Embase, CINAHL, and PsycInfo databases were systematically searched for population-based studies on the prevalence of YOD published between January 1, 1990, and March 31, 2020.
Study selection: Studies containing data on the prevalence of dementia in individuals younger than 65 years were screened by 2 researchers for inclusion in a systematic review and meta-analysis.
Data extraction and synthesis: Prevalence estimates on 5-year age bands, from 30 to 34 years to 60 to 64 years, were extracted. Random-effects meta-analyses were conducted to pool prevalence estimates. Results were age standardized for the World Standard Population. Heterogeneity was assessed by subgroup analyses for sex, dementia subtype, study design, and economic status based on the World Bank classification and by meta-regression.
Main outcomes and measures: Prevalence estimates of YOD for 5-year age bands.
Results: A total of 95 unique studies were included in this systematic review, of which 74 with 2 760 379 unique patients were also included in 5-year age band meta-analyses. Studies were mostly conducted in Europe and in older groups in Asia, North America, and Oceania. Age-standardized prevalence estimates increased from 1.1 per 100 000 population in the group aged 30 to 34 years to 77.4 per 100 000 population in the group aged 60 to 64 years. This gives an overall global age-standardized prevalence of 119.0 per 100 000 population in the age range of 30 to 64 years, corresponding to 3.9 million people aged 30 to 64 years living with YOD in the world. Subgroup analyses showed prevalence between men and women to be similar (crude estimates for men, 216.5 per 100 000 population; for women, 293.1 per 100 000 population), whereas prevalence was lower in high-income countries (crude estimate, 663.9 per 100 000 population) compared with upper-middle-income (crude estimate, 1873.6 per 100 000 population) and lower-middle-income (crude estimate, 764.2 per 100 000 population) countries. Meta-regression showed that age range (P < .001), sample size (P < .001), and study methodology (P = .02) significantly influenced heterogeneity between studies.
Conclusions and relevance: This systematic review and meta-analysis found an age-standardized prevalence of YOD of 119.0 per 100 000 population, although estimates of the prevalence in low-income countries and younger age ranges remain scarce. These results should help policy makers organize sufficient health care for this subgroup of individuals with dementia.
... In Europe, type 2 diabetes mellitus is two to four times more prevalent in ethnic minority populations compared to native inhabitants [4]. Also asthma, dementia, coronary heart diseases, anxiety disorders and stroke are more prevalent in ethnic minorities compared to ethnically Dutch populations [5,6]. Also, both quality and outcomes of healthcare are worse. ...
Objective
Observational instruments are preferred for assessment of cultural competence. The aim of the current study is to identify observational instruments to assess cultural competence in healthcare providers and dieticians specifically and assess their psychometric properties.
Methods
A systematic review was conducted in Cinahl, Cochrane, EMBASE, PsycInfo, Pubmed, and Web of Science using search terms related to cultural competency and measurement properties. Methodological quality of the selected studies of observational cultural competence instruments in dieticians, other healthcare professionals and psychological counsellors and the measurement properties of instruments were assessed using the COSMIN checklist.
Results
From 11,913 articles, six articles on five instruments were selected. Instruments were targeted at health professionals and counsellors only, and designed for face-to-face communication (n = 4) or verbal responses to videotaped simulated interactions (n = 1). The instruments’ content varied largely, with main focus on attitude, and little on knowledge and skills. The measurement properties were suboptimal.
Conclusion
No observational instrument are available to evaluate cultural competence of dieticians. Studies on psychometric properties of instruments targeted at other health professionals lack methodological rigour.
Practice implications
Future work should focus on developing an instrument that encompasses both ‘general’ cultural competences necessary for all healthcare professionals and dietetic specific competences.
... Over the next decades, a dramatic increase is expected in the number of people living with dementia in developing regions compared to those living in developed regions (Ferri et al., 2005;Prince et al., 2013), due to improvements in life expectancy and rapid population aging, especially in lower-and middle-income countries (World Health Organization, 2011). In addition, non-Western immigrant populations in Western countries, such as people from Turkey and Morocco who immigrated to Western Europe (Nielsen, Vogel, Phung, Gade, & Waldemar, 2011;Parlevliet et al., 2016), or Hispanic people who immigrated to the USA ( Gurland et al., 1997), are reaching an age at which dementia is increasingly prevalent. ...
Objective
Neuropsychological tests are important instruments to determine a cognitive profile, giving insight into the etiology of dementia; however, these tests cannot readily be used in culturally diverse, low-educated populations, due to their dependence upon (Western) culture, education, and literacy. In this review we aim to give an overview of studies investigating domain-specific cognitive tests used to assess dementia in non-Western, low-educated populations. The second aim was to examine the quality of these studies and of the adaptations for culturally, linguistically, and educationally diverse populations.
Method
A systematic review was performed using six databases, without restrictions on the year or language of publication.
Results
Forty-four studies were included, stemming mainly from Brazil, Hong Kong, Korea, and considering Hispanics/Latinos residing in the USA. Most studies focused on Alzheimer’s disease ( n = 17) or unspecified dementia ( n = 16). Memory ( n = 18) was studied most often, using 14 different tests. The traditional Western tests in the domains of attention ( n = 8) and construction ( n = 15), were unsuitable for low-educated patients. There was little variety in instruments measuring executive functioning (two tests, n = 13), and language ( n = 12, of which 10 were naming tests). Many studies did not report a thorough adaptation procedure ( n = 39) or blinding procedures ( n = 29).
Conclusions
Various formats of memory tests seem suitable for low-educated, non-Western populations. Promising tasks in other cognitive domains are the Stick Design Test, Five Digit Test, and verbal fluency test. Further research is needed regarding cross-cultural instruments measuring executive functioning and language in low-educated people.
Introduction
Early diagnosis of dementia is partly based on the evaluation of the basic (b-), instrumental (i-) and advanced (a-) activities of daily living (ADL). Adapting the item content of assessment tools to maintain relevance, understanding, and equivalence of the items and scales across other groups is pertinent. However, there are limited assessment tools developed on or adapted for use on the growing older Sub-Saharan African (SSA) migrant population in Europe. Focusing on the item content, we evaluated the relevance of the advanced activities of daily living (a-ADL) tool to the older SSA migrant population in Belgium.
Method
Two focus group discussions were organized with participants from the SSA community in Gent, Belgium. Relevant, irrelevant, unclear, and new items were identified. The data was analyzed through the inductive method while consensus agreements were used to arrive at refined themes.
Results
Out of the 49 items on the tool, both groups unanimously agreed that 15 items were relevant and 23 irrelevant. Thirteen new items were identified, whereas 15 items were considered unclear.
Conclusion
Participants agreed the tool was relevant but should be adapted. Verification and validation of these results in a larger SSA older migrant population in Belgium is strongly recommended.
Background
The purpose of this study was to investigate the longitudinal impact of different levels of leisure‐time physical activity (LTPA) participation on positive and negative affect among older foreign‐born adults with mild cognitive impairment (MCI).
Methods
This study used 2012 to 2020 data from the Health and Retirement Study data ( n = 1206) that was analyzed using repeated measured multivariate analysis of covariance.
Results
The high‐level participation LTPA group reported higher positive affect and lower negative affect than the mid and low‐level participation groups. The mid‐level LTPA group also reported higher positive and lower negative affect than the low‐level LTPA group.
Conclusions
This study provides evidence that high levels of LTPA participation contribute to an increase in positive affect and a reduction of negative affect among older foreign‐born adults with MCI. The findings of this study will help fill the gap in research on the longitudinal relationship between levels of LTPA participation and positive and negative affect among older foreign‐born adults.
Equal access to healthcare for minority groups is one of the major
challenges in modern healthcare systems. With regard to various
groups that constitute our societies, consideration of their different
needs, situations, values, and goals can lead to improvement of their
health and contribute to a community, in which individuals can
flourish. On the other hand, discrimination in healthcare can lead
to further segregation, stigmatization, and exclusion. Race, ethnicity,
culture, or sexual orientation in their pluralism are only a few of
characteristics of modern societies and have a tremendous impact
on participation in medicine and healthcare. They play a role in
formulation of healthcare needs, in patient-physician relationship
and communication, and in perception of health and illness. The
characteristics that constitute diversity can be visible, e.g., race, age or
gender, or hidden, e.g., religion, convictions, and sexual orientation,
but in many situations they influence the way, in which healthcare
is provided. Inadequate legal entitlements, stigmatization, racism, or
prejudicial and discriminatory behavior can negatively affect the trust
and confidence in healthcare system and lead to negative health out
comes.
Therefore, reduction of health inequalities for minority and vul
nerable groups requires careful consideration. With the changing composition of societies, there is growing consideration of questions of social diversity and equal access to healthcare for minority groups. Despite raised attention to this topic in recent years, there are still debates regarding implementation of healthcare equality in practice. Therefore, the aim of the contributions presented in this volume is a better understanding of the phenomenon of inequity and discrimination of minority groups in accessing healthcare from interdisciplinary perspectives of medical ethics, public health, and law. Such an understanding can lead to the determination of minorities’ special needs concerning healthcare and barriers precluding them from benefitting from existing opportunities.
Background:
A crucial step for planning effective public health policies for migrants with dementia is the collection of data on the local dimensions of the phenomenon and patients' characteristics.
Objective:
This study aimed to identify and characterize migrants with dementia in the Lazio region using health administrative databases.
