Creating a Dementia Friendly Community in an African American Neighborhood: Perspectives of People Living with Dementia, Care Partners, Stakeholders, and Community Residents.

A dementia friendly community allows people with dementia and their care partners to remain engaged in their community well into the disease. This study presents the results of primary research aimed at exploring perceptions regarding building a dementia friendly community in an African American neighborhood in northeast Florida. Twelve focus groups and five interviews were conducted with people living with dementia, informal and formal care partners, community stakeholders and neighborhood residents, and analyzed using a grounded theory approach. Three main themes emerged from the analyses, including (1) perceived needs, (2) facilitators and barriers to being dementia friendly, and (3) opportunities for the community to become more dementia friendly. Study findings highlight the unique needs of a single African American neighborhood and the importance of culturally tailoring the dementia friendly model to diverse communities.

Testing an Alzheimer's Disease Educational Approach in Two African American Neighborhoods in Florida.

African Americans experience a significantly greater burden of Alzheimer's disease (AD) compared to non-Hispanic White Americans. Raising awareness and increasing knowledge of AD within African American communities is an important step towards addressing these disparities. The purpose of this study was to assess the effectiveness of two approaches to sharing AD knowledge with community residents. Using a quasi-experimental design, African American participants were recruited through community partners and local resources in two comparable neighborhoods in Duval County, Florida, which formed the intervention and the comparison groups for this study. The identical 40-min educational lecture was provided to both groups. In the intervention community, the lecture was followed by focus group sessions modeled after the Dementia Friendly America toolkit. In the comparison community, the lecture was followed by a social event where participants could interact informally with the speaker and dementia outreach staff. A brief quantitative survey assessing AD knowledge was administered to participants in both groups before the education session, immediately after the lecture, and 2 months later. Results indicate that both groups improved their knowledge scores at immediate post-test. Scores for both groups declined at 2-month follow-up, but the comparison group's scores declined more precipitously than the intervention group's scores (p = 0.0.21). These results suggest that conducting focus groups and interviews following a lecture on AD may help better retain AD knowledge over time.

CLEC3B p.S106G Mutant in a Caucasian Population of Successful Neurological Aging.

A number of efforts are underway to better understand the role of genetic variation in successful aging and longevity. However, to date, only two genes have been consistently associated with longevity in humans: APOE and FOXO3, with the APOE ɛ2 allele also protective against dementia. Recently, using an exome-wide SNP array approach, a missense variant CLEC3B c.316G>A (rs13963 p.S106G) was reported to associate with longevity in two independent cohorts of Japanese and Chinese participants. Interestingly, CLEC3B p.S106G is more frequent in Caucasian populations. Herein, we examined the frequency of CLEC3B p.S106G in a Caucasian series of 1,483 neurologically healthy individuals with a specific subset >80 years of age. Although our findings do not support an association between CLEC3B p.S106G and aging without neurological disease (p = .89), we confirmed the association between the APOE ε2 allele and better survival without neurological disease (p = .001). Further assessment of healthy aged cohorts that retain intact neurological function will be critical to understand the etiology of neurodegenerative disease and the role of age at risk.

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups.

INTRODUCTION: Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. METHODS: African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. RESULTS: Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy. DISCUSSION: The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.

Telephone-based, cognitive-behavioral therapy for African American dementia caregivers with depression: initial findings.

OBJECTIVES: Discuss initial findings of a randomized clinical trial comparing the effects of telephone-based and face-to-face (f-to-f) cognitive-behavioral therapy (CBT) on changes in caregiver (CG) burden, assistance support, depression, and health status for African American (AA) CGs with depression. DESIGN: Pilot study using a prepost, two-group design with 14 enrolled and randomized participants. MEASURES: Subjective Burden subscale of the Caregiver Appraisal Inventory, Assistance Support subscale of the Interpersonal Support Evaluation List, Physical Symptoms subscale of the Caregiver Health and Health Behavior Inventory and the Center for Epidemiologic Studies Depression Scale. RESULTS: Prepost improvements were found on 11 completers across all measures for both telephone and f-to-f CBT. Moderate and similar effects sizes for CG subjective burden and assistance support were found for both the telephone and f-to-f groups. Effect sizes for physical symptoms and depression varied from low to moderate, respectively, with a trend toward smaller improvements in f-to-f CBT than in telephone CBT. Qualitative analysis highlighted CGs' perceptions of the active ingredients of treatment and provided indirect support for similar gains in emotional and psychosocial functioning across the two treatment modalities. CONCLUSIONS: Both telephone-based and f-to-f CBT showed improvements in depression, subjective burden, and assistance support in dementia AA CGs. Replication with a larger sample size (N = 106) is currently in progress. Study limitations and future directions for research are also addressed.

