Identifying and Leveraging Multi-level Factors to Reduce Structural Barriers Affecting Latino Immigrant Dementia Caregivers Restricted; Files Only

Abstract

The Latino immigrant dementia population remains largely invisible and underserved. Current projections estimate that within the next 37 years, dementia diagnoses will increase sevenfold within the Latino community, representing the largest rise among all racial and ethnic groups in the United States. Latino caregivers of people living with dementia report high levels of burden, symptoms of depression, and anxiety due to the complexities of their responsibilities, financial strain, cultural expectations, and limited social support. While much of the available literature focuses on how individual health beliefs, familial composition, language, and cultural barriers impact the well-being of Latino caregivers, few studies address the structural barriers that negatively affect Latino immigrant dementia caregivers. Often, cultural beliefs and monolingual Spanish speaking are identified as health barriers within the Latino community; however, these factors have historically allowed individuals to navigate societal challenges successfully. Structural change is critical in creating pathways for better educating researchers, healthcare professionals, and policymakers on understanding how culture and language serve as assets rather than obstacles. Without acknowledging structural barriers and ensuring that Latino immigrant dementia caregivers are central to discussions around health inequities, resources will continue to be scarce and misdirected, and poor health outcomes will persist. This study aimed to use the Socio-Ecological Model as a theoretical framework to (1) use qualitative methods to engage Latino immigrant dementia caregivers living in the Atlanta metropolitan area and gain a better understanding of their experiences, (2) employ photovoice to identify strengths and solutions to gaps in support systems used by caregivers in the Atlanta metropolitan area, and (3) conduct a roundtable discussion with caregivers and community influencers to identify pathways for structural change to improve the accessibility of resources for caregivers in the Atlanta metropolitan area. The results of this research included identifying and addressing structural barriers that negatively affected Latino dementia immigrant caregivers and providing insights for developing health-based interventions that better served this population.

Table of Contents

Table of Contents

INTRODUCTION

Historical Context of Dementia Research

Dementia Research in the United States

Latino Dementia Caregivers

Latino Culture, Immigration, and Caregiver Research

Historical Context of Latino Migration

Present Study

Framework

Methodology Overview

Photovoice Methods

CHAPTER 1: WHO ARE WE?: EXPERIENCES AND PERCEPTIONS OF LATINO IMMIGRANTS CAREGIVERS TO PEOPLE LIVING WITH DEMENTIA

Abstract

Background

Dementia and Caregiving in the Latino Community

Diversity in Latino Culture

Health Disparities Faced by Latino Immigrants

Latino Immigrant Caregivers

Health Outcomes Among Latino Immigrant Caregivers

Methods

Design and Setting

Data Collection

Results

Participant Characteristic

Summary of Themes

Discussion

Using Appropriate Terminology

The Role of Culture on Latino Family Dynamics

Acknowledging Unique Challenges

Developing Religious-Based Resources

Study Limitations

Conclusion

CHAPTER 2: AMPLIFYING THE VOICES OF LATINO IMMIGRANT DEMENTIA CAREGIVERS: USING PHOTOVOICE TO ASSESS THE AVAILABILITY AND ACCESSIBILITY OF RESOURCES

Abstract

Background

Methods

Theoretical Framework

Recruitment and Setting

Design

Data Collection

Data Analysis

Results

Summary of Themes

Discussion

Study Limitations

Conclusion

CHAPTER 3: INSIGHTS FROM COMMUNITY INFLUENCERS: STRATEGIES FOR STRUCTURAL CHANGE TO SUPPORT LATINO IMMIGRANT DEMENTIA CAREGIVERS

Abstract

Background

Dementia in the Latino Community

Caregiving in the Latino Community

Gaps in Latino Dementia Caregiving

Latino Immigrant Community

Methods

Photovoice

Theoretical Framework

Recruitment and Settings

Community Forum

Roundtable

Analytic Approach

Results

Prioritizing Education Through Workforce Development

Expanding Communication Tools and Language Support

Strengthening Professional Pathways and Credentialing

Community Engagement and Collaboration to Address Health Needs

Advocacy for Mental Health Services and Policy Support

Discussion

Study Limitations

Conclusion

CONCLUSION

Future Directions

Community Advisory Boards

Socio-Ecological Model

Personal Reflection: Photovoice Methods

Personal Reflection: Recruitment

REFERENCES

APPENDIX

Interview Guides

Recruitment Flyers

About this Dissertation

Rights statement

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School	Laney Graduate School
Department	Nursing
Degree	Ph.D.
Submission	Dissertation
Language	English
Research Field	Health Sciences, Nursing
Keyword	Caregiving Dementia Latino
Committee Chair / Thesis Advisor	Fayron Epps, PhD, RN, FGSA, FAAN, Emory University Ken Hepburn, PhD, Emory University
Committee Members	Jonathan Calvillo, PhD, Emory University Terri Lewinson, PhD, MSW, Yale University

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