Methods:
Residents with dementia aged 50 years or older, living in the Lazio region as of December 31, 2018, were identified using a validated algorithm based on hospital discharge(s), claims for antidementia drugs, and co-payment exemption for dementia. Migrants were defined as people born abroad and grouped in migrants from High Migratory Pressure Countries (HMPCs) and Highly Developed Countries (HDCs). Overall and age-specific prevalence rates were estimated in native- and foreign-born patients.
Results:
Dementia was ascertained in 38,460 residents. Among them, 37,280 (96.9%) were born in Italy, 337 (0.9%) were migrants from HDCs, and 843 (2.2%) from HMPCs. Dementia prevalence was higher among natives (1.15%, 95% CI 1.14-1.16) relative to migrants from HDCs (0.60%, 95% CI 0.54-0.67) and HMPCs (0.29%, 95% CI 0.27-0.31). The prevalence of comorbidities did not differ between groups. Migrants with dementia had a lower likelihood of receiving antidementia treatments compared with natives (51.6% in migrants from HDCs, 49.3% in migrants from HMPCs, and 53.5% among Italians).
Conclusion:
Routinely collected data in healthcare administrative databases can support the identification of migrants with dementia. Migrants exhibited a lower age-standardized prevalence of registered dementia and lower access to dedicated treatments than Italians. These findings are suggestive of underdiagnosis and undertreatment of dementia in migrants.
Dementie bij ouderen met een arbeidsmigratieachtergrond Een genuanceerd en complex beeld Door: Saloua Berdai Chaouni Kernwoorden: Dementie, Inclusieve dementiezorg, Migratieachtergrond België kent een groeiende etnische diversiteit onder de oudere bevolking. De arbeidsmigranten uit de jaren '60 vormen een eerste belangrijke golf van ouderen met een migratieachtergrond. Hoewel exacte cijfers over de prevalentie van dementie onder etnische minderheden in België ontbreken, is er een hypothese dat er meer dementie voorkomt bij deze subpopulatie (Parlevliet e.a.., 2016). Oudere migranten met dementie lijken op basis van internationale literatuur een specifiek dementiezorgtraject te volgen met diagnostische uitdagingen, voorkeur voor mantelzorg en ondergebruik van professionele zorg. Uitgangspunten proefschrift Kennis over dementie en oudere migranten in België is zeldzaam en de situatie van oudere migranten met dementie wordt vaak vanuit 'cultuur', als een dominant eenzijdig perspectief, bekeken. Bovendien blijkt gerontologisch onderzoek over dit onderwerp gevoelig voor reproductie van enge aannames over deze ouderen en bij te dragen aan maatschappelijke ongelijkheid van deze groep binnen en doorheen het onderzoek zelf (Torres, 2019). Daarnaast is er beperkte kennis beschikbaar over het uitvoeren van ethisch onderzoek naar dementie bij oudere migranten. Het proefschrift (Berdai Chaouni, 2021) onderzocht daarom deze lacunes en verkent: 1) een meerlagig beeld van de dementie-ervaring en dementiezorg bij arbeidsmigrantengezinnen, en 2) methodologische vormen die tot ethisch onderzoek over dit thema bijdragen. Dit artikel zal ingaan op een aantal belangrijke resultaten over de eerste lacune.
Mild cognitive impairment (MCI) is a syndrome characterized by a decline in cognitive performance greater than expected for an individual's age and education level, but that does not interfere much with daily life activities. Establishing the prevalence of MCI is very important for both clinical and research fields. In fact, in a certain percentage of cases, MCI represents a prodromal condition for the development of dementia. Accordingly, it is important to identify the characteristics of MCI that allow us to predict the development of dementia. Also, initial detection of cognitive decline can allow the early implementation of prevention programs aimed at counteracting or slowing it down. To this end, it is important to have a clear picture of the prevalence of MCI and, consequently, of the diagnostic criteria used. According to these issues, this systematic review aims to analyze MCI prevalence, exploring the methods for diagnosing MCI that determine its prevalence. The review process was conducted according to the PRISMA statement. Three thousand one hundred twenty-one international articles were screened, and sixty-six were retained. In these studies, which involved 157,035 subjects, the prevalence of MCI ranged from 1.2 to 87%. The review results showed a large heterogeneity among studies due to differences in the subjects' recruitment, the diagnostic criteria, the assessed cognitive domains, and other methodological aspects that account for a higher range of MCI prevalence. This large heterogeneity prevents drawing any firm conclusion about the prevalence of MCI.
Objective:
To examine the demographic drivers contributing to the future growth in the population of older migrants in Australia living with dementia.
Methods:
Using birthplace-specific cohort-component projection models, we projected the number of older migrants living with dementia. ABS data on births, deaths, migration and birthplace were used, alongside Australian Institute of Health and Welfare (AIHW) estimates of dementia prevalence with birthplace dementia weights calculated from administrative data.
Results:
The number of older migrants living with dementia is projected to increase from about 134,423 in 2016 to 378,724 by 2051. Increases in populations with dementia varied considerably, from a slight decrease for those born in Southern & Eastern Europe to over 600% increases amongst the South-East Asia, Southern & Central Asia, and Sub-Saharan Africa-born populations.
Conclusions:
Cohort flow is the primary driver increasing the number of older migrants living with dementia. This growth is largely inevitable because the cohorts are already living in Australia as part of the migrant population, but currently at ages below 60 years.
Implications for public health:
High relative growth and shifting birthplace composition in the number of migrants living with dementia poses implications for culturally appropriate care, health care access and workforce needs to support migrant families, carers and their communities.
Objectives:
40% of dementia cases can be prevented by addressing 12 lifestyle factors. These risk factors have increased presence in ethnic minorities, yet dementia prevention messages have not reached these communities. This article investigates the experience of co-designing a dementia prevention animated film with 9 ethnic groups in Australia.
Methods:
Evidence-based recommendations were adapted through an iterative process involving workshops with a stakeholder advisory committee and nine focus groups with 104 participants from the Arabic-, Hindi-, Tamil-, Cantonese-, Mandarin-, Greek-, Italian-, Spanish-, and Vietnamese-speaking communities. Data were analyzed using the Normalization Process Theory.
Results:
Cultural adaptation involves consideration of the mode of delivery, imagery and tone of the resource being developed; ensuring cultural adequacy; anticipating the need of the end-users; and managing linguistic challenges associated with working across multiple languages.
Conclusions:
Learnings from this co-design process offer valuable insights for researchers and program developers who work with ethnic minority groups.
Clinical implications:
• Adaptation across cultures and languages is a negotiation not a consensus building exercise• Linguistic adaptation requires consideration of the education levels, and linguistic and intergenerational preferences of community members• Co-designing across multiple languages and cultures risks "flattening out" key aspects of cultural specificity.
The PhD dissertation explored: 1) a multilayered image of the dementia experience and dementia care provision among labor migrant families, and 2) methodological pathways to contribute to more ethical research involving this population. The findings of this dissertation are based on five studies.
The findings show that the experience of dementia and the dementia care trajectory is defined by the intersectional social position of older labor migrants and their families, inviting us to move beyond the binary division between migrants and non-migrants with “having a different culture” as the division line. This while recognizing the impact of having a migration background, a non-normative culture and
religion on care provision. The current dementia care is provided by a complex and dynamic transnational network of informal and formal caregivers that also includes alternative care forms.
This picture of care provision is sought by family caregivers as an answer to their unmet care needs: A “complexity-sensitive person-centered responsive care” considers the multilayered identity of the older migrant with dementia. This reflects individual and structural professional care gaps to provide inclusive dementia care. Understanding this complexity can advance the provision of better dementia care for older migrants with dementia. Therefore, a new conceptual lens to examine dementia care for a diverse population is suggested.
This dissertation also contributes to the debate on how to conduct ethical research on dementia among older migrants by moving away from the culturalist frame where it is currently embedded with biased and narrow assumptions about this population as a result. This dissertation suggests therefore a further exploration of decolonial frameworks as compass for an ethical gerontological research praxis: a praxis that engages us into a process of awareness of and resistance to the historically rooted coloniality of mind in our own knowledge production.
The global population aging is the most evident, ongoing demographic phenomenon and is involving both migrants and their native counterparts in host countries. As a result, migrants are growingly dealing with age-related pathological conditions with important societal, clinical, and public health implications. Specifically, the occurrence of dementia and cognitive disturbances in individuals with a migration background may assume special relevance. Indeed, the migrant status can affect the individual’s dementia risk, the accessibility and use of dedicated healthcare resources, the clinical and diagnostic approach, the cognitive and neuropsychological assessments, and the whole process of care and support. Accordingly, the development of intercultural care and support for people with a migration background living with dementia should increasingly be regarded as a priority for our healthcare systems. In the present chapter, the main complexities surrounding the issue of dementia among aging migrants are outlined and discussed. Moreover, recommendations/points for reflection are provided with the aims of (1) ensuring an equitable and culturally-competent provision of dementia care and support, (2) reducing disparities in the access to dedicated healthcare resources, and (3) improving the situation of patients, families and professional caregivers from minority ethnic backgrounds.
