Latin Dance Effects on Cardiorespiratory Fitness and Physical Function in Middle-Aged and Older Latino Adults.

We tested if a dance trial yielded improvements in physical function and cardiorespiratory fitness (CRF) in middle-aged/older Latino adults. Physical activity was assessed using the Community Healthy Activities Model Program for Seniors, physical function with the Short Physical Performance Battery (SPPB) protocol, and estimated CRF with the Jurca nonexercise test model. Multivariate analysis of covariance models found significant change in SPPB protocol total scores, F(1, 329) = 4.23, p = .041, and CRF, F(1, 329) = 5.16, p = .024, between the two study arms in favor of the dance group. Mediation models found moderate- to vigorous-intensity physical activity to mediate to mediate between group and SPPB scores (ß = 0.054, 95% confidence interval [0.0142, 0.1247]). Moderate- to vigorous-intensity physical activity and total physical activity were found to partially mediate between group and CRF (ß = 0.02, 95% confidence interval [-0.0261, 0.0751]), with the direct pathway no longer being significant (p > .05). This provides support for Latin dance programs to have an effect on SPPB protocol and CRF.

The influence of Latino cultural values on the perceived caregiver role of family members with Alzheimer's disease and related dementias.

OBJECTIVES: We explored how Latino cultural values play a role in perceived caregiving experiences. DESIGN: We conducted a qualitative study that used individual, in-depth, semi-structured interviews with middle-aged and older Latinos who were primary caregivers of family members with Alzheimer's disease and related dementias (ADRD). The interview guide consisted of questions about participants' perceptions of family caregiving and interrelationships between the caregiver and care recipient. The interviews were recorded, translated, and transcribed verbatim. We performed direct content analysis. RESULTS: Participants were caregivers, 50-75 years old (n = 16), and the majority were female. We identified four cultural values that were salient to participants' caregiving experiences: (a) familismo, (b) fatalismo (c) marianismo, and (d) machismo. CONCLUSION: Latino cultural values influenced the role of caregiving and caregiving roles of family members with ADRD. Future research should consider these values as they affect different familial and health dynamics.

Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer's disease and related dementias.

Introduction: Despite evidence that Hispanic/Latino populations are 1.5 times more likely than non-Latino Whites to develop Alzheimer's disease and related dementias (ADRD), Latinos are underrepresented in clinical trials testing treatments for ADRD. Data are needed on facilitators of ADRD clinical trial participation in Latinos. We leveraged in-depth qualitative methods to elucidate barriers and facilitators to participating in ADRD clinical trials in a large and diverse sample of Latinos; and to provide timely and actionable strategies to accelerate representation of Latinos in clinical trials on ADRD. Methods: Data were collected in California between January 2019 and June 2020 from 25 focus groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with Latino adults ages 50+ (n = 75), and eight with caregivers of Latino older adults with ADRD (n = 52). Twelve community-based organization administrators were also interviewed. Transcripts of FGs and interviews were entered into Atlas.ti software. Three independent team members analyzed the transcripts with inductive/deductive qualitative content analysis. We triangulated data from stakeholder groups across sites, we used collaborative coding, and used the Consolidated Criteria for Reporting Qualitative Research. Results: An overarching theme was a tension between wanting to learn more about ADRD and to participate in ADRD research but having limited awareness and opportunity. Five themes were identified: (1) remaining in limbo, (2) wanting information about ADRD, (3) wanting information on research about ADRD, (4) clearing researchers through trusted local organizations, and (5) practicing altruism through engagement in research opportunities. Discussion: To increase representation of Latino communities in clinical trials on ADRD, bilingual information and education on ADRD and clinical trials needs to be better disseminated. Also, working with trusted local, regional, and national organizations can increase participation. Importantly, Latino participation can increase when research teams demonstrate altruistic actions and inform participants of public health reasons requiring their involvement. HIGHLIGHTS: Participation in clinical trials on Alzheimer's disease and related dementias (ADRD) is limited among Latinos/Hispanics.Knowing the high prevalence of ADRD in Latinos increases willingness to participate.Observing altruism from researchers increases willingness to participate.Invitations from multiple organizations increases willingness to participate.Researchers should include public health reasons requiring Latinos' involvement.

ABCC6 and Pseudoxanthoma Elasticum: The Face of a Rare Disease from Genetics to Advocacy.

Pseudoxanthoma elasticum (PXE) is an autosomal recessive disorder characterized by the mineralization of connective tissues in the body. Primary manifestation of PXE occurs in the tissues of the skin, eyes, and cardiovascular system. PXE is primarily caused by mutations in the ABCC6 gene. The ABCC6 gene encodes the trans-membrane protein ABCC6, which is highly expressed in the kidneys and liver. PXE has high phenotypic variability, which may possibly be affected by several modifier genes. Disease advocacy organizations have had a pivotal role in bringing rare disease research to the forefront and in helping to sustain research funding for rare genetic diseases in order to help find a treatment for these diseases, pseudoxanthoma elasticum included. Because of these initiatives, individuals affected by these conditions benefit by being scientifically informed about their condition, having an effective support mechanism, and also by contributing to scientific research efforts and banking of biological samples. This rapid progress would not have been possible without the aid of disease advocacy organizations such as PXE International.