Adverse social exposome (indexed by national Area Deprivation Index [ADI] 80-100 or ‘high ADI’) is linked to structural inequities and increased risk of Alzheimer’s disease neuropathology. Twenty percent of the US population resides within high ADI areas, predominantly in inner cities, tribal reservations and rural areas. The percentage of brain donors from high ADI areas within the Alzheimer’s Disease Research Center (ADRC) brain bank system is unknown. Determine ADI for brain donors from 21 ADRC sites as part of the on-going Neighborhoods Study. All brain donors in participating ADRC sites with NACC neuropathology data and personal identifiers for ADI linkage (N = 8,637) were included (Figure 1). Geocoded donor addresses were linked to time-concordant ADI percentiles for year of death. Overall, only 5.6% of ADRC brain donors (N = 488) resided in a high ADI (disadvantaged) neighborhood at death. The remaining donors resided in more advantaged neighborhoods, with nearly 40% of donors living in the wealthiest quintile of neighborhoods, and over 300 brain donors originating from the wealthiest 1% of US neighborhoods (Figure 2). Donors from high ADI (disadvantaged) neighborhoods identified as 87% White (n = 424), 11% Black (55), 1% Multiracial (6) and <1% other/unknown race (3), with 1% Hispanic (5). None identified as American Indian/Alaska Native or Native Hawaiian/Pacific Islander/Asian. In comparison, donors from low ADI neighborhoods were 94% White (n = 7680), 3% Black (273), 1% Multiracial (75), <1% American Indian/Alaska Native (11), <1% Native Hawaiian/Pacific Islander/Asian (60), and <1% other/unknown race (50), with 3% Hispanic (230). Sex distribution was similar (54%, 51% female, respectively). Inclusion of high ADI donors varied dramatically across the 21 ADRC brain banks from a low of 0.6% to high of 20% of all a site’s donors (Figure 3). ADI was determined for over 8,600 brain donors in the ADRC system, demonstrating a marked over-representation of donors from very low ADI (extremely wealthy) neighborhoods, in addition to site-to-site variability. This is the first time a comprehensive cross-sectional social exposome assessment of this nature has been performed, opening windows for additional mechanistic study of the social exposome on brain pathology. Life course ADI assessments are on-going.
BACKGROUND AND OBJECTIVES:Two exploratory 6-month pilots of triadic walking with culturally celebratory social reminiscence in gentrifying neighborhoods tested feasibility and health impact among normal and mildly cognitively impaired (MCI) older Black adults. RESEARCH DESIGN AND METHODS:Fourteen triads walked 1-mile 3×/week, using a navigational application with image-based reminiscence prompts. Focus groups evaluated perceived health impact and experience. Primary outcome measures were program evaluations (feasibility), pre-post self-report health, Montreal Cognitive Assessment, blood pressure, and weight. Analysis used mean rank scores for program evaluations, pre-post paired t-tests for health outcomes, and thematic coding for 30 focus groups. RESULTS:Feasibility: Retention was 74% and 86% for pilots, and 100% and 92%, respectively, were "extremely likely" to recommend to friends/family. Mean rank scores indicated appropriate pace and dose, effective conversational prompts, and program readiness with minor changes. Health impact: Self-rated health, mood, activity levels, and energy improved, days feeling downhearted decreased, and days feeling calm/peaceful were maintained or improved. Among Cohort 2, cognitive assessment scores were maintained or improved for 67%; for MCI, 76% had mean improvement of 2.4 (p = .045). Blood pressure and weight decreased for 78% and 44%, respectively. Focus groups: Perceived impact of triadic walking included increased physical and social activity outside the program, increased awareness of cognitive decline risk and personal agency, and deep-seated sense of community connection. DISCUSSION AND IMPLICATIONS:Triadic walking provides structure, accountability, connection, and purpose, motivating sustained engagement. Walking programs that center socialization, particularly within culturally meaningful contexts, may be more effective among older Black adults. CLINICAL TRIAL REGISTRATION NUMBER:NCT05906654; NCT05906667.
Black-Americans continue to experience pervasive health disparities. Factors contributing to increased disease risk include a general mistrust of biomedical institutions among Black Americans. The purpose of this focus group study was to identify, among Black patients who regularly seek care from a primary provider, salient themes regarding barriers to 1) receiving quality primary care; and 2) adhering to medical recommendations. We examined transcripts of eight focus groups held remotely with 29 Black patients (aged 30-60 years) who had established primary care providers. Using grounded theory and an inductive thematic analysis of the transcripts, we identified three themes (belonging, endurance, and resistance) consistent with Black placemaking theory. Our findings suggest that reducing health disparities for Black Americans will require clinical initiatives that emphasize: 1) attention to social influences on health behavior and to features of medical institutions that mark them as White spaces (belonging); 2) recognition of, as well as sensitivity to, community awareness of the systemic and interpersonal barriers to health and safety that many Black adults endure; and 3) reframing avoidant (resistant) behaviors as protective strategies among Black patients. Examining primary care in this way-through the lens of Black placemaking theory-reveals how culturally meaningful approaches to harnessing the specialized knowledge and resilience that clearly exists among many Black communities can improve health care delivery.