A cost effective method of identifying and recruiting persons over 80 free of dementia or mild cognitive impairment.

For observational or prevention studies, accurately identifying by mail and telephone cognitively normal elderly volunteers would be cost effective. We describe how to recruit cognitively normal sib-pairs over age 80 using commercially available lists by age and ZIP code. We mailed an Institutional Review Board-approved letter to 24,366 persons over 85 around Jacksonville, FL, and received approximately 3,000 postcard replies with approximately 500 answering 3 screening statements affirmatively. Of these, we recruited 128 persons who underwent both in-person and telephone evaluations, the latter using the Telephone Interview of Cognitive Status-modified (TICS-m) and Clinical Dementia Rating scale (CDR). Blinded to the TICS-m and CDR data, clinicians made a consensus diagnosis for each participant, 120 were normal and 8 had mild cognitive impairment. With CDR, 119 patients (93%) screened as normal, and of these 115 (97%) were confirmed as normal with the consensus diagnosis. A TICS-m score cut-off of <29 resulted in a similar proportion of normals in the screened sample (97% or 103/106); however, 13 normal volunteers would have been excluded because they scored <29 on the TICS-m. Supplementing the sample, we recruited 12 age-matched cases having consensus diagnosis of dementia (n=2) or mild cognitive impairment (n=10). A CDR>0 correctly identified 12/12, whereas the TICS-m <29 correctly identified 7/12. Hearing loss present in 50% did not influence TICS-m or CDR performance. Using stringent entry criteria and the telephone CDR, this method accurately identified normal elderly persons.

Mayo's Older African Americans Normative Studies: normative data for commonly used clinical neuropsychological measures.

This report describes the methodology and sample characteristics of Mayo's Older African Americans Normative Studies (MOAANS). These studies reflect a multidisciplinary, collaborative effort by investigators at Mayo Clinic to provide age-appropriate normative data for African American elders on commonly used neuropsychological tests. A sample of 309 community-dwelling individuals over age 55 contributed to the MOAANS sample. Norms were calculated for midpoint age groups, based on percentile scores derived from cumulative frequencies of raw test scores. Demographic, medical, and sociocultural data were also collected, and are summarized to assist clinicians in making determinations regarding the appropriateness of these norms for individual patients. In most cases, the use of MOAANS norms should improve diagnostic accuracy in dementia evaluations of African American elders.

Apolipoprotein epsilon4 allele frequency in young Africans of Ugandan descent versus African Americans.

Through its role in lipid metabolism, Apolipoprotein epsilon4 (ApoE4) may affect "brain repair" in stroke, brain hemorrhage, Alzheimer's disease, and other brain injury syndromes for which African Americans may have greater morbidity and mortality. Cross-cultural evaluations of these and other genetic factors may provide insight on possible ethnic differences in risk of morbidity to acute central nervous system (CNS) injury and chronic neurodegenerative processes. As an initial step toward expanding knowledge of ApoE allele frequencies for persons of African descent, we compared ApoE genotype of a group of 70 young Ugandans to 59 (subset of a larger group of 342 African Americans of all ages) age-matched African Americans and to published frequencies for Caucasians and Asians. We found that the ApoE4 and epsilon2 alleles are more frequent in Ugandans (U) than Caucasians (C) or Asians (A) with corresponding alleles showing significant elevations of epsilon2 (U 15.71%, C 8.40%, A 4.20%) and 14 (U 25%, C 13.70%, A 8.90%) (p < .001). Comparing the differences between Ugandans and age-appropriate African Americans (AA) was not statically significant, but this outcome may be due to small sample size. These results provide the only published ApoE frequencies for Ugandans and the complete set of data provides the largest published community group of ApoE frequencies for African Americans.