In this issue of International Psychogeriatrics, Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) reported according to foregoing publications (Mehta et al., Reference Mehta, Yin, Resendez and Yaffe2005; Poon et al., Reference Poon, Lal, Ford and Braun2009; Zuckerman et al., Reference Zuckerman2008) and with later reports (Lin et al., Reference Lin2021; Olchanski et al., Reference Olchanski2022; Zhu et al., Reference Zhu, Neugroschl, Barnes and Sano2022) that antidementia medication usage in the USA was highest in persons with dementia from a white ethnic background than from minority ethnic groups (MEG). Giebel et al.’s report highlights the impact of social factors on current usage of antidementia medication and analyzes for the first time the difference between young onset dementia (YOD) and late onset dementia (LOD), finding that more people with YOD used more memantine than those with LOD, while fewer used cholinesterase inhibitors.
This article presents us a situation in which several factors interact in a complex way. In the framework of these findings, there are several points related to the ethnic inequity in health and in the disparity in the distribution of dementia treatment. Inequity is generated throughout the life course, having repercussions at all levels in the care chain, from the generation of risk and protective factors along life to final stages of dementia care.
Faison et al. (Reference Faison2007), after consulting several sources, defined ethnicity as a term that refers to sharing a common culture, origin, psychological characteristics, attitudes, language, religion, and cultural traditions. And they mentioned that this term is frequently associated to immigrant status. The population size of elderly from ethnic minority groups is exponentially growing in several low- and middle-income countries (Shah et al., Reference Shah, Doe and Deverill2008). Then dementia, depression, and other mental health problems will increase too (Bhattacharyya and Benbow, Reference Bhattacharyya and Benbow2013). Now, the non-Hispanic whites represent in US three-quarters of older adults. It is estimated that MEG population will increase from 25% to approximately 45% of older adults in the USA by 2040 (ACL, 2021). Alzheimer’s dementia and related disorders (ADRD) prevalence were higher for women than men. Latinos are expected to have the largest increase in dementia cases in the coming years (Aranda et al., Reference Aranda2021). Alzheimer’s Association’s 2021 report (2021) summarized the evidence from almost 10 publications about the fact that minorities such as Hispanics and African Americans have more risk for developing dementia compared to non-Hispanic whites. And mentioned that health, socioeconomic disparities, and systemic racism contribute to increased Alzheimer’s and dementia risk in MEG.
Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) revised national data from a wide period (September 2005 to March 2019) and included three diagnoses: Alzheimer’s disease dementia, Lewy body dementia, and Parkinson’s disease dementia; from the USA, National Alzheimer’s Coordinating Center (Beekly et al., Reference Beekly2007; Morris et al., Reference Morris2006), from 34 Alzheimer’s Disease Centers (ADC). This study, even based on a national registry, remarks the underrepresentation of MEG. Most of the population studied (82.4%) were non-Hispanic whites, and the rest (17.6%) were people from MEG.
People from low and middle-income countries migrate to more developed countries, looking for better opportunities. Although they may have more income, most of them and their descendants will continue living in inequity status in the high-income countries where they are immigrants. If they or their relatives present dementia, they must afford several disadvantageous situations simultaneously:
1. Be part of a minority group because racial, ethnic, and immigrant conditions.
2. Belonging to the aged population group.
3. Suffer dementia, condition linked to stigma.
4. All this situation is even worse for women.
It has been documented that MEG families look for help years after the deterioration started, until the family or the career are collapsed. They believe that families should take care of their elders. This could be associated to health and dementia illiteracy, and their sense of familial responsibility (Mukadam et al., Reference Mukadam, Cooper, Basit and Livingston2011). People living with dementia experiences it differently depending on several conditions such as life and social circumstances, environment, preferences, and economical and social resources (Aranda et al., Reference Aranda2021). There is a lack not only in opportunities for treatment but also an accurate and timely diagnosis. Several reports document that people from MEG have difficulties in receiving a diagnosis and accessing to care services (Giebel et al., Reference Giebel2019; Mayeda et al., Reference Mayeda, Glymour, Quesenberry and Whitmer2016; Nielsen et al., Reference Nielsen, Nielsen and Waldemar2020).
Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) reported that, in some ethnic groups, the possibility of a “changing” diagnosis is more likely than in others. This is perhaps favored for difficulties in accurate communication, which is very necessary for knowing the symptoms and course of the disease. It is important to consider that the cultural component play an important role in the understanding and behaviors related to dementia and it could be very heterogeneous.