The Behavioral Risk Factor Surveillance System (BRFSS) is a randomized national U.S. telephone survey administered by state health departments. This study aimed to identify how Black/African Americans understand BRFSS caregiver and cognitive decline surveys and terminology to inform health messaging that centers the Black/African American experience. In focus groups, BRFSS surveys were administered to Black/African Americans (n = 30) aged ≥ 45 in Oregon. Participants were asked how they interpreted BRFSS terms ‘memory loss’ and ‘confusion,’ how these terms related to Alzheimer’s and dementia, and about caregiving and cognitive decline experiences. The culturally responsive Africana Worldview guided interpretation, which centers the Black/African American experience and individuals within interdependent relationships and community identity when explaining behaviors of people from the African diaspora. BRFSS survey responses differed from focus group responses to the same questions. Two participants reported providing care in the past two years on the survey; in discussions, 21 participants reported providing care in the past two years. Interpretations of BRFSS terminology varied greatly. Differences between age-related cognitive changes, dementia and Alzheimer’s disease were unclear. Cognitive decline was largely understood in terms of identity loss and relationship changes with the affected individual, and how that individual’s relationship changed within community. Caution is advised when using BRFSS data to frame messaging because key cognitive health terms are not universally understood. Messaging that apply the Africana Worldview centralizes relationships and community rather than impact on individual’s day-to-day activities, may be more effective for Black/African Americans and for other groups with different cultural and life experiences.
Academic neurology departments across the country have been rapidly adding diversity, equity, and inclusion (DEI) programs over the past 5-10 years. These programs frequently come with leadership roles that carry a variety of names and responsibilities, such as vice chair of DEI or diversity officer. Furthermore, there are roles for members of the department to be involved with DEI work without being designated the departmental DEI leader. This article provides a framework for understanding the different responsibilities that are typically associated with each of these roles, along with reasonable expectations to associate with the respective job titles. Our goal is to prevent departments from asking too much or expecting too little based on the job title and support provided to the people in these positions. Likewise, we hope to empower DEI leaders who are currently asked to perform duties beyond their scope to obtain the title and support they have earned. For each departmental DEI role, we review prerequisites to success and potential impediments.
IntroductionThe vast majority of studies on aging, cognition, and dementia focus on non-Hispanic white subjects. This paper adds to the extant literature by providing insight into the African American aging experience. Here we describe the study design and baseline characteristics of the African American Dementia and Aging Project (AADAPt) study, which is exploring aging and cognition in African American older adults in Oregon.MethodsAfrican American older adults (n = 177) participated in AADAPt, a longitudinal study that collected data on cognitive, physical, and social functioning in annual visits since 2000.ResultsAADAPt participants had risk factors for developing dementia in future, such as hypertension and hyperlipidemia, but also reported protective factors such as high social engagement.DiscussionThe AADAPt project offers new insights into aging in older African Americans that includes data on cognition, social engagement, and physical health, which are crucial for understanding the experience of under-represented groups and making future studies more inclusive.
Abstract The SHARP-Caregiver (SHARP-CG) study evaluated the feasibility of adapting SHARP to family caregivers of care partners with mild cognitive impairment or early-stage dementia. SHARP-CG assigned 7 triads (n=21) to Group A or B. Triads had a family caregiver (age >40), their care partner (age >40), and a support person (age >18). Caregivers and support persons were healthy or mildly cognitively impaired. Triads walked 1-mile routes with images to prompt conversational reminiscence 3x a week for 16 weeks using the SHARP walking application. Caregivers and care partners contributed weekly health update data, and (optionally) sleep and step-count data. Group A participants walked immediately. Group B participants first completed 16-weeks of observation. Ages were 35-90 (mean 69.8); most were female (52%). Mean Montreal Cognitive Assessment score for caregivers and care partners was 21.7 (SD+4.6). Eighty-six percent (n=6) of caregivers and 71% of care partners (n=5) opted to engage in digital biomarker data collection (actigraphy watch and sleep sensor). Caregivers had greater mean total daily steps (2055; SD+686) than care partners (1684; SD+979). Mean sleep hours were similar for caregivers and care partners at 6.1 (SD+1.1) and 6.5 (SD+2.5). Recruiting caregivers was difficult because many family members did not recognize what they were doing as caregiving. To improve study accessibility for caregivers, adapted eligibility criteria included reducing minimum age, allowing mobility aids, and making some components optional. Increasing accessibility, while improving enrollment, did not necessarily impact adherence. Caregiver demands and sporadic health concerns limited participation.
