STAR-Caregivers Virtual Training and Follow-up: a cultural adaptation for Latino caregivers of people with dementia

Abstract

STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is an evidence-based intervention that teaches family caregivers how to manage behavioral and psychological symptoms of dementia. The study objective was to identify what adaptations to STAR-VTF are needed to improve cultural relevance for Latino caregivers. A qualitative research study was conducted that interviewed Spanish- and English-speaking caregivers of people with dementia who self-identify as Hispanic/Latino (N = 30) and healthcare and social service providers of older Latino clients and/or Latino family caregivers (N = 14). Thematic analysis methods were applied to code and analyze interview transcripts. The codebook was theory-driven, relying mainly on codes that directly represented components of the Cultural Treatment Adaptation Framework. Based on the content of the excerpts, the codes were sorted into themes that represented opportunities to culturally adapt STAR-VTF. Three themes were identified: (i) there was a need to increase awareness about dementia and decrease stigma; (ii) semantics mattered as certain words and phrases could be stigmatizing, offensive, or culturally inappropriate; and (iii) there was a need to incorporate into program materials the traditional family structure and nature of caregiving in Latino families. Based on findings, adaptations were performed on STAR-VTF that included expanding content to improve understanding of dementia, revising language that was viewed as problematic, and adding cultural examples to reflect the range of family involvement in caring for people living with dementia and multigenerational living. Findings from this qualitative research study advance understanding of the Latino caregiver experience and how to modify programs to better serve their needs.

A known effective strategy to teach family caregivers how to manage behavioral and psychological symptoms of dementia requires cultural adaptation for Latino family caregivers.

Implications.

Practice: Healthcare and social service providers can: offer more education about dementia, inform families about behavioral treatments for dementia symptoms, avoid negative words when describing dementia symptoms and the adverse impact of caregiving, and consider the family unit instead of only the primary caregiver.

Policy: There is a need for increased investment in community-based respite programs for low-income families and educational outreach to Latino families about the availability, eligibility, and enrollment in these programs.

Research: Future research must further uncover ways that evidence-based behavioral interventions need to be adapted to increase their cultural and linguistic appropriateness in populations of Latino caregivers.

BACKGROUND

In the USA, Latino adults are 1.5 more likely to develop Alzheimer’s disease and Alzheimer’s disease-related dementias compared with non-Latino White adults [1]. The disparity is due in large part to the health conditions (e.g., cardiovascular disease, diabetes, high blood pressure, obesity) and socioeconomic factors (e.g., chronic exposure to economic and social adversity, lower levels and quality of education, and discrimination) that are more prevalent in Latino populations and that are associated with cognitive decline [1, 2]. By 2060, the number of Latino adults living with dementia in the USA is projected to increase more than 9-fold from 379,000 in 2012 to 3.5 million by 2060—a growth of 832% [3]. The rise in dementia cases among older Latino adults ages 65 years and over will lead to a significant increase in the number of Latinos caring for family members living with dementia.

Family members are the largest source of care for people living with dementia and face overwhelming challenges without adequate education, skills training, and support [4]. Caregiving is complicated by the behavioral and psychological symptoms that most people living with dementia experience [5]. All caregivers are at high risk for adverse psychological effects, including the perception that caregiving is stressful and burdensome, symptoms of depression and anxiety, clinically diagnosed depression, and impaired quality of life [4]. Latino caregivers, however, experience higher levels of depression and stress compared with caregivers from other racial and ethnic groups [6, 7]. Latino caregivers are significantly more likely than non-Latino White caregivers to provide intensive informal care (≥200 hr of informal care per month) [8] and help with a greater number of Activities of Daily Living (2.6 vs. 1.9) than non-Latino White caregivers [9]. Furthermore, Latino adults living with dementia suffer higher levels of behavioral and psychological symptoms—a strong predictor in caregiver stress, burden, and depression [10–12]—than non-Latino White adults living with dementia [13]. Yet, Latino caregivers report unmet needs for healthcare services in regards to information about dementia and symptoms, assistance in managing symptoms, and mental health support for caregivers [14]. Without the knowledge and skills to manage behavioral and psychological symptoms, caregivers are at an increased risk of stress, burden, and depression—risk factors associated with higher rates of emergency department use among people living with dementia [15].

