It’s More Than Language: Cultural Adaptation of a Proven Dementia Care Intervention for Hispanic/Latino Caregivers

Abstract

Although Hispanic/Latino older adults are at disproportionate and increased risk for Alzheimer’s disease and related dementias, few evidence-based supportive care interventions are specifically developed for or adapted for this population. Adapting a supportive care intervention requires more than Spanish language translation; it necessitates an understanding of cultural nuances and care preferences of Hispanic/Latino families and staff who implement the intervention. This article describes the cultural adaptation of the Adult Day Service Plus intervention for delivery by staff to Hispanic/Latino caregivers, which was guided by the cultural adaptation process model. Also, using the Framework for Reporting Adaptations and Modifications—Enhanced, we discuss (a) when modifications were made, (b) who determined the modifications needed, (c) what aspects of the intervention were modified, (d) the relationship to fidelity and how fidelity was maintained, and (e) reasons for modifications. Modifications to the delivery and content were changed to reflect the values and norms of both the Hispanic/Latino staff and the caregivers they serve. As supportive interventions for caregivers are developed and implemented into real-world settings, inclusion of cultural elements may enhance research participation among Hispanic/Latino provider sites, people living with dementia, and their caregivers. Cultural adaptation is an essential consideration when developing, adapting, and implementing previously tested evidence-based interventions. Cultural adaptation offers an important lens by which to identify contextual factors that influence successful adoption to assure equity in the reach of evidence-based programs.

Background and Objectives

An estimated six million people in the United States live with Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) and are cared for by over 11 million unpaid caregivers (Alzheimer’s Association, 2021). Although AD/ADRD affects all racial and ethnic groups, Hispanic/Latino older adults are at increased risk for AD/ADRD and are disproportionately affected. Specifically, Hispanic/Latino older adults are nearly 1.5 times as likely to have AD/ADRD compared to their White counterparts (Alzheimer’s Association, 2021). This is a growing public health concern as the older Hispanic population in the United States is increasing and will see the largest increase in AD/ADRD by 2060 (Matthews, 2019). As the number of Hispanic/Latino older adults living with AD/ADRD grows, so will the need for caregivers. The high demands and responsibilities of dementia care can strain caregivers’ capacity, increase stress, and adversely influence their physical, emotional, and social well-being (Arthur et al., 2018; Fabius et al., 2020; Parker et al., 2021). Hispanic/Latino caregivers also express more distress and depression than their White or Black counterparts (Belle et al., 2006), yet they are consistently underserved and also underrepresented in supportive care trials (Alzheimer’s Association, 2021).

Due to cited cultural preferences, Hispanic/Latino people living with dementia have a strong reliance on family to provide care and often underutilize supportive services due to cultural and linguistic barriers (Arévalo-Flechas et al., 2014; Nkimbeng & Parker, 2021). Core cultural values, such as familismo (dedication and commitment to family), personalismo (personal relationships), or respeto (respect), influence how Hispanic/Latino caregivers perceive and cope with their role as caregivers and ultimately how they seek and utilize available supportive programs and services (Arévalo-Flechas et al., 2014). Thus, most families provide care at home with few relying on home-and-community-based services (HCBS) for assistance throughout the disease trajectory.

Adult Day Services (ADS) are one such HCBS that allows caregivers’ time for work, to run errands, to attend to their own medical needs, and/or to receive respite while also providing the person living with dementia access to activities in a safe environment (Fields et al., 2014; Parker & Gitlin, 2021). In comparison to other HCBS, ADS are the most racially and ethnically diverse HCBS (Harris-Kojetin et al., 2016; Lendon et al., 2020). For Hispanic/Latino caregivers, access to dementia supportive programs and services that are responsive to their cultural practices, language, and care preferences is especially important given the risk for ADRD in this population (Nkimbeng & Parker, 2021).

Although providing much needed respite for caregivers, ADS typically do not provide additional nor tailored support to caregivers to address their daily care challenges or the caregiver’s own feelings of distress. There are now a number of evidence-based care interventions (Walter & Pinquart, 2020) that although demonstrating positive outcomes in research are not integrated into everyday community use or accessible to a larger percent of the population. One way to rectify this is to implement evidence-based programs into HCBS, such as ADS. The ADS Plus Program is one study that systematically provides caregivers the support they need in a setting they are already utilizing and with the staff they know. A pilot study testing ADS Plus showed positive outcomes with regard to caregiver well-being and ADS use as well as declines in nursing home placement (Gitlin et al., 2006). A randomized control study of the same ADS Plus Program is currently testing for outcomes and implementation potential in 49 ADS sites across the United States (Gitlin et al., 2019).

