2022-2023 BMBH Scholar Project Titles and Proposals

 

Roy McReynolds

Title A: Genetic risk factors & health disparities research: A state of the science

Title B: The Silent Epidemic: A review of genetic risk factors in African Americans

Alzheimer’s disease (AD) is the leading cause of dementia, affecting approximately 50 million individuals worldwide. Growing evidence points to non-Caucasian populations being at increased risk for Alzheimer’s disease, with African Americans having the highest risk. Despite this increased risk for developing the disease, the number of specific and focused genetic studies investigating risk factors in non-European populations has only begun to expand in the last 10 years. The goal of these studies is to identify previously unknown genetic risk factors that could be the underlying reason for the increased risk in these populations. One salient genetic risk factor that has been identified in these studies, is the gene that encodes the ATP-binding cassette transporter (ABCA7) protein. Genetic variation in this gene doubled the risk for African Americans specifically, and the molecular implications of dysfunction in this gene in relation to the onset and progression of Alzheimer’s disease remains understudied. The primary aim of this project is to survey the landscape of research being conducted regarding risk factors in African Americans. The others aims of this project are to provide an overview of additional identified genetic risk factors for AD and to begin to explore molecular consequences of these genetic risk factors for the pathogenesis of Alzheimer’s disease. I will use published articles and their available data sets to identify genetic risk factors found to increase African Americans risk for AD. I will identify the function of the top 10 risk factor genes and conduct gene ontology to identify the processes that are most affected by dysfunction in these genes. Finally, I will identify organ tissues and specific cell types where these genes are highly expressed to begin to identify cellular and molecular processes disrupted by variants of these genetic risk factors. Identifying additional genetic risk factors in the populations of people that are most at risk for developing Alzheimer’s disease will allow scientists to further expand research efforts into understanding the cellular and molecular causes of Alzheimer’s disease. This expanded molecular research combined with Increase enrollment in clinical trials for patients from more diverse populations will ultimately lead to a better understanding of Alzheimer’s disease risk and treatment. Ultimately this feed forward loop of increased research into non-Caucasian populations risk factors and increased recruitment of more diverse clinical trial participants, should lead to increased access to treatments for Alzheimer’s disease and increased assurance that available treatments will be effective in broader sets of racial and ethnic backgrounds.

Potential Figures

  1. Graphic that shows the number of people with AD

  2. figure that shows the increased risk that African Americans have for developing AD

  3. Figure explaining what a GWAS study is & how they are generally conducted

  4. Tissues where the genes are implicated

  5. Gene ontology of identified genes

 

Breton Asken

Title: How Does Lifetime Head Trauma Exposure Relate to Social Determinants of Health Among Older Black Males?

The plan is to collect the new UDSv4 Social Determinants of Health variables along with detailed head trauma exposure histories from Black men who are either currently enrolled or will be enrolled in research projects through UCSF's ADRC (in collaboration with Charles Windon, UCSF neurologist). As you might imagine, the N is not large, and I will be exploring whether we can expand the effort to the 1Florida ADRC, which includes targeted recruitment of Black participants at the Miami site. Ideally, we will also be able to offer participants the opportunity to enroll in the BMBH Registry.

 

Willie McBride

Title: Development of an Alzheimer’s Disease Education Model Using a Community-Based Participatory Research Framework to Increase Black Men Receiving Neuropsychology Services