STAR-Caregivers is an in-home intervention that involves training health professionals to teach caregivers strategies to manage behavioral and psychological symptoms of dementia [16, 17]. Caregivers learn to monitor symptoms, identify possible environmental or interpersonal triggers, and develop effective responses. They also learn strategies for communicating with people living with dementia in a way that supports positive affect and prevents or minimizes problems, increasing pleasant events to improve mood, and improving the support caregivers receive from informal and formal networks. In a randomized trial, STAR-Caregivers reduced frequency and severity of behavioral and psychological symptoms, as well as improved burden, depression, and reactivity to symptoms in caregivers [16]. Recently, STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) was developed to facilitate large-scale implementation of the intervention in clinical settings and is being tested in an ongoing trial at Kaiser Permanente Washington. For 6–8 weeks, caregivers complete six online training modules asynchronously and have six 30-min weekly telephone check-ins with a coach (i.e., master’s-level social worker or mental health counselor). In addition, support from coaches is provided, as needed, via secure messaging in the Kaiser Permanente Washington patient portal for up to 6 months. The virtual adaptation of the in-home intervention was timely given the COVID-19 pandemic, which shed light on the urgent need for digital health strategies that offer support virtually [18]. Many social and healthcare services for older adults and their family caregivers shifted from in-person to virtual platforms to expand reach during the COVID-19 pandemic [19]. Neither STAR-Caregivers nor its virtual adaptation, however, were developed with explicit consideration of the experience of Latinos providing care to a family member living with dementia.

A 2022 systematic review and meta-analysis found that nonpharmacologic interventions to support Latino caregivers of people living with dementia improve depressive symptoms and caregiver burden [20]. However, more intervention research is needed that has a greater geographic spread (to include rural regions of the USA where there is less access to resources), that leverages technology to deliver interventions, and that tests culturally appropriate interventions [20, 21]. When developing culturally appropriate interventions, it is necessary to consider the cultural values and beliefs that Latinos embrace, including spirituality (religion as well as folk beliefs and practices), gender norms, familismo (familial support, familial interconnectedness, familial honor, and family obligations), and interdependence/collectivism (family or group needs being far more important than individual needs) [22]. Others have performed cultural adaptations of interventions for Latino populations [23, 24], but there is minimal research on the cultural adaptation of interventions specifically targeting Latino caregivers of people living with dementia. The objective of our study was to identify adaptations needed to improve the cultural relevance of STAR-VTF for Latino caregivers and to perform preliminary adaptations for pilot testing in a future study.

METHODS

Our methods are guided by Barrera and Castro’s framework for the cultural adaptation of evidence-based interventions [25]. The framework consists of the following stages: (i) gathering information to identify ideas about needed adaptations, (ii) conducting preliminary adaptations based on these ideas, (iii) conducting pilot studies of the preliminary adaptations, and (iv) refining adaptations based on results from pilot studies. The present study reports on Stages 1 and 2. Within Stage 1, we applied the Cultural Treatment Adaptation Framework to guide data collection and analysis [26].

We conducted semistructured qualitative interviews in Washington State with Spanish- and English-speaking Latino caregivers of people living with dementia (N = 30) and with providers of healthcare and social services (N = 14) who were experienced working directly with Latinos. Our aim was to identify sources of mismatch between STAR-VTF and Latino caregivers. We used findings from the qualitative interviews to perform preliminary adaptations of STAR-VTF. Additional details about our research design and methods are available in the Appendix.

Ethical statement

The institutional review boards at the Kaiser Permanente Washington and University of Washington approved the study. Study participants provided written or verbal informed consent.

Description of STAR-VTF modules

In STAR-VTF, caregivers complete one online training module each week (Table 1). They access the modules via a website hosted on the Kaiser Permanente Washington learning management system. The core components of STAR-VTF are: understanding dementia, strategies for effective communication, activators–behaviors–consequences problem-solving, pleasant event schedules, and caregiver support. The modules use text, visual aids, and voiceover. They integrate activities that caregivers complete using a printed workbook. Modules take 20–45 min to complete.

Table 1.

Topic of STAR-VTF online training modules

Module	Topic of STAR-VTF online training module
1	Understanding dementia, realistic expectations about behavioral treatment for symptoms of dementia, and strategies for effective communication
2	Activators–behaviors–consequences approach to problem-solving, including rationale and development of a problem-solving plan for symptoms caregivers want to target
3	Review of problem-solving plan
4	Development of pleasant events schedule to manage negative thinking
5	Review of problem-solving plan and pleasant events schedule
6	Caregiver support strategies for coping with caregiving and maintaining gains

STAR-VTF STAR-Caregivers Virtual Training and Follow-up.