During ADS Plus delivery, the investigators discovered a barrier to recruitment and accessibility among ADS sites that served predominantly Hispanic/Latino families. Although one major barrier was English-speaking inclusion criteria which investigators had been aware of, other factors also emerged, including the acceptance of the program by staff and their ability to implement its protocols. Thus, although ADS sites with a high proportion of Hispanic/Latino clients were specifically targeted, various implementation difficulties were encountered necessitating cultural adaptations to the program.

To understand the role of cultural adaptation in implementation science, the current article describes a case study of how the ADS Plus Program was adapted for delivery by ADS staff to their Hispanic/Latino caregivers. The cultural adaptation process (CAP) model (Domenech Rodríguez et al., 2011) was utilized as the theoretical underpinning to inform the cultural adaptation of the ADS Plus Program. We also deployed the Framework for Reporting Adaptations and Modifications—Enhanced (FRAME; Stirman et al., 2019). The FRAME documents “who” made the modification, the context of the modifications, and the “nature” of the modification. Using FRAME allows us to understand and document the modifications made while maintaining the fidelity of the program, as well as an opportunity to empirically and qualitatively analyze whether such adaptations were associated with key implementation outcomes (i.e., feasibility and fidelity). The cultural adaptation methodology used in this study can inform implementation science in gerontology to assure it achieves its essential purpose, which is health equity for older adults, their family/friend caregivers, and among health care providers (Quiñones et al., 2020). Specifically, attending to cultural adaptation helps to assure that older persons and the people that care for them have access to and can engage with evidence-based practices, and in the case of ADS Plus, dementia care services.

What Is Cultural Adaptation and Why Is It Important?

The term “cultural adaptation” refers to “the systematic modification of an evidence-based treatment or intervention protocol to consider language, culture, and context in such a way that is compatible with the client’s cultural patterns, meaning, and values” (Bernal et al., 2009, p. 362). As the definition indicates, culturally adapting interventions go beyond the translation of intervention materials into the language of the targeted community. Concordance is further enhanced by utilizing bilingual and bicultural staff in delivering interventions; incorporating cultural expressions and incorporating messaging that is culturally appropriate and meaningful; and using content and images that are reflective of the targeted community, as well as their cultural practices, contexts, and challenges that reflect lived experiences and preferences of the targeted individuals as well as interventionists/staff themselves (Soto et al., 2018).

There is limited evidence as to the cultural adaptations made to existing interventions for Hispanics/Latino caregivers of people with dementia (Aravena et al., 2022). Adaptations are not typically described in studies testing programs for different populations, nor has there been a focus on determining whether adaptations enhanced program effectiveness and implementation (Kirk, 2020). Past literature reviews have identified a small number of research studies focused on adapting interventions for Hispanic/Latino caregivers of people with dementia living in the United States, with most of these studies emerging from a single clinical trial, the Resources for Enhancing Alzheimer’s Caregiver Health II intervention (Llanque & Enriquez, 2012). Cuidando con Respeto, a psychoeducational training program adapted from The Savvy Caregiver for Spanish-speaking caregivers (Kally et al., 2014), reported a number of cultural adaptations, including language and references to cultural objects and terminology (Kally et al., 2014). However, no studies to date have detailed adaptations using a systematic approach or framework such as the FRAME. Thus, despite the increase in the proportion of Hispanic/Latino persons living with AD/ADRD, there remains a dearth of adapted implementation trials to support their cultural preferences and values due in part to Hispanics’/Latinos’ disproportionate underrepresentation in AD/ADRD research. Whether due to stringent eligibility criteria, the lack of bilingual staff, or the fear of negative consequences for immigration status by potential participants, the lack of representation in dementia-related research reduces the generalizability of study findings, and new interventions less meaningful, appealing, and efficacious for Hispanic/Latino caregivers (Massett, 2021).