Cooper et al. (Reference Cooper, Tandy, Balamurali and Livingston2010) found that MEG attends to medical services later, in advanced stages of the illness, and when they got a diagnosis, they had less options to have access to antidementia medication. The gaps for receiving pharmacological and non-pharmacological treatments are manifestations of health and healthcare inequities. Rates of pharmaceutical antidementia treatment are low and disparate in the Medicare population diagnosed with ADRD. The timing for therapy initiation varies widely across race/ethnicity, suggesting inequities in diagnostic and treatment (Aranda et al., Reference Aranda2021). Evidence shows that postdiagnosis, black and Latino patients are not only less likely to be prescribed medications but are also advised to discontinue antidementia drugs. Even more, there is evidence of an increase in antipsychotic consumption in the Latinos (Aranda et al., Reference Aranda2021). Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) point out that health literacy is an other topic linked to inequity that it may be associated with access to care and use of medications, and it may or may not be independent of socioeconomic status.
Recently, more authors have been studying the mental health neglect among minorities of older adults, a topic that has been documented in specialized journals, such as IPG, for several years (Graham et al., Reference Graham, Howard and Ha1998; Shah et al., Reference Shah, Doe and Deverill2008). Evidence added to that recently published regarding the inequity of care for serious mental illness at the end of life (Shalev and Fields, Reference Shalev and Fields2021).
We know that so far there is no available pharmacologic treatment for avoiding the damage and death of neurons that cause Alzheimer’s disease. Pharmaceutical treatment with the antidementia treatments available (donepezil, galantamine, rivastigmine, and memantine) has modest effectiveness, but may delay the cognitive and functional decline of ADRD. Even when the delays to deterioration could be modest, it is valuable for the affected person and his/her family (Barthold et al., Reference Barthold2020). Nevertheless, we are being witnesses of impressive advances in the understanding and early diagnoses of neurodegenerative disorders, and particularly of Alzheimers disease (AD). In this new era, with the biomarkers and new clinical trials emerging, looking for AD-modifying therapies, these options should be equitably available.
With the numbers of people with ADRD rising rapidly across the world, the scientific community can no longer neglect the need for research focusing on ADRD among underrepresented ethno-racial diverse groups (Babulal et al., Reference Babulal2019). It is imperative that clinical trials for AD include grater minority participants for generating information on possible differences in metabolism, treatment response, adverse events to therapeutic agents, and favors the investigation of genetic variability among ethnic groups. Strategies are urgently needed to accesing of dementia medication and to provide access to social services for people who are facing inequities in dementia care. There are several groups, programs, and proposals oriented to combat inequity, but the results so far are not notorious (Faison et al., Reference Faison2007).
As example, there are some initiatives to provide alternative mental health care for ethnic minorities, these are not sufficiently widespread even in developed countries (Bhattacharyya and Benbow, Reference Bhattacharyya and Benbow2013). The crude scenario faces a complex situation of elderly minorities in low- and middle-income countries. Where the family assumes totally, the responsibility of caring is “before them rather than the services or the government” (Mukadam et al., Reference Mukadam, Cooper, Basit and Livingston2011).
To advance the understanding of ethno-racial factors in ADRD, the field not only needs to directly test the importance of ethno-racial factors but also test these constructs within the context of the “big picture” including, but not limited to, the traditional factors (Stevnsborg et al., Reference Stevnsborg, Jensen-Dahm, Nielsen, Gasse and Waldemar2016). Kenning et al. (Reference Kenning, Daker-White, Blakemore, Panagioti and Waheed2017) suggests that barriers should be addressed on two levels, service-level interventions and personal- or community-level interventions, in conjunction to try and maximize their effectiveness. Further research in terms of the implementation of dual intervention strategies is needed.
The NIA Health Disparities Research Framework recommends responses at multilevel with an approach of life course. Actions and solutions are needed to ensure that the already devastating burden of Alzheimer’s disease and other dementias on disproportionately affected racial and ethnic groups is not made worse by discrimination and health inequities in the current system (AA, 2021). The mentioned organization provides a landscape for stimulating multidisciplinary approaches, evaluating research productivity, and identifying opportunities for health disparities research related to aging that may ultimately achieve health equity (AA, 2022).