Participant selection

We used criterion sampling to select study participants [27]. Caregivers were eligible if they: identified as Hispanic/Latino; were 21 years or older; were a child, spouse/partner, or close friend of a person diagnosed with dementia; lived with the person diagnosed with dementia (or within five miles); and provided at least 8 hr of care per week. We used three strategies to recruit caregivers. First, we identified potential participants from the electronic health record systems at Kaiser Permanente Washington and UW Medicine. Second, we distributed flyers in Spanish and English at a specialty clinic of UW Medicine, a primary care research network, the Alzheimer’s Association Washington State Chapter, and tiendas (food stores located in Latino communities). Third, we conducted media appearances (i.e., local Spanish and English radio stations and newspaper) to discuss the impact of dementia on Latinos and to advertise the study.

Healthcare and social service providers were eligible if they reported having extensive experience working directly with Latinos, including older adults, people living with dementia, and family caregivers. We identified providers from professional networks, web searches of providers for people living with dementia and their families, and referrals from other providers. The study staff member emailed providers to explain the purpose of the study and invite participation.

The study staff member screened people who expressed interest in study participation and scheduled interviews if they met the eligibility criteria. Caregivers received $100 for study participation; providers were not compensated.

Data collection and processing

A bilingual–bicultural staff member trained in qualitative research methods conducted interviews between February 2020 and March 2021. Interviews were conducted in-person or virtually and in Spanish or English, depending on the preference of individual study participants. The duration of interviews was 30–60 min. Interviews were audio recorded and transcribed verbatim by a professional service.

The staff member used semistructured interview guides (Appendix). To develop the interview guides, we reviewed: (i) STAR-VTF online training modules, (ii) Cultural Treatment Adaptation Framework [26], and (iii) literature on the experiences of Latino caregivers of people living with dementia and of caregiver intervention developers targeting Latinos [21, 28–34]. After comparing the module content to what we had learned in the literature, we identified potential areas of “nonfit” between STAR-VTF and Latino caregivers and placed them within the context of the Cultural Treatment Adaptation Framework. The interview guide for caregivers was structured to ask questions about these specific areas. For example, a review of Latino caregiver interventions suggested that intervention developers consider the values that Latino populations endorse (e.g., familism) [21]. When we reviewed the STAR-VTF intervention content, we determined that there was minimal content regarding familial collaboration and sharing of the caregiver role. For that reason, the interview guide contained questions to understand the role of other family members in providing care. The interview guide for providers asked similar types of questions. We also asked what aspects of their work were the most challenging and had the greatest impact on Latinos living with dementia and their caregivers. At the end of the semistructured interviews, the staff member verbally administered a structured survey to participants to obtain sociodemographic characteristics.

We assessed sample size sufficiency based on the richness and volume of the data [35]. The research team decided to stop recruitment after interviewing 30 caregivers and 14 providers because the data that had been collected was considerable and detailed. In addition, a high degree of consensus had begun to emerge among study participants about how STAR-VTF would need to be culturally adapted. The research team determined that the number of interviews completed up to that point was sufficient to satisfy the objective of the study.

Data analysis

We analyzed the transcripts in their original language (Spanish or English) using the thematic analysis methods described by Braun and Clarke [36]. First, the first author read all the transcripts and wrote brief notes about what was in the data. Second, the first author began developing an initial codebook. The codes were “theory-driven” in that we approached the transcripts with specific topics in mind that we wished to code around [36]. That is, the codebook relied mainly on codes that directly represented the components of the Cultural Treatment Adaptation Framework [26]. For example, a main code called “Treatment Delivery” included the subcodes “Materials and Semantics,” “Cultural Examples and Themes,” and “Therapeutic Framework.” Third, the first and second authors independently coded transcripts and met to reconcile coding disagreements, clarify code names and definitions, and add codes that emerged from the data. When the codebook was finalized, the first and second authors coded the remainder of the transcripts independently. We used Dedoose version 8.1.8 to manage the coding process. Fourth, the first author collated all the coded excerpts in order to begin searching for themes that represented opportunities to culturally adapt STAR-VTF. After rereading all of the excerpts within each code, the first author began sorting the various codes into themes based on the content of the coded excerpts. During this process, the first author considered the relationship among codes, among themes, and among different levels within themes. This resulted in a collection of candidate themes and the relevant excerpts for each theme. Finally, we reviewed the candidate themes to ensure that excerpts within themes cohered and that there was a clear distinction among themes. To do this, the first author read all the collated excerpts for each theme and refined themes as needed. Afterwards, members of the research team reviewed the themes and provided additional input to produce the final themes. Informed by these final themes, we performed preliminary adaptations to STAR-VTF for pilot testing in the future.

RESULTS

Tables 2 and 3 provide the characteristics of caregiver and provider study participants, respectively. Two-thirds of Latino caregivers identified specifically as Mexican, Mexican American, or Chicano/a (20/30; 67%) and over half preferred to speak Spanish (18/30; 60%). Findings of the Latino caregiver experience are presented below, followed by the cultural and linguistic adaptations we performed in response to these findings. Table 4 summarizes the adaptations and maps them to the relevant components of the Cultural Treatment Adaptation Framework.