Both implementation science and a cultural adaptation lens provide insights on how to transform interventions so that they are more available and accessible in usual care settings (Cabassa & Baumann, 2013). Implementation science focuses on contextual factors at multiple levels (e.g., provider and organization) that affect implementation through the stages of adoption, implementation, and sustainability. One goal of implementation science is to prepare and change the context of practice at multiple levels to accommodate and enhance the fit of a new intervention within a setting (and in many instances, adapt the intervention itself to do so).

Similarly, cultural adaptations focus on how to make interventions more ecologically valid by systematically considering the clients’ and providers’ language, cultural values, norms, meanings, and perspective (Bernal et al., 1995; Cabassa & Baumann, 2013). A goal of cultural adaptation is to modify interventions without comprising the fidelity in order to enhance the fit between the intervention treatment and the clients and providers’ cultural values, preferences, and norms (Cabassa & Baumann, 2013). Thus, both implementation science and cultural adaptation share similar end goals, yet there is often a lack of integration in the literature on processes to utilize both perspectives to improve the fit of interventions for diverse populations. However, there is an ongoing “dialogue” between scholars within and across implementation science and cultural adaptation to better integrate theories, models, and frameworks of implementation science to accommodate the unique requirements and approaches inherent to cultural adaptation (Baumann et al., 2017; Cabassa & Baumann, 2013).

In mental health, culturally adapted interventions are suggested as more effective than control or nonadapted interventions (Benish et al., 2011; Cabassa & Baumann, 2013; Griner & Smith, 2006; Soto et al., 2018). However, existing studies in mental health and other fields are limited by small sample sizes, scarce documentation of the unique cultural aspects of an intervention that were adapted, lack of or no account of interventionist/provider perspectives, and little consideration of cultural equivalence of the intervention or disease process (Castro et al., 2010; Helms, 2015; Soto et al., 2018). Additionally, for those interventions that have been adapted culturally and found to be efficacious, most have not been implemented into usual care/practice.

There is a growing body of literature on how to engage in the CAP, informed by various theoretical models, including the Ecological Validity Model (EVM) and the CAP model described later (Bernal et al., 1995; Domenech-Rodriguez & Wieling, 2005; Hwang, 2006). The EVM is the first known framework in the literature to provide a systematic method to deliver and document cultural adaptations for planning, replication, dissemination, and translation (Bernal et al., 2009). The EVM was originally developed for Latino populations and consists of eight dimensions that serve as a guide for adapting existing interventions for a specific racial/ethnic group. These dimensions include: language, persons, metaphors, content, concepts, goals, methods, and context. The inclusion of the eight cultural dimensions into an intervention strengthens the ecological validity and overall external validity of the adapted program (Bernal & Sáez-Santiago, 2006; Bernal et al., 1995). The EVM focuses on cultural adaptations to the intervention manual and context in which the intervention is delivered, without consideration of feedback from the community of interests. To account for the perspectives of the community who are potentially served by an intervention, Domenech Rodríquez, and Wiehling expanded the EVM to emphasize its process-related elements. Thus, the CAP was conceptualized, and it is now available for use in conjunction with the EVM.

Cultural Adaptation Process Model

The CAP model proposes three phases of adaptation which include: (a) researchers and community stakeholder collaboration in order to find a balance between community needs and scientific integrity, (b) piloting of the intervention and measures used to evaluate the intervention, and (c) integrating observations and data gathered in Phase 2 into an adapted intervention (Table 1). The phases of the model are iterative, and consist of ongoing evaluation, revision, and reinvention.

Table 1.

Cultural Adaptation of ADS Plus for Spanish Speaking Participants: Phases and Research Activities