Due to demographic aging, the global prevalence of cognitive disorders is expected to increase significantly over the coming decades. At the same time, migration and globalization are currently changing populations throughout the World. With an increasing number of aging migrants, the prevalence of cognitive disorders will inevitably increase in these populations. This poses challenges to neurological practice, including cross-cultural cognitive examination. In particular, language barriers may pose a complex challenge to cognitive examinations in aging migrants and may necessitate the use of interpreters. Despite the development and implementation of several biomarkers for Alzheimer’s disease and other cognitive disorders, cognitive testing retains a central role in the clinical diagnosis of cognitive disorders. However, many routinely used cognitive tests suffer from both cultural, language, and educational biases which limit their usefulness for the purpose of cross-cultural cognitive examinations. This may be particularly evident in the case of aging migrants with limited schooling and proficiency in the majority language in the receiving country. The use of professional interpreters and cross-cultural tests designed and validated for cognitive examination in aging migrants may help alleviate some of the cultural, language and educational biases. However, several challenges associated with cross-cultural cognitive examination remain unresolved. With increasing demographic aging, migration and globalization, however, researchers and clinicians need to address these challenges, as we must expect experience with cross-cultural cognitive examination to represent an important competence in clinical neurology in the twenty-first century.
Background
Performance on traditional neuropsychological tests is influenced by factors such as culture, language, (quality of) education, and literacy. As Europe is becoming increasingly diverse, neuropsychological assessment practices need to be adapted to these diverse populations. The aims of this study were to examine the current state of cross‐cultural neuropsychological assessment in Europe and to provide recommendations for researchers and policy makers on this topic.
Method
Twelve experts from nine European countries participated in a Delphi study involving two survey rounds and a group discussion stage. The surveys consisted of open‐ended questions and importance ratings (score out of 10).
Result
Across Europe, several cross‐cultural (adaptations of) neuropsychological tests are available, as well as a limited number of initiatives for training. The main priorities that were identified were the development of tests (median importance rating 10, Q1‐Q3: 9‐10) and norms (median importance rating 9, Q1‐Q3: 8‐10), as well as training, awareness and knowledge among European neuropsychologists (median importance rating 9, Q1‐Q3: 8‐10). According to the Delphi panelists, future focus should be on tests of social cognition (median 9, Q1‐Q3: 8‐10) and language (median 9, Q1‐Q3: 7‐10), closely followed by other domains, such as executive functioning (median 8, Q1‐Q3: 8‐10).
Conclusion
European experts agree that developing tests should be a priority, in particular tests of social cognition and language. European guidelines should be established for working with interpreters in a neuropsychological assessment. Furthermore, training needs to be improved across Europe. A list of recommendations was generated describing essential skills and knowledge necessary for cross‐cultural neuropsychological assessment.
Objective:
The increasing ethnic diversity in the European Union (EU) calls for adaptations to neuropsychological assessment practices. The aims of this study were to examine the current state of cross-cultural neuropsychological assessment in EU-15 countries and to provide recommendations for researchers and policy makers.
Method:
Twelve experts from nine EU-15 countries participated in a Delphi consensus study involving two sequential rounds of web-based questionnaires and an in-person consensus meeting. The experts individually rated Delphi topics on the basis of importance (scale 1-10). The degree of consensus was determined by assessing first and third quartiles (Q1 and Q3) and medians.
Results:
Consensus outcomes showed the following priorities: (a) the development of tests (median importance rating 10, Q1-Q3: 9-10), (b) the collection of normative data (median importance rating 9, Q1-Q3: 8-10), and (c) more training, awareness, and knowledge regarding cross-cultural assessment among neuropsychologists in the EU (median importance rating 9, Q1-Q3: 8-10). Whereas memory tests were often available, tests measuring social cognition (median 9, Q1-Q3: 8-10) and language (median 9, Q1-Q3: 7-10) are particularly lacking. Recommendations were made regarding essential skills and knowledge necessary for cross-cultural neuropsychological assessment.
Conclusions:
This study in a small group of experts suggests that the development and availability of cross-cultural tests and normative data should be prioritized, as well as the development and implementation of training initiatives. Furthermore, EU guidelines could be established for working with interpreters during neuropsychological assessment. Before implementing these recommendations, follow-up studies are recommended that include more minority neuropsychologists and community stakeholders.
Many publications on dementia start by outlining the current estimated number of people with dementia and how that figure is going to double (in Western societies) or even quadruple (in developing countries) in the coming decades as a result of increasing life expectancy (in itself a good development). Dementia is therefore a huge challenge to society, both in terms of providing good care for persons living with dementia and their family caregivers, as well as in searching for curative solutions. Both these challenges are complex. Fortunately, recent research indicates primary prevention to be a promising additional strategy in the dementia quest. Now that epidemiological research robustly shows the link between lifestyle and risk of dementia, new challenges emerge, such as how to increase public awareness about brain health, how to develop and implement strategies to promote brain healthy lifestyles and how to avoid increasing health inequalities. Interdem, the pan-European network of researchers on Psychosocial Interventions in Dementia, strongly welcomes this new strategy and consequently established a taskforce on primary prevention. In this position paper, we outline what we see as main building blocks of primary prevention of dementia.
Background:
The construct of mild cognitive impairment (MCI) is triggering growing clinical and research interest. The detection of MCI may be affected by diverse ethno-cultural determinants possibly influencing the personal and social perception of the individual cognitive functioning as well as the reliability of objective cognitive assessment. These challenges may acquire special relevance in subjects with a migration background and composing ethnic minority groups.
Objective:
The present study is aimed at providing an estimate of the number of MCI cases occurring in the migrant population living in the extended European Union (EU) in 2018.
Methods:
The number of MCI cases in older migrants living in Europe and in each of the 32 considered countries was estimated by multiplying the number of migrants, provided by Eurostat, with the age-specific prevalence rates, derived by the harmonized data produced by the COSMIC collaboration and based on different operational definitions of MCI.
Results:
Nearly 686,000 cases of MCI were estimated in the extended EU by applying age-specific prevalence rates based on the International Working Group criteria. Higher figures were obtained when the Clinical Dementia Rating- and the Mini Mental State Examination-based criteria were applied. The proportion of MCI cases in migrant subjects ranged from 1.1% (Romania) to 54.1% (Liechtenstein) (median: 8.4%; IQR: 4.7%-14.2%).
Conclusions:
MCI represents and will increasingly constitute a relevant issue in the migrant population living in Europe. The present data reinforce the need of developing approaches and models of care that may be diversity-sensitive and inclusive for a culturally variegated population.
Background and objectives:
By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing.
Research design and methods:
A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules.
Findings:
Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks.
Implications:
Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care-support can achieve this.
In applied problems it is common to specify a model for the conditional mean of a response given a set of regressors. A subset of the regressors may be missing for some study subjects either by design or happenstance. In this article we propose a new class of semiparametric estimators, based on inverse probability weighted estimating equations, that are consistent for parameter vector α0 of the conditional mean model when the data are missing at random in the sense of Rubin and the missingness probabilities are either known or can be parametrically modeled. We show that the asymptotic variance of the optimal estimator in our class attains the semiparametric variance bound for the model by first showing that our estimation problem is a special case of the general problem of parameter estimation in an arbitrary semiparametric model in which the data are missing at random and the probability of observing complete data is bounded away from 0, and then deriving a representation for the efficient score, the semiparametric variance bound, and the influence function of any regular, asymptotically linear estimator in this more general estimation problem. Because the optimal estimator depends on the unknown probability law generating the data, we propose locally and globally adaptive semiparametric efficient estimators. We compare estimators in our class with previously proposed estimators. We show that each previous estimator is asymptotically equivalent to some, usually inefficient, estimator in our class. This equivalence is a consequence of a proposition stating that every regular asymptotic linear estimator of α0 is asymptotically equivalent to some estimator in our class. We compare various estimators in a small simulation study and offer some practical recommendations.
Statistics on ethnicity, if not on ‘race’, are common in a large number of countries around the world, but not in the western part of Europe. This divergence can be explained by legal prohibitions attached to data protection provisions and by a political reluctance to recognize and emphasize ethnic diversity in official statistics. Following different traditions of political framing, northern, central and eastern European countries have implemented different ways of collecting ‘ethnic statistics’. This article provides a review of the heterogeneity of methodologies used for converting ethnicity into statistics and discusses their limitations for any potential standardization. As part of the enforcement of anti-discrimination policies, European human rights institutions are urging a reconsideration of the choice of ‘colour-blind’ statistics. Counting or not counting by ethnicity raises epistemological and methodological dilemmas which this article attempts to identify.
Objective: To estimate the prevalence of dementia and its subtypes in the general population and examine the relation of the disease to education.
Design: Population based cross sectional study.
Setting: Ommoord, a suburb of Rotterdam.
Subjects: 7528 participants of the Rotterdam study aged 55-106 years.
Results: 474 cases of dementia were detected, giving an overall prevalence of 6.3%. Prevalence ranged from 0.4% (5/1181 subjects) at age 55-59 years to 43.2% (19/44) at 95 years and over. Alzheimer's disease was the main subdiagnosis (339 cases; 72%); it was also the main cause of the pronounced increase in dementia with age. The relative proportion of vascular dementia (76 cases; 16%), Parkinson's disease dementia (30; 6%), and other dementias (24; 5%) decreased with age. A substantially higher prevalence of dementia was found in subjects with a low level of education. The association with education was not due to confounding by cardiovascular disease.
Conclusions: The prevalence of dementia increases exponentially with age. About one third of the population aged 85 and over has dementia. Three quarters of all dementia is due to Alzheimer's disease. In this study an inverse dose-response relation was found between education and dementia—in particular, Alzheimer's disease.