BACKGROUND:Life-space mobility can be a behavioral indicator of loneliness. This study examined the association between life-space mobility measured with motion sensors and weekly vs. annually reported loneliness. METHODS:Participants were older adults who lived alone. Passive infrared motion sensors were placed in the bathroom, bedroom, kitchen, and living room. Time spent in each room and out-of-home across the day was derived and used as the measure of life-space mobility. Participants reported via weekly questionnaires whether they felt lonely. In annual visits, the UCLA loneliness scale was administered to a subsample (n = 71), and the scores were categorized into high, moderate, and low groups. We used generalized estimating equations (GEE) to correlate life-space mobility with weekly and yearly loneliness. Repeated observations from each individual were bootstrapped for 1000 rounds to associate annual and weekly loneliness measures. RESULTS:We analyzed 4995 weeks of data from 139 participants (age = 78.1 ± 8.6, 74% female, 23% African Americans, 14% with MCI diagnosis). An additional hour in the bedroom in the afternoon was associated with a 21.4% increased odds (OR = 1.214, p = 0.049) of experiencing loneliness in the week. An additional hour out-of-home in the morning and in the afternoon was associated with 18.2% (OR = 0.818, p = 0.040) and 15.3% (OR = 0.847, p = 0.018) fewer odds of experiencing weekly loneliness. In the subsample with annual loneliness assessments, an additional hour out-of-home was associated with 38.1% (OR = 0.619, p = 0.006) fewer odds of being in the high UCLA loneliness group. Compared with the low UCLA group, those with high UCLA scores were five times more likely to report loneliness weekly (OR = 5.260, p = 0.0004). CONCLUSIONS:Frequent and objective measurements of mobility combined with self-reported social wellbeing information can offer new insights into the experience of loneliness and provide opportunities for timely interventions.
Background and Objectives Social isolation is a risk factor for cognitive decline and dementia. We conducted a randomized controlled clinical trial (RCT) of enhanced social interactions, hypothesizing that conversational interactions can stimulate brain functions among socially isolated older adults without dementia. We report topline results of this multisite RCT (Internet-based conversational engagement clinical trial [I-CONECT]; NCT02871921). Research Design and Methods The experimental group received cognitively stimulating semistructured conversations with trained interviewers via internet/webcam 4 times per week for 6 months (induction) and twice per week for an additional 6 months (maintenance). The experimental and control groups both received weekly 10 minutes telephone check-ins. Protocol modifications were required due to the coronavirus disease 2019 pandemic. Results A total of 186 participants were randomized. After the induction period, the experimental group had higher global cognitive test scores (Montreal Cognitive Assessment [primary outcome]; 1.75 points [p = .03]) compared with the control group. After induction, experimental group participants with normal cognition had higher language-based executive function (semantic fluency test [secondary outcome]; 2.56 points [p = .03]). At the end of the maintenance period, the experimental group of mild cognitive impairment subjects had higher encoding function (Craft Story immediate recall test [secondary outcome]; 2.19 points [p = .04]). Measure of emotional well-being improved in both control and experimental groups. Resting-state functional magnetic resonance imaging showed that the experimental group had increased connectivity within the dorsal attention network relative to the control group (p = .02), but the sample size was limited. Discussion and Implications Providing frequent stimulating conversational interactions via the internet could be an effective home-based dementia risk-reduction strategy against social isolation and cognitive decline. Clinical Trials Registration Number NCT02871921
Abstract Accessibility of mental and brain health education remains a challenge for older Black adults, hindered by cultural insensitivities within the field and discriminatory historical context. Operationalizing Black-centered theoretical concepts and narratives from the Sharing History through Active Reminiscence and Photo-imagery (SHARP) study on our website aims to leave older Black adults not only educated but empowered to address cognitive decline and engage in behaviors to mitigate it. Since 2016, 82 SHARP walkers in gentrifying areas of Portland and Seattle have generated over 400 narratives by walking 3x/week for 1, 4, or 6 months and reminiscing together, aided by image prompts about local Black history and culture. Reminiscence is audio recorded for an oral history archive. Transcribed narratives are vetted for content that may compromise participant integrity, then participant-checked. Next, narratives are coded to create a topical index for public users of the archive. SHARP researchers are now operationalizing SHARP theoretical concepts on our website and applying narratives to reach the wider Black public about brain health. The website integrates oral history from walks with tangible, culturally engaging educational content about aging, cognitive decline, and mental health. Asset-based and culturally celebratory messaging, tone, and Black history images counter the often fear- and deficit-based messaging around these topics. Framing Black health within the richness and vitality of Black history, culture, and community resilience, and through memories from other older Black adults taking agency over their health, can inspire learning and action to give readers agency in their mental and brain health.