Table 2.

Characteristics of family caregivers

Characteristic	Family caregivers (N = 30)
Age (years), mean (SD)	54.5 (13)
Women, n (%)	20 (67)
Hispanic, Latino/a, or Spanish origin, n (%)
Mexican/Mexican American/Chicano/a	20 (67)
Peruvian	3 (10)
Puerto Rican	2 (7)
Othera	6 (20)
Employed, n (%)	16 (53)
Educational attainment
Less than high school	1 (3)
Completed high school	9 (30)
Vocational or technical training	4 (13)
Some college	4 (13)
College graduate	7 (23)
Postgraduate	5 (17)
Language preference
English	12 (40)
Spanish	18 (60)
Relationship to person living with dementia
Spouse or partner	8 (27)
Adult child	19 (63)
Other relative or friend	3 (10)
Care provided per week (hr), n (%)
5–14	3 (10)
15–20	4 (13)
21–34	2 (7)
35 or more	21 (70)
Household size, mean (SD)	3.1 (1.6)
People living in home (relationship to caregiver), n (%)
Spouse/partner	19 (63)
Adult child	11 (37)
Small child or grandchild	9 (30)
Relative	9 (30)
Friends/nonrelatives	3 (10)
Devices owned, n (%)
Smartphone	26 (87)
Tablet	16 (53)
Laptop	16 (53)
Computer	14 (47)
Owns any device, n (%)	29 (97)

^aOther: Ecuadorian (n = 1), Spanish (n = 1), Columbian (n = 1), Guatemalan (n = 1), Salvadorian (n = 1), and Argentinian (n = 1).

Table 3.

Characteristics of providers

Characteristic	Providers (N = 14)
Age (years), mean (SD)	47.6 (8.97)
Women, n (%)	13 (93)
Hispanic, Latino/a, or Spanish origin, n (%)	10 (71)
Spanish fluency
Beginner	2 (17)
Intermediate	0 (0)
Advanced	4 (33)
Native	6 (50)
Provider type
Health educator or case manager	9 (64)
Social worker or counselor	3 (21)
Clinician	2 (14)
Organization type
Community-based social service	6 (43)
Healthcare delivery	5 (36)
Research institution	3 (21)
Time in role (years), mean (SD)	6.6 (6)

Table 4.

Summary of adaptations to STAR-VTF

Cultural Treatment Adaptation Framework [26]	Reason(s) for adaptation	Adaptations to STAR-VTF
Core Modification	• Belief that dementia is inevitable in older age • Belief that symptoms are intentional or due to a mental health disorder • Unaware physicians can help with symptom management	• Expanded content on links between dementia and behavior, causes of dementia, how dementia affects a person’s ability to do daily tasks, and how changes in behavior are progressive and unintentional • Directly stated that dementia is a brain disease and not normal aging, provided examples of typical age-related changes versus signs of dementia, and explained how people with dementia experience symptoms that are out of their control • Acknowledged reluctance to speak with healthcare providers about symptoms, but stated that help is available
Treatment Delivery: Materials and Semantics	• Caregivers prefer using “memory loss” rather than “Alzheimer’s disease” or “dementia” • Caregivers dislike program materials describing symptoms as “challenging,” “problematic,” and “bothersome” • Caregivers experienced adverse effects on their well-being, but disliked program materials describing the caregiving situation as a “burden” • Caregivers rarely identified with the label “caregiver”	Revised language across all modules to eliminate words or phrases that could be stigmatizing, offensive, or culturally inappropriate
Treatment Delivery: Cultural Examples and Themes	• Caregivers rarely used formal services because it was prohibitively expensive • Most caregivers received extensive, unpaid support from family members and friends • Most caregivers lived in multigenerational households or in close proximity to others, which facilitated help with caregiving	• Modified content to reflect the range of family involvement in caring for people living with dementia • Deemphasized use of formal services to support caregivers (e.g., hiring a professional for respite care) • Included examples of families in multigenerational homes

STAR-VTF STAR-Caregivers Virtual Training and Follow-up.

Theme 1: Increase awareness about dementia and decrease stigma

Many caregivers expressed the belief that dementia is inevitable in older age. According to caregivers, healthcare providers’ explanations about the disease and its causes were brief. The takeaway was that dementia is caused by old age. This led caregivers to believe that dementia is unavoidable. One Spanish-speaking caregiver assumed her mother was aging with a healthy brain as a result of being a lifelong, avid reader. She was surprised when her mother was diagnosed with dementia at the age of 96. Thinking back on that time, the caregiver said, “We found out that dementia was inevitable because of age, that eventually, this was going to happen, and that, generally-speaking, there was nothing we could have done. It was a matter of age.” A bilingual–bicultural health educator said:

We have providers who do a great job explaining and then we have others who don’t do a great job explaining, and so sometimes you see families not understanding the ­illness… We tend to give them summaries of information, and sometimes that can be overwhelming.