Key messages
Key messagesOf all cases of dementia, 72% were cases of Alzheimer's diseaseThe pronounced increase in prevalence of dementia with age was due to a substantial increase in Alzheimer's diseaseAlzheimer's disease was more often diagnosed in less educated peopleThe association between dementia and education could not be explained by cardiovascular disease comorbidity
Preliminary studies in the UK, all using screening instruments of unknown cultural validity, indicate that there may be an increased prevalence of dementia in African-Caribbean people, possibly related to vascular risk factors and potentially amenable to preventative measures.
To determine the prevalence of dementia in older people of African-Caribbean country of birth compared with their White UK-born counterparts.
A total of 218 people of African-Caribbean country of birth and 218 White UK-born people aged ≥60 years were recruited from five general practices in North London. Those who screened positive for cognitive impairment using a culturally valid instrument were offered a standardised diagnostic interview. Two independent assessors diagnosed dementia according to standard operationalised criteria.
African-Caribbean participants were 2 years younger, and those with dementia nearly 8 years younger than their White counterparts. The prevalence of dementia was significantly higher in the African-Caribbean (9.6%) than the White group (6.9%) after adjustment for the confounders age and socioeconomic status (odds ratio (OR) = 3.1, 95%CI 1.3-7.3, P = 0.012).
There is an increased prevalence of dementia in older people of African-Caribbean country of birth in the UK and at younger ages than in the indigenous White population. These findings have implications for service provision and preventive interventions. Further research is needed to explore the role of vascular risk factors and social adversity in the excess of dementia in this population.
Illiterates represent a significant proportion of the world's population. Written language not only plays a role in mediating cognition, but also extends our knowledge of the world. Two major reasons for illiteracy can be distinguished, social (e.g., absence of schools), and personal (e.g., learning difficulties). Without written language, our knowledge of the external world is partially limited by immediate sensory information and concrete environmental conditions. Literacy is significantly associated with virtually all neuropsychological measures, even though the correlation between education and neuropsychological test scores depends on the specific test. The impact of literacy is reflected in different spheres of cognitive functioning. Learning to read reinforces and modifies certain fundamental abilities, such as verbal and visual memory, phonological awareness, and visuospatial and visuomotor skills. Functional imaging studies are now demonstrating that literacy and education influence the pathways used by the brain for problem-solving. The existence of partially specific neuronal networks as a probable consequence of the literacy level supports the hypothesis that education impacts not only the individual's day-to-day strategies, but also the brain networks. A review of the issues related to dementia in illiterates is presented, emphasizing that the association between the education level and age-related cognitive changes and education remains controversial. The analysis of the impact of illiteracy on neuropsychological test performance represents a crucial approach to understanding human cognition and its brain organization under normal and abnormal conditions.
To determine the prevalence of depression in migrants aged 50 years or older in comparison to residents without a history of migration in 11 European countries.
The Survey of Health, Ageing and Retirement in Europe (SHARE), a cross-national, multidisciplinary, household-based panel survey using nationally representative probability samples (n=28,517) of 11 European countries of the non-institutionalized population aged 50 years and older. Depression was measured using the EURO-D scale, and odds ratios (OR) were estimated for migration status. Effects of sociodemographic variables, somatic comorbidities, functional impairment, cognitive function, geographic region, and time lived in current country of residence were assessed in multivariate logistic regression analysis.
Adjusting for confounds, the OR for depression in migrants was 1.42 (95% CI, 1.28-1.59). The influence of migration status on the prevalence of depression was significantly greater in Northern (OR, 1.85; 95% CI, 1.39-2.46) and Western Europe (OR, 1.38; 95% CI, 1.22-1.57), compared to Southern Europe (OR, 1.16; 95% CI, 0.79-1.70) (p<0.05 for the interaction).
We found a higher prevalence of depression in first-generation migrants aged 50 years or older, together with relevant geographical variation. This difference was not due to other known predictors of depression in older age.
In the past 10 years, there has been a virtual explosion in the literature concerning the construct of mild cognitive impairment. The interest in this topic demonstrates the increasing emphasis on the identification of the earliest features of cognitive disorders such as Alzheimer disease and other dementias. Mild cognitive impairment represents the earliest clinical features of these conditions and, hence, has become a focus of clinical, epidemiologic, neuroimaging, biomarker, neuropathological, disease mechanism, and clinical trials research. This review summarizes the progress that has been made while also recognizing the challenges that remain.
While the prevalence of type 2 diabetes mellitus (DM) is high, tailored risk scores for screening among South Asian and African origin populations are lacking. The aim of this study was, first, to compare the prevalence of (known and newly detected) DM among Hindustani Surinamese, African Surinamese and ethnic Dutch (Dutch). Second, to develop a new risk score for DM. Third, to evaluate the performance of the risk score and to compare it to criteria derived from current guidelines.
We conducted a cross-sectional population based study among 336 Hindustani Surinamese, 593 African Surinamese and 486 Dutch, aged 35-60 years, in Amsterdam. Logistic regressing analyses were used to derive a risk score based on non-invasively determined characteristics. The diagnostic accuracy was assessed by the area under the Receiver-Operator Characteristic curve (AUC).
Hindustani Surinamese had the highest prevalence of DM, followed by African Surinamese and Dutch: 16.7, 8.1, 4.2% (age 35-44) and 35.0, 19.0, 8.2% (age 45-60), respectively. The risk score included ethnicity, body mass index, waist circumference, resting heart rate, first-degree relative with DM, hypertension and history of cardiovascular disease. Selection based on age alone showed the lowest AUC: between 0.57-0.62. The AUC of our score (0.74-0.80) was higher than that of criteria from guidelines based solely on age and BMI and as high as criteria that required invasive specimen collection.
In Hindustani Surinamese and African Surinamese populations, screening for DM should not be limited to those over 45 years, as is advocated in several guidelines. If selective screening is indicated, our ethnicity based risk score performs well as a screening test for DM among these groups, particularly compared to the criteria based on age and/or body mass index derived from current guidelines.
In preparing for the publication of ICD-10, the Division of Mental Health of the World Health Organization developed several versions of chapter V, which deals with mental and behavioral disorders. The version for research purposes is called the Diagnostic Criteria for Research (ICD-10 DCR) and gives operational criteria for the diagnosis of mental disorders. This article describes the results of international field trials undertaken to evaluate the draft criteria and refine them further.
Data were obtained to assess interrater agreement, the confidence with which diagnoses could be made, and the ease of use of the criteria. Additional substudies examined the concordance between ICD-10 DCR, ICD-10 Clinical Descriptions and Diagnostic Guidelines, and other national classification systems (e.g., DSM-IV). The field trials were carried out at 151 clinical centers in 32 countries by 942 clinician/researchers who conducted 11,491 individual assessments of patients. Results for cases assessed by at least two raters are reported here.
Most clinician/researchers found the criteria to be explicit and easy to apply. Interrater agreement was high for most diagnostic categories. For some categories, such as those dealing with certain polymorphic psychotic disorders or milder forms of affective disorders, the criteria were rated as somewhat difficult to use, and reliability was lower. Comparison of the results of these field trials with those of the ICD-10 Clinical Descriptions and Diagnostic Guidelines demonstrated that there are increases in interrater agreement when the operational criteria are used.
The use of internationally accepted research criteria enhances the reliability of diagnosis of mental disorders made in research settings worldwide.
In the UK, 6% of those aged 65 years and over were born abroad, most of whom now live in inner-city areas. It has been suggested that ethnic elders are particularly vulnerable to mental illness.
To compare the prevalence of dementia and depression in older migrants with those born in the UK.
A cross-sectional community study of 1085 people aged 65 years or older in an inner-London borough.
Compared with those born in the UK, the prevalence of dementia was raised in African-Caribbeans (17.3%, relative risk=1.72, Cl=1.06-2.81) and lower for the Irish-born (3.6%, relative risk=0.36, Cl=0.17-0.87). All those of African-Caribbean country of birth were significantly younger (P=0.000) but no more likely to be taking antihypertensive drugs. They were no more likely to report having cardiovascular problems but had increased rates of diabetes (P<0.0000). The overall prevalence of depression was 18.3% (95% Cl=16.1-20.7). The highest prevalence rate was found among those born in Greece and Turkey (27.2%, Cl=17.9-39.6). Migration per se does not appear to be a risk for depression and dementia in this population.
The excess of dementia may be of vascular aetiology. There is the potential for primary or secondary prevention.
The IQCODE is widely used as a screening test for dementia, particularly where the subject is unable to undergo direct cognitive testing or for screening in populations with low levels of education and literacy. This review draws together research on the psychometric properties and validity of the IQCODE.
A systematic search of the literature was carried out using three databases.
The review shows that the questionnaire has high reliability and measures a single general factor of cognitive decline. It validly reflects past cognitive decline, performs at least as well at screening as conventional cognitive screening tests, predicts incident dementia, and correlates with a wide range of cognitive tests. A particular strength is that the IQCODE is relatively unaffected by education and pre-morbid ability or by proficiency in the culture's dominant language. The disadvantage of the IQCODE is that it is affected by informant characteristics such as depression and anxiety in the informant and the quality of the relationship between the informant and the subject.
Because the IQCODE provides information complementary to brief cognitive tests, harnessing them together can improve screening accuracy.
It is proposed that culture (values, beliefs, styles of behavior) can affect neuropsychological testing. Cognitive testing represents a social situation that-as any social situation, it is one governed by implicit cultural rules. At least eight different culture-dependent values underlie cognitive testing: (1) One-to-one relationship, (2) Background authority, (3) Best performance, (4)Isolated environment (5) Special type of communication, (6) Speed, (7) Internal or subjective issues, and (8) The use of specific testing elements and strategies. In addition, it is proposed that"the distance" (e.g., gender, age, ethnicity) between the examiner and the examinee may potentially impact the testing situation. A special analysis regarding the function of instruction in cognitive tests is also presented emphasizing that test instruction interpretation is also culture-dependent. Some potential avenues of research are finally proposed.
