Cultural Adaption in Health Care Communication: Tailoring Dementia Palliative Care Research to Better Engage Hispanic/Latino Patients and Caregivers (ADRD-PC)

Hispanic/Latino individuals living with Alzheimer’s disease and related dementias (ADRD), along with their caregivers, experience disparities in access to dementia-focused palliative care and remain underrepresented in clinical research. These challenges are shaped by factors such as language barriers, limited familiarity with palliative care, and differences in how care is understood and communicated.

Alzheimer's Disease and Related Dementias–Palliative Care (ADRD-PC) is a multisite clinical trial that includes systematic identification of patients with ADRD at hospital admission, dementia-specific palliative care, caregiver education and resources, and transitional care support. To address known disparities in engaging Hispanic/Latino patients and caregivers, investigators conducted a structured cultural adaptation of the research processes supporting the ADRD-PC trial. Guided by the Cultural Adaptation Process (CAP) Model, the project focused on adapting recruitment materials, consent documents, communication strategies, and study workflows, rather than the clinical intervention itself, to better reflect participants' cultural values, language preferences, and lived experiences. The adaptation was carried out through three iterative phases: convening Hispanic/Latino caregiving advisors, piloting culturally adapted study materials and procedures, and refining materials and recruitment approaches based on advisor feedback. This process was designed to improve engagement, participation, and representation of Hispanic/Latino patients with ADRD and their caregivers throughout the trial.

Advisors participated in a series of structured meetings to inform how dementia, caregiving, and palliative care should be introduced and discussed. The process was intentionally iterative and community-informed, emphasizing understanding over direct translation. As reflected by project leadership:

Key adaptations included linguistically and culturally tailored recruitment and consent processes, bilingual and bicultural staffing, intentional word choice, and communication strategies that center family involvement and culturally relevant decision-making. The adaptation also highlighted that language preferences may differ within patient–caregiver dyads, reinforcing the need for flexible, bilingual approaches.

Implemented within a hospital-based setting, this initiative aims to improve engagement, understanding, and equitable access to supportive dementia care for Hispanic/Latino patients and their caregivers.

This model focuses on the cultural adaptation process rather than trial effectiveness and includes lessons learned during adaptation instead of patient clinical outcomes.

Key areas assessed included:

• Enrollment of Hispanic/Latino patients and caregivers
• Feasibility of recruitment within hospital settings
• Acceptability of culturally adapted materials and processes
• Caregiver understanding of palliative care
• Barriers to participation and engagement

Findings from the adaptation process highlight how these factors influence engagement:

• Only 2 of 8 caregiving advisors had prior familiarity with palliative care, highlighting limited baseline knowledge
• Advisors identified common misconceptions, including associations with hospice, end-of-life care, and placement outside the home
• Recruitment during hospitalization was often challenging due to timing, stress, and competing priorities
• Language and terminology played a critical role in shaping understanding and willingness to participate

These insights have direct implications for how clinicians and researchers approach engagement with Hispanic/Latino patients and caregivers:

Rather than evaluating intervention effectiveness, the adaptation process generated practical insights that informed more culturally responsive recruitment, communication, and implementation strategies for Hispanic/Latino patients and caregivers participating in dementia palliative care research.

The cultural adaptation process required:

• Bilingual, bicultural staff
• Certified translation and backtranslation to ensure accuracy of materials
• Caregiver advisory group participation (with compensation)
• Iterative team meetings and qualitative analysis
• Development of recruitment scripts and bilingual educational materials

The process was time and resource intensive, involving multiple planning meetings, transcription of discussions, and ongoing refinement.

Barriers encountered included:

• Recruitment during stressful hospitalizations
• Limited flexibility in IRB-approved documents
• Variability in language preferences within families
• Persistent stigma around dementia and palliative care

Key elements that are potentially scalable include:

• Use of caregiver advisory boards
• Structured cultural adaptation frameworks (CAP Model)
• Bilingual recruitment and consent processes
• Terminology and communication strategies that reduce stigma

The study highlights that adaptation is most effective when built into the project from the beginning, rather than added after implementation. 

The cultural adaptation activities were supported through an NIH-funded administrative supplement to the ongoing multisite ADRD-PC clinical trial. The authors note that cultural adaptation requires dedicated time, personnel, and financial resources and should be incorporated into study planning and budgeting from the outset. Outside of a research context, sustainability and scalability depend on:

• Availability of bilingual, bicultural workforce
• Institutional willingness to invest in and support cultural adaptation efforts
• Early integration of cultural adaptations into study design or care design

Sustainability challenges include:

• Time demands on interdisciplinary teams
• Need for continued community engagement and compensation

While the formal adaptation process was tied to the trial, the work has informed ongoing and future research efforts focused on Hispanic/Latino populations and may be expanded to other linguistic and cultural groups.

• Engage caregivers and community members as partners from the start
• Compensate advisors to support equitable participation
• Do not assume familiarity with palliative care;, use plain language and culturally appropriate terms
• Use clear, descriptive language when introducing palliative care
• Avoid terminology that may evoke fear or misunderstanding
• Prioritize relationship-based, in-person recruitment when possible
• Be mindful of timing, as hospital settings may not always be ideal for recruitment
• Build flexibility into study design to allow for cultural adaptation
• Recognize that trust-building is ongoing

Hillary D. Lum, MD, PhD
University of Colorado Anschutz Medical Campus
Principal Investigator

Liliana A. Ramirez Gomez, MD
Associate Chief, Memory Disorders Division, Mass General Brigham
Assistant Professor of Neurology, Harvard Medical School

Caroline Rivers, MPH
Research Team Member

Interdisciplinary Research Team
Multisite collaborators across:

• University of North Carolina
• University of Colorado
• Massachusetts General Hospital

Hispanic/Latino Caregiving Advisors:

• Eight compensated advisors with lived caregiving experience and community insight who directly informed study adaptation and implementation