Most social service providers reported spending a significant amount of time providing education to Latino families after a diagnosis, including clarifying that old age does not directly cause dementia.

Moreover, caregivers shared that healthcare providers did not inform them that people living with dementia can experience significant changes in mood and behavior. One Spanish-speaking caregiver said, “The doctor just told me that it looks like my mom has early stages of Alzheimer’s disease, that there’s no treatment or cure, and to just keep an eye on her.” Like other caregivers, she attributed behavioral and psychological symptoms to personality rather than to the disease. This belief negatively affected caregivers—they described feeling hurt, angry, and resentful of their family member’s behavior and verbal expressions. Perceptions about symptoms were different among caregivers who understood that their family member could not control what they did or said. For example, one caregiver used to attribute her mother’s verbal aggression to a longstanding personality (“she has always been stubborn”) until learning that it was a symptom of dementia. The caregiver said:

At first, it was like, “Mom, what is wrong with you?” But now we realize she’s in pain, and she’s scared, and so that helps us look at her differently. Otherwise, you just take what she says as an attack or unreasonable or whatever, and now it’s easier. And still, sometimes, you still get mad at her, but it’s easier to forgive or overlook her words and her behavior.

Providers said that stigma prevented Latino families from speaking up about symptoms. A bilingual–bicultural clinician described how caregivers felt embarrassed about the symptoms they observed in their family member. The provider said, “If mom is hallucinating or if mom is waking up in the middle of the night confused, there’s definitely some hesitation to talk with the provider about those issues.” According to the provider, this stemmed from families assuming symptoms were due to a mental health disorder. Caregivers were reluctant to share what was happening because they did not want to embarrass their family member. Latino caregivers were more willing to discuss symptoms they observed after building rapport with healthcare providers.

Another reason preventing caregivers from discussing symptoms during clinic visits was not knowing that healthcare providers could help with symptom management. One caregiver described struggling with her mother who was often argumentative and verbally aggressive. Although it was frustrating for the caregiver, she had not talked to a healthcare provider about the symptoms. The caregiver said:

I hadn’t really thought about talking with the doctor… It just seems like I don’t know what medically they could do. It seems like more of a thing that maybe sort of a therapist or something could consult. I mean, maybe that’s wrong. But that’s kind of the perception I’ve been operating under I guess.

Some caregivers reported utilizing counseling services to deal with changes in their family member’s behavior and personality. For example, one caregiver detailed how her husband of 30 years started to be emotionally and physically abusive 3 years into his diagnosis. The caregiver perceived these changes to mean he was unhappy in the marriage and sought couples’ therapy as an attempt to improve the relationship. In addition to therapy, some caregivers believed herbal remedies (e.g., teas, drops, vitamins) and prayer could delay the progression of dementia and control symptoms.

Given these findings, our first adaptation focused on expanding the existing STAR-VTF content to improve understanding of dementia, symptoms, and treatment to manage symptoms. The first online training module included a section titled “Overview of Dementia.” In just 7 min, it covered the links between dementia and behavior, causes of dementia, how dementia affects a person’s ability to do daily tasks, and how changes in behavior are progressive and unintentional. We believed it would be valuable to emphasize the importance of these topics by spending more time on them. Thus, we expanded the content and directly stated that dementia is not normal aging, provided examples of typical age-related changes versus signs of dementia, directly stated that dementia is a brain disease, and explained how people with dementia experience symptoms that are out of their control. The new content acknowledges that families may feel reluctant to talk with healthcare providers about symptoms, but that help is available through evidence-based treatments such as STAR-VTF.

Theme 2: Eliminate stigmatizing, offensive, and culturally inappropriate language

A common belief among Latino caregivers was that dementia is a mental health disorder. Specifically, that if a person has dementia, it must mean they are loco/a (crazy). For this reason, there was stigma associated with using the terms “Alzheimer’s disease” and “dementia” to describe their family member’s condition. Instead, caregivers preferred using the term pérdida de la memoria (memory loss). A health educator described it this way:

I know that there is some stigma around dementia. Like, “Maybe there’s something wrong in their head. Maybe there will be something wrong with my head.” So, the word “dementia,” as it is, it’s—yeah, it’s not something that is mentioned. It’s more like, “Oh, she just forgets things. They just forget stuff,” even though—or even when people have a diagnosis, they don’t use the word that frequently.