A potential test for early detection of dementia in the elderly is the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), which is based on information from the informant for the elderly about the changes of the elderly in everyday cognitive functioning associated with dementia. The present study aimed to modify and assess the reliability and validity of the modified IQCODE consisting of 32 items. The study consisted of two methods of assessing dementia: DSMIV diagnosis carried out by clinicians, and informants responding to the IQCODE. The subjects were 200 pairs of elderly subjects and their informants who visited the Geriatric Clinic, Ramathibodi Hospital. The optimal cutoff score on the modified IQCODE was 3.42, with 90% sensitivity and 95% specificity. The positive predictive values, negative predictive values, and accuracy were 0.94, 0.90, and 0.92, respectively. The IQCODE items had high internal consistency. The IQCODE associated with the elderly person's age, but not with their gender and educational level; nor were they associated with the demographic characteristics of the informant. Therefore, the IQCODE could be used as an alternative screening test for dementia in Thailand with acceptable sensitivity and specificity. This tool may be useful for dementia screening in the community and the geriatric clinic for early detection of disease.
Latin America, China and India are experiencing unprecedentedly rapid demographic ageing with an increasing number of people with dementia. The 10/66 Dementia Research Group's title refers to the 66% of people with dementia that live in developing countries and the less than one tenth of population-based research carried out in those settings. This paper describes the protocols for the 10/66 population-based and intervention studies that aim to redress this imbalance.
Cross-sectional comprehensive one phase surveys have been conducted of all residents aged 65 and over of geographically defined catchment areas in ten low and middle income countries (India, China, Nigeria, Cuba, Dominican Republic, Brazil, Venezuela, Mexico, Peru and Argentina), with a sample size of between 1000 and 3000 (generally 2000). Each of the studies uses the same core minimum data set with cross-culturally validated assessments (dementia diagnosis and subtypes, mental disorders, physical health, anthropometry, demographics, extensive non communicable disease risk factor questionnaires, disability/functioning, health service utilisation, care arrangements and caregiver strain). Nested within the population based studies is a randomised controlled trial of a caregiver intervention for people with dementia and their families (ISRCTN41039907; ISRCTN41062011; ISRCTN95135433; ISRCTN66355402; ISRCTN93378627; ISRCTN94921815). A follow up of 2.5 to 3.5 years will be conducted in 7 countries (China, Cuba, Dominican Republic, Venezuela, Mexico, Peru and Argentina) to assess risk factors for incident dementia, stroke and all cause and cause-specific mortality; verbal autopsy will be used to identify causes of death.
The 10/66 DRG baseline population-based studies are nearly complete. The incidence phase will be completed in 2009. All investigators are committed to establish an anonymised file sharing archive with monitored public access. Our aim is to create an evidence base to empower advocacy, raise awareness about dementia, and ensure that the health and social care needs of older people are anticipated and met.
A cross-sectional, population-based, 2-stage prevalence study was conducted in a sample of 1019 community-dwelling persons over the age of 70 years living in Istanbul. In the first phase, participants were screened with the Mini-Mental State Examination for evidence of cognitive impairment. In the second phase, 79% of those who screened positive (n = 322) and 9% of screen-negatives (n = 63) underwent a standardized diagnostic workup. Diagnosis of dementia and Alzheimer's disease (AD) was made according to established criteria. Ninety-three cases of dementia were identified, 58 of whom were diagnosed with probable AD. Based on these numbers, the prevalence rates of probable AD and dementia were calculated to be 11.0% (95% CI, 7.0% to 15.0%) and 20.0% (95% CI, 14.0% to 26.0%), respectively, in this population. Prevalence rates of dementia and AD in Istanbul, Turkey, are comparable with those seen in the Western world.
Volgens rapport van de Wereld Gezondheidsorganisatie uit 2003 is de ziektelast van dementie hoger dan van welke andere aandoening dan ook. Zij brengt zeer hoge kosten met zich mee voor zowel de gezondheidszorg als de maatschappelijke dienstverlening en tevens door de grote behoefte aan institutionele zorg. Alzheimer Disease International, het overkoepelende orgaan van vele nationale Alzheimer organisaties, heeft een internationale groep van deskundigen bijeengeroepen om evidencebased ramingen te maken van de prevalentie van dementie in alle regio’s van de wereld voor nu en in de toekomst (2020- 2040).
Brain aging is characterized by the progressive and gradual accumulation of detrimental changes in structure and function, which increase risk of age-related cognitive decline and dementia. This devastating chronic condition generates a huge social and economic burden and accounts for 11.2% of years of disability. The increase in lifespan has contributed to the increase in dementia prevalence; however, there is currently no curative treatment for most causes of dementias. This paper reviews evidence-based strategies to build, enhance, and preserve cognition over the lifespan by examining approaches that work best, proposing when in the life course they should be implemented, and in which population group(s). Recent work shows a tendency to decreased age-specific prevalence and incidence of cognitive problems and dementia among people born later in the first half of the 20th century, citing higher educational levels, improvements in lifestyle, and better handling of vascular risk factors. This implies that we can target modifiable environmental, lifestyle, and health risk factors to modify the trajectory of cognitive decline before the onset of irreversible dementia. Because building cognitive reserve and prevention of cognitive decline are of critical importance, interventions are needed at every stage of the life course to foster cognitive stimulation, and enable healthy eating habits and physical activity throughout the lifespan. Preventive interventions to decrease and delay cognitive decline and its consequences in old age will also require collaboration and action on the part of policy-makers at the political and social level.
Discrimination is linked to various health problems, including mental disorders like depression and also has a negative effect on the access to mental health care services. Little is known about factors mitigating the association between ethnic discrimination and mental distress.
The present study examined the extent of the relationship between perceived ethnic discrimination and psychological distress among women of Turkish origin residing in Berlin, and explored whether this association is moderated by acculturation strategies while controlling for known predictors of distress in migrant populations.
A total of 205 women of Turkish origin participated in the study. 55.1 % of the participants reported some degree of ethnic discrimination. The degree of reported discrimination varied according to acculturation. The highest level of ethnic discrimination was found in the second generation separated group and both generations of the marginalized group. Further, the results indicate an association between ethnic discrimination and distress while adjusting for known socio-demographic predictors of distress, migration-related factors, and neuroticism (B = 5.56, 95 % CI 2.44-8.68, p < 0.001). However, the relationship did vary as a function of acculturation strategy, showing an association only in the separated group.
The findings highlight the effects of ethnic discrimination beyond the influence of known risk factor for psychological distress in migrants, such as unemployment, being single, having a limited residence permit or the presence of personality structures that may increase vulnerability for stress responses and mental disorders.
Introduction: In the Netherlands, older adults of Turkish, Moroccan and Surinamese descent form the largest groups of “first-generation immigrants”. Next decade, they will comprise 5% of the general Dutch population. When compared to native Dutch, rates of general health problems and chronic diseases are higher among older immigrants. With the aging of the first generation immigrants and the higher prevalence of cardiovascular diseases, the incidence of mild cognitive impairment (MCI) and dementia are expected to increase as well. This paper presents the design of a population-based, cross-sectional cohort study to assess prevalence of MCI and dementia in the largest immigrant groups in the Netherlands.
Methods/Design: Participants, aged 55 years and older, of Dutch, Turkish, Moroccan (Arabic and Berber speaking), and Surinamese (Hindi and Sranantongo speaking) background, will be recruited via their general practitioners. Main outcome is the prevalence of MCI and dementia in these largest immigrant groups in the Netherlands. Secondary outcomes are prevalence of other relevant health problems in older immigrant adults, e.g. comorbidity, loneliness, depression, health related quality of life, care needs and use of care by older immigrant adults with diagnosed dementia. Cognitive functioning is assessed by the Cross Cultural Dementia screening, which was designed specifically for illiterate or low-educated people from different cultures speaking different languages. Secondary outcomes will be assessed by means of a systematic comprehensive geriatric assessment.
Discussion: This study will provide important information on the prevalence of MCI and dementia and related comorbidity in older immigrants in the Netherlands.
Background and purpose:
Low socioeconomic status has been linked to high incidence of stroke in industrialized countries; therefore, reducing socioeconomic disparities is an important goal of health policy. The evidence on migrant groups is, however, limited and inconsistent. We assessed socioeconomic inequalities in relation to stroke incidence among major ethnic groups in the Netherlands.
Methods:
A nationwide register-based cohort study was conducted (n=2 397 446) between January 1, 1998, and December 31, 2010, among ethnic Dutch and ethnic minority groups. Standardized disposable household income was used as a measure of socioeconomic position.
Results:
Among ethnic Dutch, the incidence of stroke was higher in the low-income group than in the high-income group (adjusted hazard ratio, 1.18; 95% confidence interval, 1.16-1.20). Similar socioeconomic inequalities in stroke incidence were found among Surinamese (1.36; 1.17-1.58), Indonesians (1.15; 1.03-1.28), Moroccans (1.54; 0.97-2.43), Turkish (1.19; 0.97-1.46), and to a lesser extent among Antilleans (1.24; 0.84-1.84). When compared with ethnic Dutch, the incidence of stroke was lower in Moroccans, similar in Turkish, but higher in Surinamese among all income groups. The incidence of stroke was higher in Indonesian low- and high-income groups than in their ethnic Dutch counterparts. Among Antilleans, the risk of stroke was higher than ethnic Dutch but only in the low-income group.