Mobile methods, including walking interviews, have rarely been used in research with older adults. We compare and contrast two studies that engaged older adults in walking interviews conducted by the coauthors. The first study examined the meaning of food access with residents of publicly-subsidized housing, and the second involved Black Americans in a study of brain health and gentrification. Older adults, including those with physical and mild cognitive impairment, can participate in walking interviews. Key decisions and advice for researchers interested in using mobile methods with this population, including participant safety, comfort abilities, and technology use, are provided.
More nuanced data collection beyond pre/post measures can detect real-time changes in activity levels, sleep, and other factors that may signal transition in cognitive health. Nine Black adults (n = 4 healthy, mean age 71.1; n = 5 mildly cognitively impaired (MCI), mean age 79.2) tested the feasibility of adding digital biomarker technology to the SHARP walking study in Portland, Oregon. Up to 8 weeks, participants wore an actigraphy watch that captured continuous activity data, used an under-the-mattress sensor that captured daily sleep data, and completed online health forms that captured weekly changes. The second 4-8 weeks and in triads, participants walked and conversationally reminisced together on three 1-mile routes/week using the SHARP smartphone application. Means were calculated from group aggregated data (MCI/healthy). Content analysis of group discussions assessed technology acceptability. Watch step data was collected on average 60.4±51.2 days per participant, representing on average 75.0±29.2% of the days step data was collected. Watch sleep data was collected on average 47.6±40.5 days per participant, representing on average 62.5±33.7% of the days sleep data was collected. Under-the-mattress sensor sleep data was collected on average 79.3±42.9 days per participant, representing on average 79.0±24.8% of the days sensor data was collected. MCI participants had lower mean daily step count at 1140 compared to 2570 steps for healthy participants, and lower mean sleep time at 5.07 hours compared to 6.71 hours for healthy participants. MCI had lower mean survey response rates, even with weekly reminders, at 60% compared to 91% for healthy participants, and notably longer mean response times at 472 seconds compared to 195 seconds for healthy participants. Participants generally accepted technology, with caveats: more explanation of technology, better watch step count displays, and watch band options as silicone was uncomfortable in heat and water, prompting discontinuous wear. Using digital biomarker technology for more continuous data capture with older adults including those with MCI is feasible. However, teams should anticipate increased support for MCI participants and potentially longer technology deployment and set-up. More continuous data reveal real-time changes that may signal transitions in cognitive health, allowing for a timelier response from healthcare partners.
Objective:This study describes strategies for the recruitment of socially isolated older old Black individuals to participate in the "Internet-based conversational engagement clinical trial (I-CONECT)" (Clinical Trial.gov: NCT02871921) and lessons learned in this critical population segment.Methods:Best practice strategies to recruit the target population included mass mailings, advertisements, and direct community outreach, including the collaboration with a community group created to reach Black individuals interested in research participation. We also made protocol changes to measure recruitment criteria for older old Black adults more accurately and to increase their participation.Results:Descriptive data related to the challenges and successes in recruiting Black participants compared to the White participants is presented. The primary site contacted 17,523 primarily White potential participants and enrolled/randomized 145 White and 2 Asian/mixed race participants (0.8%). The Midwest site contacted 12,141 Black potential participants and enrolled/randomized 39 (0.3%) participants.Discussion:While best practices were employed, several factors complicated recruitment, including the need to adjust recruitment criteria, navigate regional regulations, and respect diverse community preferences.Conclusion:Older old African Americans are reachable and willing to participate in research when considering their beliefs and practices, influenced by their community and experience.