This sentiment was shared by multiple caregivers. For example, one Spanish-speaking caregiver had a mother in the early stages of Alzheimer’s disease who was mostly experiencing memory loss that disrupted daily life. According to the caregiver, the symptoms were not yet severe enough to warrant calling her mother’s condition “Alzheimer’s disease” or “dementia.” She preferred waiting to begin using those terms because of the negative connotations. The caregiver said:

At this moment, I say that it’s “memory loss” because that’s basically what I’m seeing. The doctors say “dementia” but I think right now she just has memory loss. Because when we hear dementia, we usually think, “Those people are crazy, they’re demented, they don’t know what they’re doing.” My mom still knows what she’s doing. She forgets, but she knows what she’s doing.

Furthermore, some caregivers voiced concerns with program materials describing symptoms as “challenging,” “problematic,” and “bothersome” for caregivers. These words were interpreted as program materials describing the ­caregiving situation (as opposed to the symptoms) as challenging, problematic, and bothersome. For example, a 91-year-old Latino stated that his wife with dementia often directed verbal expressions of anger at him. However, he disapproved of program materials referring to his wife’s symptoms as “challenging.” The term implied that he perceived the caregiving situation to be a challenge. The caregiver said, “No, I don’t think challenging. No, I wouldn’t accept that. I accepted her sickness, and I accept it more and more. So definitely not a challenge.” The caregiver felt it would be offensive to say it was a “challenging” symptom because of the progress he had made in accepting the diagnosis.

There was also strong opposition to program materials labeling the caregiving situation as a “burden” for caregivers. Through the stories that caregivers shared, it was clear that caregiving adversely affected their well-being. Multiple providers, however, said that we risked offending Latinos by using phrases such as “caregiver burden” when describing the negative impacts of caregiving. According to a bilingual–bicultural health educator, the phrase “caregiver burden” is at odds with the Latino cultural value of familism. Her Latino clients believe they have a responsibility to provide care to their family member with dementia, and “caregiver burden” implies that caregiving is an unwanted obligation that has been imposed on them. She said, “Caregiving is a responsibility, not obligation. There’s no question about whether to take care of your parents.” Similarly, another bilingual–bicultural health educator stated:

It’s not a role that they feel like it’s a job. It’s part of who we are as a family that we take care of each other. People who have dementia or are entering that phase, a lot of it is that our parents are getting older and so there’s always a family member or several family members to take on that responsibility to be the caretakers. I always have sensed that it’s who we are to take care of our family. I think that if we had to develop a program, we need to consider that family is very important and it’s not a job; it’s what we do.

Providers recognized it was important to address the adverse impacts of caregiving. However, because of the family-centered culture, they discouraged programs targeting Latinos from explicitly using the word “burden” in reference to the caregiving experience.

Finally, Latino caregivers rarely identified with the label “caregiver.” When we used the word “caregiver” (cuidador), some thought we were referring to a formal caregiver who does the work as a paid profession. Others thought we were referring to an informal caregiver who is paid to provide care for their ill or aging family member. The latter situation was viewed unfavorably by a Latino who indicated needing to be cautious about receiving public funds. After we described STAR-VTF and its purpose of providing virtual support to “family caregivers,” the Spanish-speaking Latino providing care to his mother with dementia responded as follows:

I’m not a caregiver, I’m her son. I don’t work for the government. People who do that need to be very careful. There are children and siblings who go through the process of becoming caregivers, but not me. I don’t want to use government funding, that’s why I’m not a caregiver.

Given these findings, our second category of adaptations focused on revising the language used across all modules. First, we minimized use of “Alzheimer’s disease” and “dementia,” replacing with “memory loss” where appropriate. The exception was the first online training module we expanded to improve caregivers’ understanding of dementia. Second, we eliminated any negative descriptions of symptoms and caregivers’ reactions to the symptoms. For example, rather than asking how much a “behavior challenge” has “bothered or upset” caregivers, we simply asked how much the “behavior” has “affected” them. Third, we eliminated the word “burden” in reference to the caregiving experience. For example, a module on coping with caregiving stated, “Sharing the burden of caregiving with others can boost your health.” We revised the statement to, “Having other people help take care for your family member is good for your health.” Finally, we replaced the word “caregiver” with descriptive phrases, such as “those who care for people with memory loss” (quienes cuidan personas con pérdida de la memoria).