Conclusions:
Our findings reveal socioeconomic inequalities in stroke incidence among all ethnic groups. Reduction of socioeconomic inequalities in stroke incidence among all ethnic groups may lead to a major public health improvement for all. Policy measures tackling socioeconomic inequalities should take into account the increased risk of stroke among ethnic minority populations.
The Informant Questionnaire on Cognitive Decline in the Elderly individuals (IQCODE) is a reliable, validated informant-based instrument. Most of the studies well support the validity of the IQCODE in dementia screening, but the sensitivity of the rating scale at the early stage during the course of dementia is limited. In this study, we investigate the utility of the IQCODE for patients with mild cognitive impairment (MCI) and the discriminative power of the IQCODE in patients having MCI with and without functional impairment. The samples included mild Alzheimer disease (AD, N = 280), MCI ([N = 657], further divided into 2 subgroups: patients with MCI having functional impairment [MCI-fi, N = 357] and patients having MCI without functional impairment [MCI-fn, N = 300]), and normal cognition (NC, N = 274). The IQCODE, Mini-Mental State Examination (MMSE), and other neuropsychological tests were administered to all participants. Logistic regression and receiver-operating characteristic (ROC) curves were used to evaluate the diagnostic ability of the IQCODE, compared to the MMSE. The optimal cutoff scores of the IQCODE were 3.19 for the MCI (sensitivity/specificity: 0.979/0.714) and MCI-fn (0.900/0.817), 3.25 for the MCI-fi (0.978/0.701), and 3.31 for mild AD (0.893/0.779), while the MMSE was identical, that is 26, for both MCI and its functional normal and functional impaired subgroups (0.892/0.755, 0.867/0.745, and 0.913/0.745, respectively) and 24 for mild AD (0.807/0.836). The discriminating accuracy of the IQCODE was slightly superior to that of the MMSE but did not reach statistical significance. Our study suggests that the IQCODE might be useful in screening for MCI, with hierarchical scores indicating functional normal or impaired.
Geographical variation in dementia prevalence and incidence may indicate important socio-environmental contributions to dementia aetiology. However, previous comparisons have been hampered by combining studies with different methodologies. This review systematically collates and synthesizes studies examining geographical variation in the prevalence and incidence of dementia based on comparisons of studies using identical methodologies.
Papers were identified by a comprehensive electronic search of relevant databases, scrutinising the reference sections of identified publications, contacting experts in the field and re-examining papers already known to us. Identified articles were independently reviewed against inclusion/exclusion criteria and considered according to geographical scale. Rural/urban comparisons were meta-analysed.
Twelve thousand five hundred and eighty records were reviewed and 51 articles were included. Dementia prevalence and incidence varies at a number of scales from the national down to small areas, including some evidence of an effect of rural living [prevalence odds ratio (OR) = 1.11, 90% confidence interval (CI) 0.79-1.57; incidence OR = 1.20, 90% CI 0.84-1.71]. However, this association of rurality was stronger for Alzheimer disease, particularly when early life rural living was captured (prevalence OR = 2.22, 90% CI 1.19-4.16; incidence OR = 1.64, 90% CI 1.08-2.50).
There is evidence of geographical variation in rates of dementia in affluent countries at a variety of geographical scales. Rural living is associated with an increased risk of Alzheimer disease, and there is a suggestion that early life rural living further increases this risk. However, the fact that few studies have been conducted in resource-poor countries limits conclusions.
Growing epidemiological evidence suggests that premorbid participation in cognitive leisure activities (CLA) reduces the risk of dementia by increasing cognitive reserve. We investigated the differential effect of CLA, education, and socioeconomic status (SES) on the development of mild cognitive impairment (MCI) and Alzheimer's disease (AD). Participants in the prospective population-based ILSE study (*1930-1932; 12-year follow-up) were examined in three examination waves (t1:1993/94; t2:1997/98; t3:2005/07). In total, 381 subjects of the original cohort (n=500) were re-examined at t3. Of these subjects 29% received the diagnosis of MCI and 7% of AD. Subjects participated in a thorough psychogeriatric examination and neuropsychological testing. Moreover, they took part in a detailed autobiographical interview and completed questionnaires including socio-demographic data and current frequency of participation in CLA. Subjects who were highly cognitively active at t1 had a significantly reduced risk of developing MCI/AD at t3 (scores adjusted for education, SES, gender, and depressive symptoms). Additionally, high education and high SES separately reduced the risk of MCI and AD. Our results confirm the hypothesis that a high level of CLA acts as a protective factor against the development of MCI and AD by increasing cognitive reserve. This effect is not accounted for by important potential confounders.
As the population ages, the need to characterize rates of cognitive impairment and dementia within demographic groups defined by age, sex, and race becomes increasingly important. There are limited data available on the prevalence and incidence of amnestic mild cognitive impairment (aMCI) and nonamnestic mild cognitive impairment (naMCI) from population-based studies. The Einstein Aging Study, a systematically recruited community-based cohort of 1944 adults aged 70 or older (1168 dementia free at baseline; mean age, 78.8 y; average follow-up, 3.9 y), provides the opportunity to examine the prevalence and incidence rates for dementia, Alzheimer dementia (AD), aMCI, and naMCI by demographic characteristics. Dementia prevalence was 6.5% (4.9% AD). Overall dementia incidence was 2.9/100 person-years (2.3/100 person-years for AD). Dementia and AD rates increased with age but did not differ by sex. Prevalence of aMCI was 11.6%, and naMCI prevalence was 9.9%. aMCI incidence was 3.8 and naMCI incidence was 3.9/100 person-years. Rates of aMCI increased significantly with age in men and in blacks; sex, education, and race were not significant risk factors. In contrast, naMCI incidence did not increase with age; however, blacks were at higher risk compared with whites, even when controlling for sex and education. Results highlight the public health significance of preclinical cognitive disease.
This scientific statement provides an overview of the evidence on vascular contributions to cognitive impairment and dementia. Vascular contributions to cognitive impairment and dementia of later life are common. Definitions of vascular cognitive impairment (VCI), neuropathology, basic science and pathophysiological aspects, role of neuroimaging and vascular and other associated risk factors, and potential opportunities for prevention and treatment are reviewed. This statement serves as an overall guide for practitioners to gain a better understanding of VCI and dementia, prevention, and treatment.
Writing group members were nominated by the writing group co-chairs on the basis of their previous work in relevant topic areas and were approved by the American Heart Association Stroke Council Scientific Statement Oversight Committee, the Council on Epidemiology and Prevention, and the Manuscript Oversight Committee. The writing group used systematic literature reviews (primarily covering publications from 1990 to May 1, 2010), previously published guidelines, personal files, and expert opinion to summarize existing evidence, indicate gaps in current knowledge, and, when appropriate, formulate recommendations using standard American Heart Association criteria. All members of the writing group had the opportunity to comment on the recommendations and approved the final version of this document. After peer review by the American Heart Association, as well as review by the Stroke Council leadership, Council on Epidemiology and Prevention Council, and Scientific Statements Oversight Committee, the statement was approved by the American Heart Association Science Advisory and Coordinating Committee.
The construct of VCI has been introduced to capture the entire spectrum of cognitive disorders associated with all forms of cerebral vascular brain injury-not solely stroke-ranging from mild cognitive impairment through fully developed dementia. Dysfunction of the neurovascular unit and mechanisms regulating cerebral blood flow are likely to be important components of the pathophysiological processes underlying VCI. Cerebral amyloid angiopathy is emerging as an important marker of risk for Alzheimer disease, microinfarction, microhemorrhage and macrohemorrhage of the brain, and VCI. The neuropathology of cognitive impairment in later life is often a mixture of Alzheimer disease and microvascular brain damage, which may overlap and synergize to heighten the risk of cognitive impairment. In this regard, magnetic resonance imaging and other neuroimaging techniques play an important role in the definition and detection of VCI and provide evidence that subcortical forms of VCI with white matter hyperintensities and small deep infarcts are common. In many cases, risk markers for VCI are the same as traditional risk factors for stroke. These risks may include but are not limited to atrial fibrillation, hypertension, diabetes mellitus, and hypercholesterolemia. Furthermore, these same vascular risk factors may be risk markers for Alzheimer disease. Carotid intimal-medial thickness and arterial stiffness are emerging as markers of arterial aging and may serve as risk markers for VCI. Currently, no specific treatments for VCI have been approved by the US Food and Drug Administration. However, detection and control of the traditional risk factors for stroke and cardiovascular disease may be effective in the prevention of VCI, even in older people.
Vascular contributions to cognitive impairment and dementia are important. Understanding of VCI has evolved substantially in recent years, based on preclinical, neuropathologic, neuroimaging, physiological, and epidemiological studies. Transdisciplinary, translational, and transactional approaches are recommended to further our understanding of this entity and to better characterize its neuropsychological profile. There is a need for prospective, quantitative, clinical-pathological-neuroimaging studies to improve knowledge of the pathological basis of neuroimaging change and the complex interplay between vascular and Alzheimer disease pathologies in the evolution of clinical VCI and Alzheimer disease. Long-term vascular risk marker interventional studies beginning as early as midlife may be required to prevent or postpone the onset of VCI and Alzheimer disease. Studies of intensive reduction of vascular risk factors in high-risk groups are another important avenue of research.