Phases	Research activities
Phase 1―Setting the stage: Researchers and community stakeholders collaborate to find a balance between community needs and scientific integrity	Hired a translation firm to translate all of the study materials into Spanish. Hired a certified Spanish language interviewer to determine if the translated material was culturally appropriate. The interviewers also administered all screening/consent calls, telephone-based consent procedures, follow-up surveys, and semistructured interviews in Spanish. Translation of all research-related materials into Spanish using backward and forward methodologies. Assured equivalence in meaning of translated material and determine if outcome measures had a Spanish equivalent with known psychometric properties. Examined the readability of research recruitment material, and changed the reading level from college level to eighth to ninth grade level. Collaborated with interventionists from ADS sites known to have a large proportion of Hispanic/ Latino caregivers, to assess community needs of Hispanic/Latino caregivers and cultural elements needed for adaptation. Conducted focus groups with interventionists to identify cultural elements to include in adaptation of content-level (i.e., recruitment material and intervention material) and context-level (i.e., training to interventionist and delivery of treatment sessions) research material.
Phase 2―Initial adaptation: Preliminary adaption test and refinement	Reviewed and discussed translated research material with the certified Spanish interviewer and with interventionists from ADS Plus sites. Changed inclusion criteria to “English and/or Spanish speaking.” Conducted additional focus groups with interventionists to test if adapted recruitment material reflected cultural elements based on initial focus group feedback. Developed a recruitment video, based on initial focus group feedback, that reflected the cultural elements and values of Hispanic/Latino communities to encourage participation in ADS Plus based on initial focus group feedback. Translated the educational tool A Caregiver’s Guide to Dementia: Using Activities and Other Strategies to Prevent, Reduce and Manage Behavioral Symptoms into Spanish.
Phase 3―Adaptation iterations:	Each ADS site with a large proportion of Hispanic/Latino caregivers received adapted recruitment material and translated research material and tools. Added measures of cultural values of familiso and respeto to recruitment materials. Removed the use of REDCap technology for data entry due to expressed adaptations need from interventionist.

Notes: ADS = Adult Day Service. Cultural adaption is guided by the cultural adaptation process model (Domenech-Rodriguez & Wieling, 2005).

Case Study

Later we describe how we utilized the CAP process to culturally adapt the ADS Plus Program to increase its cultural relevance, appeal, and acceptance among staff who deliver interventions for Hispanic/Latino caregivers. The main trial is testing whether augmenting ADS with a systematic support program for family caregivers of ADS clients improves caregiver well-being and increases ADS use (Gitlin et al., 2019). The caregiver support program (Gitlin et al., 2006; Reever et al., 2004), ADS Plus, is delivered by ADS staff who are trained in its protocols. Through face-to-face meetings on-site or telehealth, staff provide disease education, referral and linkages, support, and nonpharmacological strategies tailored to family needs and family-identified daily care challenges. A full protocol of the parent study is published elsewhere (Gitlin et al., 2019). The ADS Plus study and its adaptations were reviewed and approved by The Johns Hopkins Medical Institution and Johns Hopkins School of Public Health Institutional Review Boards (ADS Plus Clinical Trial #NCT02927821).

Staff at sites with a high proportion of Hispanic/Latino caregivers had significant challenges implementing the ADS Plus intervention as originally designed and required training and support that exceeded what other English-speaking sites appeared to require. These additional trainings and supports were outside of the scope of the parent study. Staff was also not complying with implementation or data entry using online data capture tools (i.e., REDCap). It was apparent that adaptations to study protocols (ADS Plus) were necessary and that such adaptations had to reflect cultural nuances in the involvement of families, staff, and administrators from different cultural and language backgrounds. The goal of our modifications was to improve the cultural fit of the ADS Plus Program for both staff and the families they serve to increase engagement with Hispanic/Latino families using ADS.

To adapt ADS Plus, we followed the three-phase approach of the CAP model (Table 1). Phase 1 consisted of translating and adapting ADS Plus based on stakeholders’ self-identified needs. During this phase, we translated all study-related material (recruitment materials, interview questionnaires, and intervention materials) into Spanish. We also conducted focus groups with staff/ interventionists (n = 5) to identify their understanding of community needs and adaptations that would support their delivery of the program. The initial focus group, as well as those conducted in the subsequent phases of the adaptation process, was conducted in English, and a certified Spanish interviewer (author E. Johnson) served as a translator for participants who chose to express their ideas in Spanish. Focus groups were completed via Zoom and took one and a half hours to complete.

Phase 2 consisted of testing noted adaptations and their refinement. During this phase we held another focus group with staff/interventionists (n = 5) to test if the adapted recruitment material reflected cultural elements based on initial focus group feedback. The feedback obtained from the focus group was used to inform further adaptations to the treatment manual and recruitment material.

Phase 3 involved the distribution of adapted materials to participating sites (n = 6) with a predominately Hispanic/Latino population and a beta test phase within those sites participating in the nationwide hybrid effectiveness trial (Gitlin et al., 2019).

The Use of FRAME to Categorize Adaptations

To understand the adaptations derived from the three phases of the CAP model, we used the FRAME model as described later.