Theme 3: Incorporate family structure and the nature of caregiving in Latino families

Many Latino caregivers would accept help from formal respite services (e.g., adult daycares, in-home care), but viewed the cost of these services as prohibitively expensive. Over half of caregivers were employed outside the home, but still, they did not earn enough to afford paying someone to provide care to their family member. A Spanish-speaking caregiver for her husband with dementia explained, “There is no money to pay someone. It’s extremely expensive. We have a very low income. It’s barely enough to get us by.” Some caregivers suggested that educational materials encouraging caregivers to utilize formal respite services were out of touch with the financial stress experienced by low-income families. Another caregiver for her husband with dementia said, “That’s great for a perfect world or somebody who probably has a lot of money. It doesn’t work that way for us.”

Instead, most caregivers described receiving an extensive level of support from their own family members and friends. They tended to live in close physical proximity to family members and friends whom they relied on to help with caregiving responsibilities. There were several multigenerational households in which the person with dementia was living with their spouse, adult children, and grandchildren. Family members and friends helped with a number of caregiving-related tasks, including providing respite care, providing emotional support, taking the person living with dementia to healthcare appointments, and looking for information on the Internet about dementia and caregiving. In some multigenerational homes, those who worked during the day would take over caregiving responsibilities in the evenings. When there was respite care available from family members and friends, caregivers engaged in pleasant activities. One caregiver for her mother with dementia described how much she valued help from her adult daughter (they lived together), daughter-in-law, and friend. The caregiver stated:

My daughter and daughter-in-law are like angels to her [person living with dementia]. What I love to do is garden and sew, so I sew in the evenings and garden. In the evenings, if I just want to sit out in the garden for a couple of hours, my daughter and daughter-in-law are very good. So, they take her for drives, or they take her for walks. So that’s great support right there… And every now and then, I have a friend who I have asked, “Hey, can you sit for a couple of hours?”

Grandchildren were also involved by keeping an eye on the person living with dementia while caregivers attended to household and personal tasks (e.g., taking a shower). In addition, grandchildren were a source of emotional support for the person living with dementia. For example, a Spanish-speaking Latina told a story about her granddaughter “consoling and hugging” her great-grandmother living with dementia during episodes of sadness and crying.

Given these findings, our final category of adaptations focused on modifying content to reflect the range of family involvement in caring for Latinos living with dementia and multigenerational living. The following is an example. The original second module provided an example of a caregiver, Mr. B, who had developed a plan to address the challenge of his wife wandering and getting lost in their neighborhood. Mr. B said this behavior would happen when he was in the basement doing laundry. When describing who else was around when the behavior happened, Mr. B wrote on his plan, “Just the two of us. There’s nobody helping me to care for her.” Mr. B brainstormed a list of ideas for how to change activators or consequences to reduce the behavior, including “hiring somebody to keep an eye on her.” None of the ideas Mr. B brainstormed involved other family members or friends. For the adaptation, we changed the living situation such that the caregiver and his wife lived with their daughter and grandchildren. When describing who else was around when the behavior happened, the caregiver said, “Just the two of us. My daughter was working and the kids were at school.” In the list of potential solutions, the example replaced “hiring somebody to keep an eye on her” with “doing the laundry when my daughter or grandchildren are home and can keep an eye on her.”

DISCUSSION

Through qualitative interviews with Latino caregivers of people living with dementia and healthcare and social service providers, we identified themes that lead to adaptations needed to improve the cultural relevance of STAR-VTF. First, there was a need to increase awareness about dementia and decrease stigma. Many Latino caregivers expressed the belief that dementia is inevitable in older age and perceived changes in their family member’s behavior and mood as intentional. Not knowing that healthcare providers can help with symptom management, coupled with stigma in the community regarding dementia, prevented caregivers from discussing behavioral and psychological symptoms with healthcare providers. Second, semantics matter as certain words and phrases could be stigmatizing, offensive, or culturally inappropriate (e.g., describing caregiving as a “burden”). Latino caregivers were concerned about the use of negative language to describe their family member’s symptoms and the caregiving experience, preferred to use “memory loss” instead of “Alzheimer’s disease” or “dementia” to describe their family member’s condition, and rarely identified with the label “caregiver.” Finally, there was a need to incorporate the traditional family structure and nature of caregiving in Latino families. Most Latino caregivers reported living in close physical proximity to family members and friends who they relied on to help with caregiving-related tasks. Financial stress made professional care inaccessible for the majority of families.

Based on the study findings, we performed the following preliminary adaptations to the content of the STAR-VTF online training modules: (i) expanded existing content to improve caregivers’ understanding of dementia and symptoms, (ii) revised words and phrases that Latino caregivers and providers viewed as problematic, and (iii) added cultural examples in order to reflect the range of family involvement in caring for people living with dementia and multigenerational living, with less emphasis on using formal care. In addition, we improved the readability of the content to ensure it is accessible for individuals with a wide range of educational attainment. Finally, we obtained certified Spanish translations of the culturally adapted content. The preliminary adaptations of STAR-VTF are being tested in an ongoing pilot trial with Spanish- and English Latino caregivers of people living with dementia [37].