  1. SPECIFIC AIMS

Alzheimer’s disease and related dementias (ADRD) are disorders characterized by declines in memory, language, problem-solving and other cognitive abilities that impact a person’s capacity to carry out activities of daily routine [1]. These disorders are debilitating for the individual but have deleterious effects on the lives of their families/caregivers, communities, and health-care systems as well. Alzheimer’s disease (AD) is the sixth leading cause of death in the United States and fifth leading cause of death among adults age 65 and older [2]. In 2017, an estimated 6.1 million people had clinical AD or mild cognitive impairment and that number is expected to more than double by 2060 [3]. Within this context, the number of people of old age (i.e. 65 and older) in 2019 was 54.1 million and that number is expected to increase to approximately 95 million by 2060 accounting for 23 percent of the total US population [4-5]. Therefore, the burden of AD on society is likely to increase as more people transition into older age. Furthermore, the proportion of US racial/ethnic minorities over the age of 65 is expected to increase to 42% of all older adults over this timeframe as well [6, 7]. As such, ADRD appears to impact racial/ethnic minorities disproportionately more than white people [8-12]. Within the context of ADRD and race, black people have the highest risk as compared to other racial groups and are 1.5 to 2 as likely to develop AD as compared to White individuals [13 -16]. Factors thought to contribute to this risk disparity in black people include higher prevalence of diabetes, hypertension, cancer, and vascular disease which are known to have a harmful impact on overall brain health and predisposes them to a greater risk for cognitive decline [17-20]. African American men, particularly, have worse health outcomes than that of nearly all other groups in the United States and are likely to die younger than US women of all races and all other groups of men, except Native Americans [21-23]. While homicide is a unique contributor to mortality rates in African American men, Alzheimer’s disease and related dementias (ADRD), interestingly, is a leading cause of mortality in all other men groups and black women but not black men [24].  While it’s likely that the life expectancy of African American men may influence the prevalence of ADRD, this is an area that needs further exploration and research.

 

Earlier detection of ADRD is critically important as treatment and prognostic outcomes vary significantly based on time of detection. Unsurprising, African Americans are more likely to receive delayed ADRD diagnoses and face heightened barriers to accessing ADRD care despite higher prevalence rates [25-29]. They also are more likely to present with more severe clinical presentations demonstrating higher rates of cognitive impairment and neuropsychiatric symptoms [30].  As such, neuropsychological screening and comprehensive evaluations represent useful tools to aid in disease detection, diagnostic clarification, detail of strengths and weaknesses, and treatment services that would be extremely beneficial for African Americans with concerns for cognitive decline and ADRD. While the need for these services in African American communities seems apparent, there appears to be significant underutilization of these services by individuals of this community. Particularly for older African American men, they generally utilize health care resources at much lower rates than many other groups [22]. It has been opined that awareness of neuropsychological services and utility, limited number of neuropsychologists (including those who come from their own community) at medical facilities frequented by them, evaluation cost, and fewer referrals from their physicians are key factors that could explain decreased usage rates among older African American men [31]. Add in cultural mistrust as an additional blockade that may prevent older African American men from accessing these services [32]. Increasing awareness by providing psychoeducation around ADRD and neuropsychology services through partnering with local community organizations that serve older African American men could be a viable method for improving their neuropsychology utilization rates which could impact ADRD treatment and prognostic outcomes [33]. A number of studies have devoted resources to developing culturally-tailored educational strategies targeting Hispanic communities around ADRD, however, there is minimal literature on culturally tailored educational strategies focused specifically on educating African Americans about ADRD [34-36]. Community based participatory research (CBPR) represents an approach that could achieve this task [37]. The proposed research will collect quantitative and qualitative data on older African American men’s awareness of ADRD and neuropsychology services through psychoeducational didactics to determine how to better engage these communities and increase their utilization of neuropsychology services.

 

 

AIM 1: Examine older African American men’s knowledge of ADRD and neuropsychology services to determine if targeted educational didactics, adapted from ADRD topics focused on Hispanic communities, apply to African American men and increase their likelihood to utilize neuropsychology services. We will be conducting multiple culturally tailored ADRD education events, adapted from Hispanic community ADRD interventions, with African American men at local community organizations to determine if the same intervention focused on Hispanic communities applies to black communities as far as increasing their awareness of ADRD and neuropsychology services along with factors that would impact their willingness to utilize these services. A minimum of 100 participants will receive a pre-post survey to assess ADRD and neuropsychology knowledge and to assess their attitudes towards pursuing a neuropsychological evaluation in the future. Participants who agree to partake in the survey will be offered the opportunity to receive a cognitive screening evaluation and/or neuropsychological evaluation after completion of the survey. Men who agree to the cognitive screening evaluation will be referred to counselors knowledgeable about brain health to review the results and help them to determine their next steps regardless of their performance on the screening measure. Counselors will collect biopsychosocial information and information about their cognitive functioning to help inform these decisions. We will explore the men’s experiences further by conducting qualitative interviews with 5 men who receive the evaluations and 5 men who did not.