When and how in the implementation process modifications were made

As noted earlier, we discovered early on when implementing the study that cultural and linguistic adaptations were necessary to enable effective delivery of the intervention by staff and recruitment of Hispanic/Latino caregivers. For this reason, modifications were reactive to the additional support required for these participating sites. Therefore, we developed an ancillary study to identify and comprehensively record the cultural adaptations required to tailor intervention content and delivery for staff to more effectively reach Hispanic/Latino caregivers.

Who determined the modifications and what was modified

To accomplish our aims, we translated all ADS Plus study materials in Spanish using forward and backward methodologies (Table 2). Best practices were used to assure equivalence in meanings and determine if outcome measures had a Spanish equivalent with known psychometric properties. To support this effort, we hired a translation firm to translate all of the study material into Spanish. We also hired a certified Spanish interviewer (E. Johnson) who reviewed translated material and provided guidance as to the translation’s cultural appropriateness. While staff and families came from different Spanish-speaking countries and cultures, the translation favored a “generic” Spanish approach to assure understanding and appeal to all participants. The interviewer also administered all screening/consent calls, telephone-based consent procedures, follow-up surveys, and semistructured interviews in Spanish. We changed our inclusion criteria to include “English and/or Spanish speaking.” Furthermore, we examined and changed the readability of our research recruitment materials from college level to an eighth or ninth grade reading level. We also kept our sentence length to less than 15 words, used an active voice, and used fewer multisyllable words (Hill-Briggs et al., 2012). These content-level modifications to the recruitment material were needed to promote optimal level of engagement among participants.

Table 2.

Adaptations Made to ADS Plus Using the FRAME

Content-level adaptations	Adaptations made
Recruitment material
Flyer	Translation into Spanish Identified if Spanish translation was culturally appropriate Changed the readability of material from college level to an eighth or ninth grade reading level
Frequently asked questions
Letter to ADS clients
Video	Developed a recruitment video that reflected the cultural elements and values of Hispanic/ Latino communities
Research material
Assessments (i.e., survey questions)	Identified if Spanish equivalent was available Translated assessment if a Spanish equivalent was not available
Context-level adaptations
REDCap	Removed the use of technology for data entry Sites now scan and email data entry forms

Notes: ADS = Adult Day Service; FRAME = Framework for Modification and Adaptations.

To further ensure we captured appropriate cultural nuances and shared decision-making in the cultural modifications, we held longitudinal focus groups (n = 3) with interventionists at the participating ADS Plus sites from June 2020 to October 2020. These focus groups were used to identify specific adaptations to procedures, protocols, and intervention materials. We matched the eight elements of the EVM (Bernal & Sáez-Santiago, 2006; Bernal et al., 1995) to develop questions for our focus group guide. Findings from our focus groups led us to include cultural elements such as familiso and respeto into our recruitment materials. Another finding from our focus group was that the use of flyers or letters to recruit participants into the study was not the most effective means to encourage participant nor site engagement. Relying on this feedback, we developed a recruitment video that used animation characters to describe the benefits of participating in the ADS Plus Program and which emphasized the strong cultural value of familial bonds. In the video, the animation characters depict a father and daughter who utilize ADS services. We focused on the familial relationship, as this cultural value was expressed in the focus groups. The video is for use by ADS sites, and is available in English and Spanish. We are beta testing the feasibility, acceptability, and perceived utility of the video among key stakeholders in six ADS sites.

The relationship to fidelity and how fidelity was maintained

There are five core elements and five principles of the ADS Plus Program (Table 3). Fidelity to the intervention is maintained as long as these elements and principles are kept (i.e., the “essential ingredients” or components of the intervention; see Kirk, 2020). This allows for modifications to the peripheral aspects of the intervention, while remaining fidelity-consistent in our cultural modifications to the ADS Plus Program (Stirman et al., 2019). For example, our translation of the intervention material and inclusion of cultural elements into the adapted recruitment material was essential to increasing engagement of Hispanic/Latino caregivers in the study. Yet, these adaptations did not affect the intent or actual content delivered in the intervention. We preserved all core elements and principles of the programs needed for the intervention to be effective.

Table 3.

Core Principles and Elements for ADS Plus

Core principles	Core elements
Caregiver-centered and caregiver-directed	Skill enhancement to address care challenges
Customized and tailored to self-identified problem areas, preferences, and values	Taking care of self (caregiver)
Culturally sensitive and relevant	Ongoing validation and support
Learning through doing (problem solving and practicing)	Education
Small changes can have big effects (always a way to make daily life better)	Referral and linkage

Note: ADS = Adult Day Service.