Our finding that stigma can prevent Latino caregivers from seeking help from healthcare providers to manage behavioral and psychological symptoms offers a new insight that has not been previously reported in the literature. And while it has been reported that Latinos do not describe providing care to a family member with dementia as a “burden” [38], our finding that Latinos would be strongly opposed to program materials using this word and other negative language to describe the adverse impacts of dementia has not been explicitly reported in prior studies. Other aspects of our findings have been reported in previous studies focused on Latino caregivers of people ­living with dementia [28, 30–32]. Latino caregivers are often unaware of what treatments and services are available, have experienced unpleasant encounters with healthcare providers when seeking care for their family members living with dementia, and may feel shame or embarrassment about their family members’ unusual symptoms. Furthermore, others have similarly found that “caregiver” and “caregiving” are often unfamiliar words in the Spanish language and in Latino culture [30, 39].

Few studies on care interventions for people living with dementia and their family caregivers have included a sizable number of participants from racial and ethnic minority groups [40, 41]. Therefore, it is unknown whether evidence-based care interventions are culturally appropriate or how they can be successfully adapted for Latino people living with dementia and their family caregivers. Our study addresses this gap by identifying adaptations that can teach Latino caregivers, in a culturally appropriate way, how to manage symptoms of dementia. The findings advance the development of an existing evidence-based caregiver ­intervention to be better aligned with Latino cultural values, beliefs, and practices. A review found that interventions adapted for specific cultural groups can be up to four times more effective than interventions designed for a general population [42]. A next step in our research will be to pilot test the adapted intervention and identify additional modifications needed to enhance the efficacy of the intervention [25]. In addition, our findings have broader implications for healthcare and social service providers focused on people living with dementia and caregivers. Language matters when they communicate with clients about the effects of dementia and adverse impact on caregivers. Certain words and phrases that are commonly used (e.g., ­“challenging,” “problematic,” “bothersome,” and similar words to describe symptoms of dementia) can be stigmatizing, offensive, and culturally inappropriate not only for Latinos, but for all groups. Our findings reinforce the importance of providers choosing words carefully, in a way that is respectful of older adults and family caregivers [43].

Our study has limitations worth noting. First, we recruited Latinos providing care to a family member with a diagnosis of Alzheimer’s disease or a related dementia. Underdiagnosis of dementia is common across all racial and ethnic groups, but Latino adults are significantly more likely than non-Latino White adults to be affected [44]. Excluding those who face structural barriers to a formal diagnosis limits the breadth of knowledge that can be gained about Latino families providing care to a person living with dementia. Second, the caregivers and providers we interviewed did not have direct experience with STAR-VTF. Their perceptions were based on descriptions that we provided during the interviews. Targeted feedback based on direct experience with the intervention could reveal additional opportunities for cultural adaptation.

CONCLUSION

This qualitative study advances our understanding of the Latino caregiver experience and how to modify behavioral interventions to better serve their needs. Based on the findings, we identified what adaptations are needed to improve the cultural appropriateness of STAR-VTF for Latino caregivers of people living with dementia. The practice implication of the findings is the need for healthcare and social service providers to: offer more education about dementia, inform Latino families about evidence-based behavioral treatments for dementia symptoms, avoid using negative words when describing dementia symptoms and the adverse impact of caregiving, and consider the family unit instead of only the primary caregiver of Latino people living with dementia. Study findings can also inform the cultural and linguistic adaptation of evidence-based behavioral programs targeting populations of Latino caregivers of people living with dementia. Future research is needed to uncover additional ways that these programs can be adapted to increase appropriateness for Latino caregivers.

Funding

This project was funded by the Agency for Healthcare Research and Quality (K12HS026369), Alzheimer’s Association (AARG-20-685260, M.R.), and the National Institute on Aging grant STAR Caregivers—Virtual Training and Follow-up (1R01AG061926-01, R.B.P.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality.

Compliance with Ethical Standards

Conflict of Interest: None declared.

Ethical Approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent: Informed consent was obtained from all individual participants included in the study.

Welfare of Animals: This article does not contain any studies with animals performed by any of the authors.

Transparency Statements: The study and analysis plan were not formally registered. Deidentified data are not available in a public archive. Deidentified data will be made available as allowable according to institutional IRB standards by emailing the corresponding author. There is not analytic code associated with the study. Materials used to conduct the study will be made available by emailing the corresponding author.