 

AIM 2: Examine barriers that impact participation in neuropsychological evaluations in order to inform the development of strategies for reducing barriers and promoting neuropsychology services use among a community sample. We will be giving the educational didactics to 20-30 African American men community stakeholders. They will be administered the same pre-post survey about ADRD knowledge and neuropsychology. We will also conduct qualitative surveys to provide information about the usefulness of the Hispanic community focused ADRD interventions and to identify barriers that may impact their willingness to pursue an evaluation. The findings from this novel research will be used to develop an educational approach for the promotion of neuropsychology services in older African American men.

 

B. SIGNIFICANCE

The detection of ADRD is improved when neuropsychological evaluations are included in the ADRD evaluation process. Neuropsychological evaluations provide detailed assessments of cognitive, emotional, and behavioral functioning that often cannot be obtained through other diagnostic means. Family physicians are typically the first health care professionals to see clients and evaluate individuals with cognitive dysfunction [38], and while some cases of ADRD are easier to detect and diagnose, others present challenges that warrant specialty care including neuropsychological evaluations. When providers do refer patients for neuropsychological evaluations, they often report extremely high satisfaction with the answers to the referral question and agreement with diagnostic impressions and treatment recommendations offered [38]. The guidelines from several organizations stress the importance of neuropsychological evaluations in the diagnosis and treatment of ADRD including American Academy of Neurology, the  National Institute on Aging–Alzheimer's Association Workgroup, The European Federation of Neurologic Societies–European Neurologic Society, along with the  International Statistical Classification of Mental and Behavioural Disorders, 10th rev., and the Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Manuals [39-42].

Despite the increased risk for developing ADRD in African American communities, and the evidence for the benefits of a neuropsychological evaluation, the utilization of these services remains low in African Americans. A number of factors likely contribute to this underutilization including lower education/literacy, higher rates of poverty, and limited access to and/or use of health care services [23]. These factors are increasingly compounded by the fact that neuropsychological evaluations can be extremely expensive and may only be partially or not covered by insurances. African Americans are more likely to be un- or underinsured at far greater rates than non-Hispanic whites [33]. Additionally, the number of African American neuropsychologists practicing is extremely small which further limits individuals who may desire these services but are unable to find a provider of their own background [32, 43]. Furthermore, studies have shown that many neuropsychologists feel that their cultural competence for working with minority communities is limited [32, 43]. Ultimately, these issues further widen the gap between African American communities and the services they may need. This disparity is even more compounded when examining the healthcare utilization rates of African American men. It is vitally important that innovative approaches be identified and developed to help overcome existing barriers that impact the utilization of neuropsychology services in African American men as these methods may also generalize to improving their healthcare utilization in other areas.

 

C. INNOVATION

The proposed study is designed to overcome a number of limitations to the existing body of research on African Americans, but particularly for African American men. First we will explore the impediments and the factors that may facilitate utilization of neuropsychology services among older African American men. The lack of engagement of older African American men with neuropsychology services and other healthcare needs mirrors the lack of black men representation in research and clinical trials. Therefore, it is vital that new and more effective strategies be developed to engage African American men at risk for cognitive decline. Furthermore, there is an absence of knowledge about the attitudes of older African American men with regards to brain health, ADRD, and neuropsychology services. Second, the study uses quantitative and qualitative research to understand the barriers and use this understanding to develop and pilot an education module to promote brain health, ADRD awareness, and increased interest in pursuing neuropsychological evaluations. Finally, as a byproduct of better brain health awareness, older African men will be more likely to engage in healthier lifestyle choices that will improve their overall health.  