Abstract Black people are grossly underrepresented in clinical trials, especially in Oregon, where only 2% of the population is Black. The Oregon Alzheimer’s Disease Research Center’s (OADRC) Outreach, Recruitment, and Engagement (ORE) Core aims to correct this disparity by promoting research participation, fostering retention, and supporting quality experiences for Black Oregonians. Essential to this goal has been having an ORE Core that is 50% Black, leaders experienced in Black-centered cognitive health research, and a team that demonstrates commitment to community partnerships. The ORE Core engages a Community Outreach Specialist (COS) whose efforts reflect our Core’s value of “service before sign-up.” The COS differs from a traditional “recruiter” in that the focus is on community relationship-building, rather than recruitment. This can only be supported by first serving the community (e.g., joining community boards, volunteering) before asking community members to sign-up for research. The OADRC promotes research participation by supporting studies that focus exclusively on older Black health. The African American Dementia and Aging Project, supported by a valuable community health partnership, aims to understand lifestyle factors affecting cognitive health. The Sharing History through Active Reminiscence and Photo-imagery Study (SHARP) aims to improve brain health through a culturally celebratory framework centering the Black experience. As a result, SHARP has sustained high retention rates and increased Black participation in Center research. We discuss the role of ORE Cores, the role, values, and reflections of our COS, and examine how Center studies foster sustained community relationships, ultimately for more meaningful engagement within the Black community.
Older Black adults facing gentrification may engage less in neighborhood walking and social opportunities because of gentrification’s effect on mental health. Reminiscence therapy promotes coping which mediates negative feelings, improves mood and emotional well-being, and improves depressive symptoms. The Sharing History Through Active Reminiscence and Photo-Imagery (SHARP) Study integrated reminiscence with neighborhood walking. In two pilots (n = 19 healthy; n = 21 including 8 with MCI) Black adults aged >55 engaged in image-prompted conversations about local history while walking 1-mile 3x/week for 6 months in Portland, Oregon’s historically Black neighborhoods. At months 1, 3, and 6, surveys assessed past-month mental health and mood. Focus groups assessed participant satisfaction with the intervention. Seventy-five percent of participants completed all pilot measures, including all 8 with MCI. Pre/post rankings of “all,” “most,” or “a good bit” of the time (vs. “some,” “little,” or “none of the time”) in the past 4 weeks feeling downhearted/blue was maintained in Pilot 1 at 8%, but in Pilot 2 increased 0% to 10% (healthy) and decreased 13% to 0% (MCI). Feeling calm or peaceful increased in Pilot 1 67% to 83%, and in Pilot 2 60% to 80% (healthy) and 50% to 75% (MCI). Having lots of energy decreased in Pilot 1 92% to 83%, and increased in Pilot 2 70% to 80% (healthy) and 14% to 88% (MCI). In pilots combined, 93% ranked their mood “better” right after group walks and 90% ranked their mood “better” since walks began. In discussions, participants described reminiscing while walking as “joyful,” “very important,” and “something to look forward to.” Conversational reminiscence helped them “become more engaged,” “go through all their feelings” and “respond to changes in a healthy manner." Reminiscence therapy, particularly when paired with walking, may be critical for developing positive coping to mediate the trauma of gentrification and improve mood among older Black adults. Group reminiscence therapy may help healthy and impaired older Black adults cope with neighborhood changes and maintain good mental health, critical for supporting other healthy behaviors like physical and social activity that may prevent cognitive decline and onset of dementia symptoms.
To explore the impact of gentrification on the aging experience of older Black adults to better understand potential links to risk factors for cognitive decline.
Background and Objectives The influx of people with higher socioeconomic status into large Black communities is well documented; less is known regarding smaller, aging Black communities. Older Black adults in Portland, Oregon, among America’s fastest gentrifying cities with the smallest metropolitan Black population, discussed barriers to healthy aging. Perspectives centered on the experience of gentrification, displacement, and its impact on social microsystems, place security, and aging in place. Research Design and Methods One-time focus groups engaged 41 Black adults aged at least 45. A demographic survey included residence area/duration. Discussions were thematically coded. Ecological Systems Theory guided interpretation. Results The majority of participants resided within gentrifying historically Black neighborhoods (89.2%), were aged at least 65 (54.6%), and lived in their neighborhood for at least 21 years (24.3%). Emergent discussion themes were rise and fall of Black ownership, displacement, race-related stress, and financial burden. Gentrification contributed to the dismantling of Black property ownership curated over generations, increased financial burden, and threatened place security. Physical displacement strained social networks, diminishing intergenerational neighborhood ties that supported aging in place. Cultural and physical displacement weakened the sense of social cohesion and belonging and induced race-related stressful interactions with new residents within original and relocation neighborhoods. Discussion and Implications Gentrification in the Pacific Northwest echoes national trends, uprooting critical close-proximity social networks and deteriorating motivation to engage in neighborhood-based social activity. Smaller, aging Black communities may be particularly vulnerable to these effects, which critically affect aging in place. Data inform researchers and policymakers to better understand how gentrification affects smaller, aging Black communities.