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In this issue of International Psychogeriatrics, Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) reported according to foregoing publications (Mehta et al., Reference Mehta, Yin, Resendez and Yaffe2005; Poon et al., Reference Poon, Lal, Ford and Braun2009; Zuckerman et al., Reference Zuckerman2008) and with later reports (Lin et al., Reference Lin2021; Olchanski et al., Reference Olchanski2022; Zhu et al., Reference Zhu, Neugroschl, Barnes and Sano2022) that antidementia medication usage in the USA was highest in persons with dementia from a white ethnic background than from minority ethnic groups (MEG). Giebel et al.’s report highlights the impact of social factors on current usage of antidementia medication and analyzes for the first time the difference between young onset dementia (YOD) and late onset dementia (LOD), finding that more people with YOD used more memantine than those with LOD, while fewer used cholinesterase inhibitors.
This article presents us a situation in which several factors interact in a complex way. In the framework of these findings, there are several points related to the ethnic inequity in health and in the disparity in the distribution of dementia treatment. Inequity is generated throughout the life course, having repercussions at all levels in the care chain, from the generation of risk and protective factors along life to final stages of dementia care.
Faison et al. (Reference Faison2007), after consulting several sources, defined ethnicity as a term that refers to sharing a common culture, origin, psychological characteristics, attitudes, language, religion, and cultural traditions. And they mentioned that this term is frequently associated to immigrant status. The population size of elderly from ethnic minority groups is exponentially growing in several low- and middle-income countries (Shah et al., Reference Shah, Doe and Deverill2008). Then dementia, depression, and other mental health problems will increase too (Bhattacharyya and Benbow, Reference Bhattacharyya and Benbow2013). Now, the non-Hispanic whites represent in US three-quarters of older adults. It is estimated that MEG population will increase from 25% to approximately 45% of older adults in the USA by 2040 (ACL, 2021). Alzheimer’s dementia and related disorders (ADRD) prevalence were higher for women than men. Latinos are expected to have the largest increase in dementia cases in the coming years (Aranda et al., Reference Aranda2021). Alzheimer’s Association’s 2021 report (2021) summarized the evidence from almost 10 publications about the fact that minorities such as Hispanics and African Americans have more risk for developing dementia compared to non-Hispanic whites. And mentioned that health, socioeconomic disparities, and systemic racism contribute to increased Alzheimer’s and dementia risk in MEG.
Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) revised national data from a wide period (September 2005 to March 2019) and included three diagnoses: Alzheimer’s disease dementia, Lewy body dementia, and Parkinson’s disease dementia; from the USA, National Alzheimer’s Coordinating Center (Beekly et al., Reference Beekly2007; Morris et al., Reference Morris2006), from 34 Alzheimer’s Disease Centers (ADC). This study, even based on a national registry, remarks the underrepresentation of MEG. Most of the population studied (82.4%) were non-Hispanic whites, and the rest (17.6%) were people from MEG.
People from low and middle-income countries migrate to more developed countries, looking for better opportunities. Although they may have more income, most of them and their descendants will continue living in inequity status in the high-income countries where they are immigrants. If they or their relatives present dementia, they must afford several disadvantageous situations simultaneously:
1. Be part of a minority group because racial, ethnic, and immigrant conditions.
2. Belonging to the aged population group.
3. Suffer dementia, condition linked to stigma.
4. All this situation is even worse for women.
It has been documented that MEG families look for help years after the deterioration started, until the family or the career are collapsed. They believe that families should take care of their elders. This could be associated to health and dementia illiteracy, and their sense of familial responsibility (Mukadam et al., Reference Mukadam, Cooper, Basit and Livingston2011). People living with dementia experiences it differently depending on several conditions such as life and social circumstances, environment, preferences, and economical and social resources (Aranda et al., Reference Aranda2021). There is a lack not only in opportunities for treatment but also an accurate and timely diagnosis. Several reports document that people from MEG have difficulties in receiving a diagnosis and accessing to care services (Giebel et al., Reference Giebel2019; Mayeda et al., Reference Mayeda, Glymour, Quesenberry and Whitmer2016; Nielsen et al., Reference Nielsen, Nielsen and Waldemar2020).
Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) reported that, in some ethnic groups, the possibility of a “changing” diagnosis is more likely than in others. This is perhaps favored for difficulties in accurate communication, which is very necessary for knowing the symptoms and course of the disease. It is important to consider that the cultural component play an important role in the understanding and behaviors related to dementia and it could be very heterogeneous.