The prevalence of diabetes, other cardiovascular risk factors, and cardiovascular morbidity and mortality varies between immigrant groups in Western societies, but epidemiological data on these topics are scarce for Turks and Moroccan immigrant living in North West Europe.
Medline and Embase were systematically searched for studies containing data on the prevalence of diabetes, cardiovascular risk factors, and cardiovascular morbidity and mortality in Turkish or Moroccan immigrants living in Northwestern European countries.
Eighteen studies were identified. Corresponding findings were a high prevalence of type 2 diabetes in Turkish and Moroccan immigrants, a high prevalence of smoking among Turkish men, and a very low prevalence of smoking in Moroccan women compared to the indigenous population. Because of lack of valid studies, no definite conclusions could be drawn for in particular blood pressure and lipids. One German study showed exceptionally lower cardiovascular mortality rates in Turkish immigrants.
The reviewed studies yielded insufficient evidence for a good quality comparison of the cardiovascular risk profile between Turkish and Moroccan immigrants and indigenous populations. Diabetes mellitus was more prevalent in Turkish and Moroccan immigrants, smoking more prevalent in Turkish males, and very rare in Moroccan females.
The National Institute on Aging and the Alzheimer's Association charged a workgroup with the task of revising the 1984 criteria for Alzheimer's disease (AD) dementia. The workgroup sought to ensure that the revised criteria would be flexible enough to be used by both general healthcare providers without access to neuropsychological testing, advanced imaging, and cerebrospinal fluid measures, and specialized investigators involved in research or in clinical trial studies who would have these tools available. We present criteria for all-cause dementia and for AD dementia. We retained the general framework of probable AD dementia from the 1984 criteria. On the basis of the past 27 years of experience, we made several changes in the clinical criteria for the diagnosis. We also retained the term possible AD dementia, but redefined it in a manner more focused than before. Biomarker evidence was also integrated into the diagnostic formulations for probable and possible AD dementia for use in research settings. The core clinical criteria for AD dementia will continue to be the cornerstone of the diagnosis in clinical practice, but biomarker evidence is expected to enhance the pathophysiological specificity of the diagnosis of AD dementia. Much work lies ahead for validating the biomarker diagnosis of AD dementia.
The health condition in a population of elderly Turkish immigrants is investigated with special focus on dementia conditions. The possibility to use the screening test Mini Mental State Examination (MMSE) in relation to the investigated population is evaluated as well as their future need for a nursing home.
With the help of an interpreter, the Turkish population of elderly (> 60 years old) in the municipality of Ishöj was interviewed about educational-, working- and health conditions. In addition to MMSE and semi-structured interviews, the ICD-10 criteria were used in diagnosing dementia conditions.
We found an increased frequency of dementia conditions (13,3%) compared to the expected prevalence of 7% in the Danish population. Furthermore, we found an increased frequency of diabetes type-2. The use of MMSE as a guideline instrument of screening was shown to be applicable only with modifications to persons who were illiterates and without any education, and to those 1st-generation immigrants who were to a limited degree integrated as citizens
The increased incidence of dementia conditions and diabetes type-2 shows the need for a more assertive approach.
The Netherlands Study of Depression and Anxiety (NESDA) is a multi-site naturalistic cohort study to: (1) describe the long-term course and consequences of depressive and anxiety disorders, and (2) to integrate biological and psychosocial research paradigms within an epidemiological approach in order to examine (interaction between) predictors of the long-term course and consequences.
Its design is an eight-year longitudinal cohort study among 2981 participants aged 18 through 65 years. The sample consists of 1701 persons with a current (six-month recency) diagnosis of depression and/or anxiety disorder, 907 persons with life-time diagnoses or at risk because of a family history or subthreshold depressive or anxiety symptoms, and 373 healthy controls. Recruitment took place in the general population, in general practices (through a three-stage screening procedure), and in mental health organizations in order to recruit persons reflecting various settings and developmental stages of psychopathology. During a four-hour baseline assessment including written questionnaires, interviews, a medical examination, a cognitive computer task and collection of blood and saliva samples, extensive information was gathered about key (mental) health outcomes and demographic, psychosocial, clinical, biological and genetic determinants. Detailed assessments will be repeated after one, two, four and eight years of follow-up.
The findings of NESDA are expected to provide more detailed insight into (predictors of) the long-term course of depressive and anxiety disorders in adults. Besides its scientific relevance, this may contribute to more effective prevention and treatment of depressive and anxiety disorders. Copyright
The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) provides ratings of an individual's changes in everyday cognitive functions during the previous 10 years. Original studies conducted in Australia showed that its score was not influenced by the subjects' educational backgrounds and that it performed at least as well as the Mini-Mental State Examination (MMSE) as a screening instrument for dementia. The subjects of the present study were Chinese and included 399 community residents and 61 dementia patients. Their ages ranged from 50 to 92 years; their education levels ranged from 0 to 19 years, and 63% of them had never attended school. We administered the IQCODE to informants and the Cognitive Abilities Screening Instrument (CASI), from which a CASI-estimated score of the MMSE (MMSE-CE) can be obtained, to the subjects. The diagnosis of dementia was made independently by physicians according to the DSM-III-R criteria based on semistructured interview and testing, neurologic examination, and standardized assessments of cerebral vascular disease, Parkinson's disease, and depression. The Chinese IQCODE showed no association with the subjects' education level or gender, low association with their age, and moderately high association with their MMSE-CE score. The area under the receiver operating characteristic curve of the IQCODE was significantly larger than that of the MMSE-CE for the whole group and for the subgroup with 1 to 19 years of education but not for the subgroup with 0 years of education. Nine of the 26 items of the IQCODE could be deleted without appreciable reduction in sensitivity and specificity. The IQCODE (1) can be shortened to 17 items, (2) had good cross-cultural applicability, and (3) was better than the MMSE-CE as a screening tool for dementia in a population with large variation in educational backgrounds.
NEUROLOGY 1995;45: 92-96
Synopsis
Data from four studies were used to assess the psychometric properties of the 26 IQCODE items. The items were assessed in terms of item–total correlations, test–retest reliabilities, correlations with indicators of current cognitive functioning and correlations with indicators of pre-morbid cognitive functioning. These data were used to develop a 16-item short form. The short form was cross-validated in a new sample using dementia/delirium diagnosis as the validity standard. It was found to perform as well as the long form.
We assessed the prevalence of Parkinson's disease (PD) in a general elderly population in the Netherlands.The study formed part of the Rotterdam Study, a population-based door-to-door study, and included 6,969 persons 55 years of age or older living in a suburb of Rotterdam, the Netherlands. All participants were examined, and those who either had at least one possible cardinal sign of parkinsonism at the neurologic screening, reported that they had PD, or were taking antiparkinsonian drugs were invited for further evaluation. The prevalence of PD in this population was 1.4% (1.2% for men, 1.5% for women). Prevalence increased with age, and prevalence figures were 0.3% for those aged 55 to 64 years, 1.0% for those 65 to 74, 3.1% for those 75 to 84, and 4.3% for those 85 to 94. The corresponding age-specific figures for men were 0.4%, 1.2%, 2.7%, and 3.0%, and for women, 0.2%, 0.8%, 3.4%, and 4.8%. Among 95- to 99-year-old women the prevalence was 5.0%. Twelve percent of the subjects with PD were detected through the screening and had not been diagnosed previously.
NEUROLOGY 1995;45: 2143-2146
In epidemiologic research, logistic regression is often used to estimate the odds of some outcome of interest as a function of predictors. However, in some datasets, the outcome of interest is measured with imperfect sensitivity and specificity. It is well known that the misclassification induced by such an imperfect diagnostic test will lead to biased estimates of the odds ratios and their variances. In this paper, the authors show that when the sensitivity and specificity of a diagnostic test are known, it is straightforward to incorporate this information into the fitting of logistic regression models. An EM algorithm that produces unbiased estimates of the odds ratios and their variances is described. The resulting odds ratio estimates tend to be farther from the null but have greater variance than estimates found by ignoring the imperfections of the test. The method can be extended to the situation where the sensitivity and specificity differ for different study subjects, i.e., nondifferential misclassification. The method is useful even when the sensitivity and specificity are not known, as a way to see the degree to which various assumptions about sensitivity and specificity affect one's estimates. The method can also be used to estimate sensitivity and specificity under certain assumptions or when a validation subsample is available. Several examples are provided to compare the results of this method with those obtained by standard logistic regression. A SAS macro that implements the method is available on the World Wide Web at http:@som1.ab.umd.edu/Epidemiology/software.h tml.
To carry out a meta-analysis of the age-specific incidence of all dementias, including AD and vascular dementia.
Several meta-analyses have been carried out on dementia prevalence, but none on its incidence.
We used loess-curve fitting to analyze data from 23 published studies reporting age-specific incidence data.
The incidence of both dementia and AD rose exponentially up to the age of 90 years, with no sign of leveling off. The incidence rates for vascular dementia varied greatly from study to study, but the trend was also for an exponential rise with age. There was no sex difference in dementia incidence (p = 0.21), but women tended to have a higher incidence of AD in very old age, and men tended to have a higher incidence of vascular dementia at younger ages. East Asian countries had a lower incidence of dementia than Europe (p = 0.0004), and also tended to have a lower incidence of AD.
The incidence of dementia rises exponentially to the age of 90 years. Any sex differences are small, and incidence is lower in East Asia than in Europe.