Discussion

We highlight in this manuscript the processes used to culturally adapt the ADS Plus Program to increase relevance and acceptance among staff who deliver the interventions to encourage participation among Hispanic/Latino caregivers. Our process for adapting the intervention was guided by the three phases of the CAP model (Domenech-Rodriguez & Wieling, 2005; Domenech Rodríguez et al., 2011). We also documented these cultural adaptations using the FRAME. As suggested by Stirman et al. (2019), the focus on cultural adaptations allows for the explanation of content-level (i.e., whether content was tailored or removed) and contextual-level (i.e., whether training or education are modified) modifications to explicitly address the cultural elements, values, and preferences of clients and stakeholders. Our adaptations involved tailoring versus removals. The cultural adaptation methodology utilized in this study can be used to adapt care support programs for family caregivers from Hispanic/Latino heritages, and to evaluate effectiveness for race/ethnically diverse populations and in different contexts from the original efficacy testing phase.

The explicit examination of cultural aspects may address, in part, disparities in engaging in evidence-based interventions among Hispanic/Latino caregivers. In the current literature on dementia care interventions, there are few community-based research interventions or clinical trials that are tailored to fit the cultural needs of Hispanic/Latino caregivers and/or persons living with dementia. There are benefits of using models explicitly focused on culturally adapting interventions for Hispanic/Latino caregivers, as they are not only at increased risk for AD/ADRD but also the fastest growing racial/ethnic group for such. Due to cultural preferences and values, many Hispanic/Latino caregivers prefer to provide support for their family members with AD/ADRD at home and often do not utilize formal supportive services. Cultural elements that include familismo, personalismo, or respeto have been previously demonstrated to influence help-seeking behaviors and how Hispanic/Latino caregivers utilize supportive programs and services (Arévalo-Flechas et al., 2014; Llanque & Enriquez, 2012). These elements are consistent with the findings from our focus groups with ADS Plus interventionists who identified cultural values as important to include in recruitment materials and the need for additional recruitment formats (i.e., recruitment videos) to encourage participation in AD/ADRD research. The modification to content-level material is essential to increasing engagement among Hispanic/Latino caregivers, and tailored format delivery in the form of a recruitment video may be helpful in recruiting racial/ethnic caregivers into community-based research (Parker et al., 2022). Such modifications are aligned with the cultural values and preferences of the target population, yet did not affect the fidelity or delivery of the ADS Plus Program; the essential components/mechanisms of ADS Plus were maintained (Gitlin et al., 2019). Furthermore, these modifications are consistent with the end goal of both implementation science and cultural adaptation, which is to assure health equity by enabling evidence to be used by all those in need, including staff and families (Baumann et al., 2017; Cabassa & Baumann, 2013).

In the current study, the core principles and elements of ADS Plus resonated with the participants of the focus group. This is not surprising, as one of the ADS Plus core principles is to provide caregivers education and strategies tailored to their self-identified care challenges. This caregiver-centric approach is an essential principle of ADS Plus and, as such, can fit different cultural groups. The cultural modifications required for ADS Plus were content-level adaptations (Table 2), which largely consisted of tailored messaging in our recruitment materials and assessments to encourage optimal participation among Hispanic/Latino caregivers. Additional context-level adaptations were needed to assist the staff at participating ADS sites to deliver the intervention. These context-level modifications (i.e., modifications to training and intervention delivery) reflected the preferences of the staff.

The usefulness of utilizing the CAP model, in conjunction with the EVM, is that the elements delineated in these respective models serve to culturally center a given intervention. The benefit of making culture the center of an intervention, and cultural elements described in such models, advances both the ecological validity and external validity of an intervention during implementation efforts. Interestingly, both models were originally developed for Hispanic populations. Although these models offer guidance to adapt an intervention, it is critical for implementation science to highlight the role of culture and cultural adaptation throughout the intervention design process. As scholars have advocated for the adoption of an implementation science lens at the very beginning of intervention design and testing (Gitlin & Czaja, 2015; Gitlin et al., 2020), similar attention to cultural considerations and a priori adaptations are also required to enhance and expedite the scalability and dissemination/implementation of evidence-based gerontological/geriatric/dementia care interventions, respectively. Stirman et al. (2019) highlight the importance of culturally modifying evidence-based programs, yet the framework does not describe ways in which this process occurs; rather it offers a systematic approach to document adaptations. Additional research is needed to advance the science of culturally informed dementia interventions, including understanding elements that need to be “culturally adapted.” In other words, efficacy testing alone is insufficient in assuring the reach, acceptability, and utility of interventions and their effectiveness for diverse communities. Developing and refining evaluation methods to determine the effectiveness of cultural adaptation are thus crucial to advance science in this area.

