THE MEANINGS OF TRUST IN AFRICAN AMERICAN COMMUNITIES AND THEIR ASSOCIATION WITH PARTICIPATION IN DEMENTIA RESEARCH

Abstract African American /Black American older adults’ low participation in research reduces the generalizability of research findings and hinders understanding of dementia mechanisms, further widening health disparities. Both the Alzheimer’s Association and the National Institutes of Health have identified recruitment of African Americans with cognitive impairment into dementia research as an area of high priority. Distrust of research and medical institutions is often cited as a barrier to participation of African Americans in dementia research. Therefore, the goal of this study is to better understand African American community members’ expectations associated with trust. We used focus groups and semi-structured interviews to examine the expectations associated with overall trust. We conducted 6 focus groups: 4 with African American older adults and 2 with caregivers of African American older adults with cognitive impairment. We also interviewed 5 African American older adults with cognitive impairment (total n=59). Data were analyzed with content analysis. Five themes emerged: 1) Importance of providing truthful help/information leading to trust; 2) Long relationships leading to trust; 3) Acting efficiently and consistently (e.g., “not fooling around”) leading to trust; 4) Transference of trust (e.g., I can likely trust someone trusted by a trusted person); 5) Difficult to trust because of a harsh social environment. To conclude, trust is a complex belief associated with multiple expectations and relationships. It is critical that researchers understand these expectations related to trust in order to increase recruitment of African American older adults into dementia research

THE MEANINGS OF TRUST IN AFRICAN AMERICAN COMMUNITIES AND THEIR ASSOCIATION WITH PARTICIPATION IN DEMENTIA RESEARCH

Abstract African American /Black American older adults’ low participation in research reduces the generalizability of research findings and hinders understanding of dementia mechanisms, further widening health disparities. Both the Alzheimer’s Association and the National Institutes of Health have identified recruitment of African Americans with cognitive impairment into dementia research as an area of high priority. Distrust of research and medical institutions is often cited as a barrier to participation of African Americans in dementia research. Therefore, the goal of this study is to better understand African American community members’ expectations associated with trust. We used focus groups and semi-structured interviews to examine the expectations associated with overall trust. We conducted 6 focus groups: 4 with African American older adults and 2 with caregivers of African American older adults with cognitive impairment. We also interviewed 5 African American older adults with cognitive impairment (total n=59). Data were analyzed with content analysis. Five themes emerged: 1) Importance of providing truthful help/information leading to trust; 2) Long relationships leading to trust; 3) Acting efficiently and consistently (e.g., “not fooling around”) leading to trust; 4) Transference of trust (e.g., I can likely trust someone trusted by a trusted person); 5) Difficult to trust because of a harsh social environment. To conclude, trust is a complex belief associated with multiple expectations and relationships. It is critical that researchers understand these expectations related to trust in order to increase recruitment of African American older adults into dementia research

Launching the Living Alone With Cognitive Impairment (LACI) Project: Bridging Research and Policy

Abstract: The Living Alone with Cognitive Impairment (LACI) Project bridges research and policy to develop policy recommendations to address the needs of people living alone with cognitive impairment (PLACI) through new expansions of long-term services and supports. There are an estimated 4.3 million PLACI in the United States. Access to formal LTSS is critical to them because they lack cohabitants to assist with activities of daily living and navigating LTSS, especially during the COVID-19 pandemic. To bridge research with policy, seventeen Policy Advisory Group (PAG) members were recruited, including representatives from state and local government, and LTSS policy experts. Between November 2020-January 2021, a total of 17 individual meetings were conducted with PAG members and one webinar convening of the group. The PAG identified preliminary recommendations in three areas, including: 1) important areas of inquiry for qualitative and quantitative research, 2) best practices for addressing equity across diverse racial/ethnic minority groups, and 3) preliminary policy recommendations that leverage existing innovations. The LACI Project team is actively incorporating the PAG feedback by: a) modifying research questions for the quantitative and qualitative research, b) convening a diverse Community Advisory Group, and c) crafting preliminary policy recommendations based on PAG input. To conclude, engaging the expertise of the PAG to develop policy recommendations to increase LTSS for PLACI is a promising method of bridging research and policy. The engagement of policy experts ensures that fore-coming research is designed to address the most important policy gaps and all policy recommendations are actionable and timely

Earning the Trust of African American Communities to Increase Representation in Dementia Research

Abstract: Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to a legacy of racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research

Factors Related to COVID-19 Vaccine Uptake in Black American Communities

Abstract: Black/African Americans represent 13% of the population, yet account for more than 24% of COVID-19 deaths. Emerging evidence indicates that Black Americans are receiving COVID-19 vaccines at lower rates than whites. However, there is minimal information about why vaccination rates are lower. To address this gap, we examined the effects of the COVID-19 pandemic among Black Americans, with an emphasis on understanding trust and vaccine uptake. Data were collected between July and September 2020 using 8 virtual focus groups in Detroit, MI and San Francisco Bay Area, CA with 33 older Black Americans and 11 caregivers of older Black Americans with cognitive impairment. Inductive/deductive content analysis was used to identify themes. The first theme pointed to a sense of feeling abandoned by healthcare providers and the government at local and state levels, which exacerbated uncertainty and fear about the vaccine and in general. The second theme emphasized a sense of deep distrust towards healthcare providers and the government, especially during the pandemic. The third theme pointed to a reluctance in receiving the vaccine because of distrust of pharmaceutical companies and the government, as well as misinformation and the rapid speed of vaccine development. These findings suggest that underlying systemic issues need to be addressed immediately to accelerate vaccine uptake among older Black Americans. New initiatives are needed to foster trust and address abandonment by healthcare and government systems. In addition, public health campaigns with reliable information about the COVID-19 vaccine are needed

