Contextual, Cultural, and Sociopolitical Issues in Caring for Latinxs with Dementia: When the Mind Forgets and the Heart Remembers

Chavez‐Dueñas, Nayeli Y.; Adames, Hector Y.; Perez-Chavez, Jessica G.; Smith, Shanna N.

doi:10.1007/978-1-0716-0132-7_2

Cited by 6 publications

(7 citation statements)

References 79 publications

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“…17 Additionally, Hispanic caregivers are often unaware of NPS symptoms in their family members and are more likely to attribute such symptoms to factors other than dementia. 18 In a study of Latino caregivers, only 31% of caregivers attributed NPS to Alzheimer's disease, with the remainder attributing them to medical, interpersonal, personality, mental, or other causes. 19 This difference is important because older Hispanics tend to receive delayed diagnosis and diagnosis at more advanced stages, compared to non-Hispanic Whites.…”

Section: Introductionmentioning

confidence: 99%

Gender Differences in Neuropsychiatric Symptoms Among Community-Dwelling Mexican Americans Aged 80 and Older

Milani

Cantu

Berenson

et al. 2021

Am J Alzheimers Dis Other Demen

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Background and Objectives To assess gender differences in prevalence of neuropsychiatric symptoms (NPS) among community-dwelling Mexican Americans ≥80 years. Research Design and Methods: Using data from Wave 7 (2010–2011) of the Hispanic Established Population for the Epidemiological Study of the Elderly, we analyzed the NPS of 914 participants as determined by the Neuropsychiatric Inventory (NPI) with assessments conducted by their caregivers. Multivariate logistic regression models were used to test the association of individual NPS with gender, adjusting for relevant characteristics. Results: The average age of our sample was 86.1 years, and 65.3% were women. Over 60% of participants had at least one informant/caregiver reported NPS. After adjustment, women had lower odds than men of agitation/aggression but higher odds of dysphoria/depression and anxiety. Discussion: Recognizing gender differences in NPS phenotype could help guide development of culturally appropriate NPS screening and treatment programs.

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Section: Introductionmentioning

confidence: 99%

Gender Differences in Neuropsychiatric Symptoms Among Community-Dwelling Mexican Americans Aged 80 and Older

Milani

Cantu

Berenson

et al. 2021

Am J Alzheimers Dis Other Demen

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“…Latino families face challenges in distinguishing between normal age‐related changes in cognition and those signaling the need for more thorough cognitive evaluations, resulting in delays in help‐seeking until later disease stages 32 . This situation can result from a lack of knowledge about AD/ADRD, 20,33,34 low access to information and to early detection and evidence‐based care, 3,7 and cultural values and beliefs that may interrupt early detection, among others. For example, collectivistic beliefs stemming from the cultural concept known as familismo (the central role of the family unit in decision‐making) may influence Latino individuals to seek encouragement and guidance from family members before seeking advice from healthcare professionals 33,34 .…”

Section: Micro‐level Barriers To Latino Representation In Clinical Ad...mentioning

confidence: 99%

A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro‐meso‐macro perspective

Aranda,

Marquez,

Gallagher‐Thompson

et al. 2023

A&D Transl Res & Clin Interv

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Introduction This perspective paper addresses the US Hispanic/Latino (herein, Latino) experience with regards to a significant public health concern—the underrepresentation of Latino persons in Alzheimer's disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. We present a novel theoretical framework—the Micro‐Meso‐Macro Framework for Diversifying AD/ADRD Trial Recruitment—which considers multi‐level barriers and their impact on Latino trial recruitment. Methods Based on a review of the peer‐reviewed literature and our lived experience with the Latino community, we drew from our interdisciplinary expertise in health equity and disparities research, Latino studies, social work, nursing, political economy, medicine, public health, and clinical AD/ADRD trials. We discuss factors likely to impede or accelerate Latino representation, and end with a call for action and recommendations for a bold path forward. Results In the 200+ clinical trials conducted with over 70,000 US Americans, Latino participants comprise a fraction of AD/ADRD trial samples. Efforts to recruit Latino participants typically address individual‐ and family‐level factors (micro‐level) such as language, cultural beliefs, knowledge of aging and memory loss, limited awareness of research, and logistical considerations. Scientific efforts to understand recruitment barriers largely remain at this level, resulting in diminished attention to upstream institutional‐ and policy‐level barriers, where decisions around scientific policies and funding allocations are ultimately made. These structural barriers are comprised of inadequacies or misalignments in trial budgets, study protocols, workforce competencies, healthcare‐related barriers, criteria for reviewing and approving clinical trial funding, criteria for disseminating findings, etiological focus and social determinants of health, among others. Conclusion Future scientific work should apply and test the Micro‐Meso‐Macro Framework for Diversifying AD/ADRD Trial Recruitment to examine structural recruitment barriers for historically underrepresented groups in AD/ADRD research and care.

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“…Reasons for underutilization of community support among Latinos include lack of awareness of services, language barriers, beliefs that promote informal care, financial limitations, and insensitivity to cultural factors in the formal setting (Ayalon & Huyck, 2002; Casado et al, 2011; Martinez et al, 2021; Chavez-Dueñas et al, 2020; Cruz-Saco & López-Anuarbe, 2017; Zwingmann et al, 2020)). Similar challenges accessing services are faced by other immigrant and minority groups (Shanley et al, 2012; Nielsen et al, 2021; Kenning et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

“…Research on familism and caregiving has produced mixed results (Chavez-Dueñas et al, 2020). While familism may be upheld in principle, these values may also be changing and contradicted by actual behavior (Ramos, 2004; Ruiz & Ransford, 2012; Gelman, 2014).…”

Section: Introductionmentioning

confidence: 99%

Care v. Caring: Obligation, Duty, and Love Among Latino Alzheimer’s Family Caregivers

Martínez

González

2022

J Appl Gerontol

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The number of Latinos living with Alzheimer’s disease is projected to grow. Latinos currently make one-fifth of U.S. family caregivers. In this paper, we explore the cultural scripts and gendered practice of care in Latino families in relation to the underutilization of services to persons with Alzheimer’s disease and related dementias. We conducted interviews with 24 Latino caregivers in Miami-Dade, Florida representing six Latin American countries of origin. Interviews were analyzed using a grounded theory approach. We critically examined the concept of familism in order to better understand in-depth experiences of diverse Latino caregivers and concluded that an ethics of care model better elucidates the complexities of the care experience. Our analysis illustrates the ambivalence, contradictions, and changes in the beliefs and practice of care. These findings can help advance understanding among researchers and providers to develop a formal support system that is responsive to Latino caregiver needs.

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Contextual, Cultural, and Sociopolitical Issues in Caring for Latinxs with Dementia: When the Mind Forgets and the Heart Remembers

Cited by 6 publications

References 79 publications

Gender Differences in Neuropsychiatric Symptoms Among Community-Dwelling Mexican Americans Aged 80 and Older

Gender Differences in Neuropsychiatric Symptoms Among Community-Dwelling Mexican Americans Aged 80 and Older

A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro‐meso‐macro perspective

Care v. Caring: Obligation, Duty, and Love Among Latino Alzheimer’s Family Caregivers

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