A methodological study was conducted to examine the effect of extending a frequently used simple multiattribute health-status classification system by adding a cognitive dimension. The EQ-5D questionnaire is a generic instrument to value health, developed by the EuroQol Group. The EQ-5D defines health according to five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. We defined 18 different health states according to the standard EQ-5D classification. A second set of health states was constructed similar to the first, except for the addition of a cognitive dimension (EQ-5D+C). Valuations of both sets of health states were statistically analyzed to detect the effect of the additional dimension. The cognitive dimension generated systematically different values compared with the standard EQ-5D version, whereas the content validity improved. Both systems evoked equally reliable values. Analyses showed that a simple additive model to predict summary values for health states was not optimal for both systems. Although there is a current lack of consensus regarding the domains that are selected to represent health status, this study has shown the importance of considering the inclusion of a cognitive domain.
Less than one-tenth of all population-based research into dementia is directed towards the two-thirds or more of cases living in developing parts of the world. The 10/66 Dementia Research Group has been formed to redress this imbalance, encouraging active research collaboration between centres in different developing countries and between developed and developing countries. The 10/66 group consisted initially of researchers attending a symposium on dementia research in developing countries, held at the 1998 Alzheimer's Disease International conference. They noted a growing interest in this area, with many active researchers and others wishing to start new studies. There was felt to be an urgent need for more research: quantifying prevalence and incidence, exploring regional variations in international collaborations using harmonized methodologies, describing care arrangements for people with dementia, quantifying the impact on caregivers and evaluating the effectiveness of any newly implemented services. Methodological problems need to be addressed, particularly development of culture- and education-fair dementia diagnostic procedures. Good-quality research can generate awareness, pioneer service development and influence policy.
To estimate the incidence and prevalence of dementia, Alzheimer's disease (AD), and vascular dementia (VaD) in the Cardiovascular Health Study (CHS) cohort.
Longitudinal cohort study using prospectively and retrospectively collected data to evaluate dementia.
Four U.S. communities.
There were 3,602 CHS participants, including 2,865 white and 492 African-American participants free of dementia, who completed a cranial magnetic resonance image between 1992 and 1994 and were followed for an average of 5.4 years.
Dementia was classified by neurologist/psychiatrist committee review using neuropsychological tests, neurological examinations, medical records, physician questionnaires, and proxy/informant interviews. Demographics and apolipoprotein E (APOE) genotype were collected at baseline. Incidence by type of dementia was determined using National Institute of Neurological and Communicative Disorders and Stroke-Alzheimer's Disease and Related Disorders Association criteria for AD and Alzheimer's Disease Diagnostic and Treatment Center's State of California criteria for VaD.
Classification resulted in 227 persons with prevalent dementia at entry into the study and 480 incident cases during follow-up. Incidence rates of dementia scaled to age 80 were 34.7 per 1,000 person-years for white women, 35.3 for white men, 58.8 for African-American women, and 53.0 for African-American men. Sex differences were not significant within race. Adjusted for age and education, racial differences were only of borderline significance and may have been influenced by ascertainment methodology. Rates differed substantially by educational attainment but were only significant for whites. Those with the APOE epsilon4 allele had an incidence rate at age 80 of 56.4, compared with 29.6 for those without this allele (P<.001). In whites, type-specific incidence at age 80 was 19.2 for AD versus 14.6 for VaD. These rates were 34.7 and 27.2 for African Americans. At termination of observation, women had only a slightly higher prevalence of dementia (16.0%) than men (14.7%).
Sex and racial differences were not found, and VaD was higher than reported in other studies. These data provide new estimates of dementia incidence in a community sample for projection of future burden.
Western societies host increasing number of elderly labour migrants from Turkey and Morocco. The article studied the prevalence of clinically significant depressive symptoms among elderly Turkish and Moroccan migrants compared with native Dutch elderly and if differences in prevalence rates were explained by known risk factors for depression and/or ethnic, migration-related factors.
330 Turkish, 299 Moroccan, and 304 Dutch elderly (55-74 years) were interviewed (cross-sectionally) using the Center for Epidemiologic Depression Scale (CES-D). Potential risk factors included sex, income level, marital status, ethnic origin, chronic physical illnesses, limitations in daily functioning, migration and acculturation questions.
The prevalence of self-reported depressive symptoms (CES-D>or=16) was very high in elderly migrants, 33.6% for Moroccan and 61.5% for Turkish elderly. The prevalence of depressive symptoms in the native Dutch sample was similar to earlier studies in the Netherlands and abroad: 14.5%. Among migrants education and income level was very low and they had a high number of physical limitations and chronic medical illnesses. This only explained part of the ethnic differences found. In all three samples, depressive symptoms were associated with sex, chronic physical illness and physical limitations. In multivariate analysis, ethnic origin was uniquely associated with the presence of clinically significant depressive symptoms. Only a small number of remigration and acculturation items were associated with depressive symptoms in bivariate analysis.
The prevalence of clinically significant depressive symptoms among elderly migrants from Turkey and Morocco in the Netherlands is very high. Ethnicity was a strong independent risk factor.
The aim of this study is to determine the prevalence of and risk factors of dementia in the elderly with a low socio-economical status. The study is a cross-sectional and analytic study. Two hundred and four persons aged 65 years and above were selected by using the cluster sampling method. The presence of dementia was determined by Standardized Mini Mental State Examination (SMMSE). Twenty-three and 18 cut-off points were accepted as the existence of dementia in educated and uneducated older individuals, respectively. Chi-square test, Student's t-test, and logistic regression analysis were used for data analysis. The mean age of older subjects was 70.8+/-6.45 (S.D.); 71.5+/-5.9 in males and 70.3+/-6.8 in females (p=0.19). Ninety-one percent of older people had never attended school, 54.6% were living below the poverty level, and 97% of the residences were in squatter settlements. Dementia was determined in 46 older subjects (22.9%). Dementia was found significantly higher in females, in elderly subjects aged 80 years and above, in older subjects who were in a bad or very bad self-health status and in those who had a chronic disease, did not have any occupation, had a lower monthly income, and with a depressive score eight and above (p<0.05). In our study, the prevalence of dementia in older people was higher, in agreement with many reported studies. We assumed that this was due to the fact that the ratio of the uneducated, poor, and advanced aged subjects in this study was considerably higher. The different prevalence rates in studies demonstrate that the adoption of SMMSE for the study population, the validity-reliability analyses of tests and the standardization of diagnostic criteria are necessary.
Researchers on genetic and environmental influences on risk for Alzheimer's disease must be prepared for the growing ethnic and racial diversity of our participants. Within the investigation, years of education has typically served as a proxy for cognitive reserve, which may be one factor in influencing risk of cognitive decline among aging people. However, among ethnic minorities, years of education is a poor reflection of the value of educational experience and native ability. This study was conducted among 1002 ethnically diverse English-speaking residents of Northern Manhattan who were cognitively and functionally normal at a baseline evaluation. We found that literacy level was a better predictor of decline in memory, executive function, and language skills than was years of education. The results of this study suggest that in an ethnically diverse cohort, literacy level should be considered as a mediator of the interactions of biological and environmental factors on cognitive decline.
100 years after the first description, Alzheimer's disease is one of the most disabling and burdensome health conditions worldwide. We used the Delphi consensus method to determine dementia prevalence for each world region.
12 international experts were provided with a systematic review of published studies on dementia and were asked to provide prevalence estimates for every WHO world region, for men and women combined, in 5-year age bands from 60 to 84 years, and for those aged 85 years and older. UN population estimates and projections were used to estimate numbers of people with dementia in 2001, 2020, and 2040. We estimated incidence rates from prevalence, remission, and mortality.
Evidence from well-planned, representative epidemiological surveys is scarce in many regions. We estimate that 24.3 million people have dementia today, with 4.6 million new cases of dementia every year (one new case every 7 seconds). The number of people affected will double every 20 years to 81.1 million by 2040. Most people with dementia live in developing countries (60% in 2001, rising to 71% by 2040). Rates of increase are not uniform; numbers in developed countries are forecast to increase by 100% between 2001 and 2040, but by more than 300% in India, China, and their south Asian and western Pacific neighbours.
We believe that the detailed estimates in this paper constitute the best currently available basis for policymaking, planning, and allocation of health and welfare resources.
Origin and settlement of the first generation of Moroccans in the Netherlands [Herkomst en vestiging van de eerste generatie Marokkanen in Nederland] Bevolkingstrends
- Fokkema T
- Harmsen C
- Nicolaas H
Cross-Cultural Dementia Screening (CCD). Manual. [Cross-Culturele Dementiescreening (CCD). Handleiding.]
- Goudsmit M
- Parlevliet J
- van Campen J
- Schmand B
The Halstead-Reitan Neuropsychological Test Battery. Theory and Clinical Interpretation
- R M Reitan
- D Wolfson
Reitan RM, Wolfson D. 1985. The Halstead-Reitan Neuropsychological Test
Battery. Theory and Clinical Interpretation. Neuropsychology Press: Tuscon,
Arizona, USA.
Cross-Cultural Dementia Screening (CCD): a screening instrument for dementia in loweducated and illiterate elderly migrants
- M Goudsmit
- O Uysal-Bozkir
- J Parlevliet
- J Van Campen
- B Schmand
Goudsmit M, Uysal-Bozkir O, Parlevliet J, van Campen J, Schmand B. 2014b. Cross-Cultural Dementia Screening (CCD): a screening instrument for dementia in loweducated and illiterate elderly migrants. in review.