Cooper et al. (Reference Cooper, Tandy, Balamurali and Livingston2010) found that MEG attends to medical services later, in advanced stages of the illness, and when they got a diagnosis, they had less options to have access to antidementia medication. The gaps for receiving pharmacological and non-pharmacological treatments are manifestations of health and healthcare inequities. Rates of pharmaceutical antidementia treatment are low and disparate in the Medicare population diagnosed with ADRD. The timing for therapy initiation varies widely across race/ethnicity, suggesting inequities in diagnostic and treatment (Aranda et al., Reference Aranda2021). Evidence shows that postdiagnosis, black and Latino patients are not only less likely to be prescribed medications but are also advised to discontinue antidementia drugs. Even more, there is evidence of an increase in antipsychotic consumption in the Latinos (Aranda et al., Reference Aranda2021). Giebel et al. (Reference Giebel, Cations, Draper and Komuravelli2020) point out that health literacy is an other topic linked to inequity that it may be associated with access to care and use of medications, and it may or may not be independent of socioeconomic status.
Recently, more authors have been studying the mental health neglect among minorities of older adults, a topic that has been documented in specialized journals, such as IPG, for several years (Graham et al., Reference Graham, Howard and Ha1998; Shah et al., Reference Shah, Doe and Deverill2008). Evidence added to that recently published regarding the inequity of care for serious mental illness at the end of life (Shalev and Fields, Reference Shalev and Fields2021).
We know that so far there is no available pharmacologic treatment for avoiding the damage and death of neurons that cause Alzheimer’s disease. Pharmaceutical treatment with the antidementia treatments available (donepezil, galantamine, rivastigmine, and memantine) has modest effectiveness, but may delay the cognitive and functional decline of ADRD. Even when the delays to deterioration could be modest, it is valuable for the affected person and his/her family (Barthold et al., Reference Barthold2020). Nevertheless, we are being witnesses of impressive advances in the understanding and early diagnoses of neurodegenerative disorders, and particularly of Alzheimers disease (AD). In this new era, with the biomarkers and new clinical trials emerging, looking for AD-modifying therapies, these options should be equitably available.
With the numbers of people with ADRD rising rapidly across the world, the scientific community can no longer neglect the need for research focusing on ADRD among underrepresented ethno-racial diverse groups (Babulal et al., Reference Babulal2019). It is imperative that clinical trials for AD include grater minority participants for generating information on possible differences in metabolism, treatment response, adverse events to therapeutic agents, and favors the investigation of genetic variability among ethnic groups. Strategies are urgently needed to accesing of dementia medication and to provide access to social services for people who are facing inequities in dementia care. There are several groups, programs, and proposals oriented to combat inequity, but the results so far are not notorious (Faison et al., Reference Faison2007).
As example, there are some initiatives to provide alternative mental health care for ethnic minorities, these are not sufficiently widespread even in developed countries (Bhattacharyya and Benbow, Reference Bhattacharyya and Benbow2013). The crude scenario faces a complex situation of elderly minorities in low- and middle-income countries. Where the family assumes totally, the responsibility of caring is “before them rather than the services or the government” (Mukadam et al., Reference Mukadam, Cooper, Basit and Livingston2011).
To advance the understanding of ethno-racial factors in ADRD, the field not only needs to directly test the importance of ethno-racial factors but also test these constructs within the context of the “big picture” including, but not limited to, the traditional factors (Stevnsborg et al., Reference Stevnsborg, Jensen-Dahm, Nielsen, Gasse and Waldemar2016). Kenning et al. (Reference Kenning, Daker-White, Blakemore, Panagioti and Waheed2017) suggests that barriers should be addressed on two levels, service-level interventions and personal- or community-level interventions, in conjunction to try and maximize their effectiveness. Further research in terms of the implementation of dual intervention strategies is needed.
The NIA Health Disparities Research Framework recommends responses at multilevel with an approach of life course. Actions and solutions are needed to ensure that the already devastating burden of Alzheimer’s disease and other dementias on disproportionately affected racial and ethnic groups is not made worse by discrimination and health inequities in the current system (AA, 2021). The mentioned organization provides a landscape for stimulating multidisciplinary approaches, evaluating research productivity, and identifying opportunities for health disparities research related to aging that may ultimately achieve health equity (AA, 2022).
Conflict of interest
None.
Description of authors’ roles
Both authors contributed to conceptualization and writing of this paper.