 

D. RESEARCH APPROACH

Overview: The planned research will take place as part of a larger project, the Black Men Brain Health Initiative, a Scientific Meeting Grant (R13). The aims of the multidisciplinary conference series are to identify knowledge gaps and future priorities in cognitive reserve, resilience, aging, and AD/ADRD health disparities life course research among Black males; cultivate a culturally competent workforce trained and committed to addressing Black male’s brain health, cognitive aging, and AD/ADRD research; and ultimately build a national research volunteer registry of Black Males. The proposed research will take place in an east south-central regional urban city. For this research we will identify community organization partners that cater to African American men to provide the education session and pilot the study. The timeline, data collection and analysis strategies for each aim are described below.

 

Timeline for Research Activities Timeline for research activities

 

 

 

 

 

 

 

 

Phase 1: Examine older African American men’s knowledge of ADRD and neuropsychology services to inform the development of strategies for promoting neuropsychology services use among a community sample. We will develop a culturally tailored ADRD education module to be delivered to older African American men, based on ADRD interventions tailored towards Hispanic communities [41-43], to assess their awareness of ADRD, neuropsychology services, and if this intervention increases their knowledge and their willingness to engage in cognitive screening and/or neuropsychology evaluations. At least 100 participants will be given a pre and post-survey after the educational presentation. We propose a minimum of 100 survey completions because we felt that as feasible with the time and resources we have for this project, and because we felt like we would achieve completion of our aims with this number of participants. We will purposefully select African American men within an age range. Specifically, we will explore older African American men’s awareness of ADRD and neuropsychology services, if that knowledge increases after the intervention, their willingness to receive an evaluation, and effective strategies to promote ADRD awareness and neuropsychology services: ADRD awareness: A pre- and post-survey 5-point Likert-type scale item we developed assessed subjective ADRD knowledge (1 = very low to 5 = very high-self-rated knowledge) and the 30 item true/false Alzheimer’s Disease Knowledge Scale (ADKS) [45]. The subjective ADRD knowledge item stated, “How would you rate your knowledge of Alzheimer’s disease?” Neuropsychology service awareness: We developed pre–post survey 5-point Likert-type scale questionnaire to assess awareness of neuropsychology services. Neuropsychology service utilization attitudes were assessed by a pre- and postsurvey 5-point Likert-type scale item we developed. Statistical analysis will be used to determine if participation in educational sessions impacts ADRD and neuropsychology awareness, neuropsychology service utilization attitudes.  Participants will have the opportunity to receive a cognitive screening evaluation after the educational intervention. Those who participate in the cognitive screening evaluation will be referred to counselors knowledgeable about brain health to review the results and help them to determine their next steps regardless of their performance on the screening measure. Once participants have received feedback they will be given a brief anonymous self-administered questionnaire asking about their results, perceptions of cognitive screening process, likelihood of receiving a full neuropsychological evaluation, and barriers. Demographic variables and self-reported reasons for/for no cognitive evaluation participation will be analyzed to identify distinguishing factors between both groups.  Neuropsychology service utilization perception and barriers will be assessed qualitatively by asking pre-post survey questions to identify barriers participants feel would impact their willingness to receive an evaluation. Qualitative methods will be used to evaluate responses to these questions for themes.

 

Phase 2: Qualitative analysis of the applicability of the ADRD education intervention focused on Hispanic communities among African American stakeholders. To accomplish our 2nd aim, we will give the adapted ADRD intervention to African American community stake holders to assess the impact of the information session. They will be administered the pre-post survey about ADRD knowledge and neuropsychology. Qualitatively, they will provide feedback about the ADRD intervention and if the same information is sufficient. They will also be asked to identify content that needs to be changed. Qualitative methods will be used to evaluate responses to these questions for themes.

 

 

 

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