Factors Related to COVID-19 Vaccine Uptake in Black American Communities

Abstract: Black/African Americans represent 13% of the population, yet account for about a quarter of COVID-19 deaths. Black Americans receive COVID-19 vaccines at lower rates than whites. To address this gap, we examined effects of the COVID-19 pandemic among Black Americans, emphasizing understanding trust and vaccines. Data were collected (July to September 2020) using 8 virtual focus groups in Detroit and San Francisco with 33 older Black Americans and 11 caregivers. Content analysis was used to identify themes. The first theme pointed to a sense of feeling abandoned by healthcare providers and the government, which exacerbated uncertainty and fear. The second theme emphasized distrust towards healthcare providers and government. The third theme pointed to a reluctance in receiving the vaccine because of distrust of pharmaceutical companies and government, as well as misinformation. These findings suggest that underlying systemic issues need to be addressed to accelerate vaccine uptake among older Black Americans

Effects of COVID-19 Pandemic on the Lived Experience of Diverse Older Adults Living Alone With Cognitive Impairment

Abstract: Background and Objectives: Even before the COVID-19 pandemic, older adults with cognitive impairment living alone (an estimated 4,3 million individuals in the United States) were at high risk for negative health outcomes. There is an urgent need to learn how this population is managing during the pandemic. Research Design and Methods: This is a qualitative study of 24 adults aged 55 and over living alone with cognitive impairment from diverse racial/ethnic backgrounds. Participants’ lived experiences during the pandemic were elicited via 59 ethnographic interviews conducted over the phone either in English, Spanish, or Cantonese. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes. Results: Qualitative analysis of transcripts revealed five themes: 1) fear generated by the pandemic; 2) distress stemming from feeling extremely isolated; 3) belief in misinformation, 4) strategies for coping during the pandemic; and 5) the importance of access to essential services. Discussion and Implications: This pandemic put a spotlight on the precarity and unmet needs of older adults living alone with cognitive impairment living. Findings underscore the need to expand access to home care aides and mental health services for this population

The Living Alone with Cognitive Impairment (LACI) project: Bridging research and policy to expand long‐term services and supports

Abstract: Background: There are an estimated 4.3 million people living alone with cognitive impairment (PLACI) in the United States. The COVID‐19 pandemic and the isolation incurred by shelter‐in‐place has likely exacerbated cognitive impairment in older adults who live alone. Access to formal long‐term services and supports (LTSS) is critical to this population because they lack cohabitants to assist with activities of daily living and navigating LTSS. The Living Alone with Cognitive Impairment (LACI) Project seeks to bridge research and policy to develop actionable and timely policy recommendations to address the needs of PLACI through new expansions of LTSS. Method: Seventeen Policy Advisory Group (PAG) members were recruited, including representatives from state and local government, dementia and aging advocacy organizations, LTSS providers, and LTSS policy experts. A total of 17 individual meetings were conducted with PAG members and one webinar convening of the group. Result: The PAG identified preliminary recommendations in three areas, including: 1) important areas of inquiry for qualitative and quantitative research to address the needs of PLACI, 2) best practices for addressing equity across diverse racial/ethnic minority groups, and 3) preliminary policy recommendations that leverage existing innovations at the state and federal level. The LACI Project team is actively incorporating the PAG feedback by: a) modifying research questions for the quantitative and qualitative research, b) convening a Community Advisory Group to ensure that the research is guided by diverse community members, and c) crafting preliminary policy recommendations based on PAG input. Conclusion: Engaging the expertise of an advisory group to develop policy recommendations to increase LTSS for PLACI is a promising method of bridging research and policy. The engagement of policy experts ensures by ensuring that research is designed to address the most important policy gaps and all policy recommendations are actionable and timely

Factors related to COVID-19 vaccine intention in Latino communities.

ObjectiveTo examine the effects of the COVID-19 pandemic among Latino communities, with an emphasis on understanding barriers and facilitators to vaccine intention prior to the development of the vaccine.MethodsQualitative data were collected between April and June 2020 from 3 focus groups with Latino adults (n = 21) and interviews with administrators of community-based organizations serving Latino communities (n = 12) in urban (Los Angeles) and rural (Fresno) California, supplemented by Community Advisory Board input in May 2021to elucidate the findings. Data were analyzed with deductive content analysis.ResultsWe have identified four main themes that are barriers to vaccinating against COVID-19: 1) concerns about accessing appropriate healthcare services, 2) financial issues and 3) immigration matters, as well as 4) misinformation.ConclusionsFindings illustrate the pervasive role of addressable social determinants of health in the intention of rural and urban Latino communities in being vaccinated, which is a pressing public health issue. Policy implications: Findings provide evidence for a systemic shift to prioritize equitable access to COVID-19 vaccines to Latino communities