The utility of the current study is the use of CAP and FRAME to guide and document the adaptation of ADS Plus. These processes have yet to be described in existing translational efforts of geriatric interventions overall and specifically in dementia care and are necessary to guide future implementation science work in these areas. To address the disparities in dementia care access and outcomes and to provide equity in research for caregivers and persons living with dementia, it is essential to consider the integration of cultural adaptation and implementation science. Furthermore, it is critical to develop more methodologies to delineate these processes. If the field continues as it is currently, we will not have a firm sense of (a) what, when, and for whom adaptations are made; and (b) whether such adaptation details are linked with the effectiveness for culturally adapted programs. These are large gaps in the literature that continue to promote the research to practice chasm. Our case study illustrates a process for culturally adapting an existing intervention to extending the reach and utility of ADS Plus.

Considerations for Cultural Adaptations to Dementia Care Supports

Funding over and above intervention development and testing is needed to culturally adapt interventions. Key infrastructure and budgetary considerations include translation services and certified language interviewer and other staff to supervise the fidelity of adapted intervention material and deliver the program. These additional supports can also ensure that modifications reflect the cultural values and preferences of a targeted population. Developing the staffing who are in language concordance and have familiarity with the cultural values, attitudes, and norms of the intended recipiences is critical along with the appropriate supervisory structure to assure fidelity.

There are many adaptations that may be necessary in the content and context of an intervention to fit the cultural preferences of a target population. Cultural experts or stakeholders, who may reside outside of/external to an academic intervention development team, require consultation to ensure modifications reflect appropriate cultural nuance. Such processes require equitable decision-making in intervention development, adaptation, delivery, and eventual implementation (Minkler et al., 2017). Commensurate compensation and recognition for external experts’ cultural knowledge are necessary for their provision of wisdom and insight when enhancing the fit of the intervention. It is also critical that the intervention material is accessible and acceptable to the intended recipients. Some key considerations are the use of preferred language, cultural sayings, literacy level, and alternative forms of content delivery to ensure optimal engagement.

Limitations

This study describes and documents the processes used to culturally adapt an evidence-based intervention for Hispanic/Latino caregivers and staff. There are several limitations. We were unable to capture cultural preferences or values from Hispanic/Latino caregivers themselves; our insights on cultural attitudes, values, and norms were ascertained from ADS Plus interventionists. Although the interventionists self-identify as Hispanic/Latino and are staff at sites that serve a high proportion of Hispanic/Latino caregivers, their cultural values and norms might not reflect those of the families they serve. Additionally, the ADS Plus study is currently ongoing, and as such the effects of these cultural adaptations are yet to be determined. We are collecting ongoing interviews with the staff and caregivers to determine the acceptability of the adapted material and if they are effective in engaging more participants in the study. Future studies should identify the cultural needs of Hispanic/Latino caregivers and persons living with dementia in addition to those of staff that serve this population to ensure that interventions provide a cultural fit for their direct recipients.

Conclusion

As supportive interventions for people living with dementia, their caregivers, or in other aging-relevant care contexts are developed and implemented into real-world settings, inclusion of cultural elements may be useful when encouraging participation across cultural contexts. In addition, future studies should fully consider cultural elements throughout the intervention design, dissemination, and implementation process. Scholarly advances, models, and tools available in both implementation science and cultural adaptation can help to advance this work, as evident in our ongoing hybrid effectiveness/implementation trial of ADS Plus and our effort to adapt the program for Hispanic/Latino caregivers and sites. Such efforts should also guide future intervention testing, evaluation, and dissemination/implementation in gerontology writ large.

Funding

This work was funded by the National Institute on Aging at the National Institutes of Health (R01AG049692; K01AG066812 to L. J. Parker).

Conflict of Interest

None declared.