Caregivers' and Health Care Providers' Cultural Perceptions of and Experiences With Latino Patients With Dementia

Abstract

Background and Objectives

The prevalence of Alzheimer dementia in the US Latino population in 2060 is projected to increase 7-fold, the highest among any other major ethnic/racial group. One vital question is how clinicians can tailor their care for Latinos. Given this rapidly growing prevalence, we sought to characterize the experiences and perspectives of Latino caregivers by analyzing interview data from both caregivers and experienced providers that specifically work with Latino populations. In this study, we present 6 themes that emerged along with tailored solutions and recommendations to implement in clinical practice to improve patient care and outcomes.

Methods

This qualitative analysis uses coded interview transcripts from 2 studies, one in Southern California and another in Washington State. The combined dataset included interview transcripts with 51 caregivers and 20 providers. A thematic analysis was performed on the coded interview transcripts to identify themes related to tailoring care for Latino populations.

Results

Six themes emerged from the analysis: (1) multiple caregivers involved within a family-oriented Latino household; (2) need for encouragement in advocating for loved ones in the clinician's office; (3) challenges in reaching and communicating with the Latino population; (4) increasing use of technology by patients and caregivers despite some challenges; (5) stigma associated with mental health issues within the Latino culture; and (6) limited understating of dementia leading to a delay in care in the Latino population.

Discussion

Many Latino households have a strong sense of familism, thus care coordination with multiple caregivers is essential to high-quality care. Improved shared decision-making strategies tailored to a population that may be culturally deferential to authoritative figures can aid caregiver understanding and engagement with the provider. These interactions can often be more authentic when communicating with a member of the care team in Spanish. A cultural stigma of mental illness was also identified; clinicians can work toward normalizing discussion of mental illness and its treatment by openly discussing mental health during annual visits. Through these themes, we demonstrate some of the strengths and weaknesses of the current care delivery model within a sociocultural context to improve patient care and outcomes for Latino families caring for individuals living with dementia.

Introduction

The national prevalence of dementia, an umbrella term for cognitive impairment leading to an inability to perform everyday activities, in individuals 65 years and older in the United States is estimated to be approximately 10%.¹ Alzheimer disease (AD) is the most common cause of dementia (60%–80%), with an estimated 6.5 million Americans aged 65 years and older affected in 2022.^2,3 Of those affected by AD, non-Latino Black and Latino Americans are overrepresented; it is estimated that 14% of Latino adults aged 65 years and older are affected compared with 10% of the older White population; some estimates suggest a 1.5× increased risk of developing AD in older Latino adults.² This discrepancy may be attributed to a range of socioeconomic disparities and discrimination Latino people have historically faced in the United States, which are associated with cognitive impairment, more so than any genetic difference.² Although the prevalence of AD may be higher in Latino populations, several studies have found that Latinos have a longer survival time after a diagnosis of dementia compared with other racial/ethnic groups, a promising indication.^4,5 Potential protective factors that have been proposed include differences in caregiver support, neuropathologic disease process differences, and differences in time to diagnosis.⁵ Further understanding these factors could strengthen care delivery for all patients with dementia.

Looking forward, the prevalence of Alzheimer dementia in the US Latino population is projected to increase 7-fold by 2060, the highest among any other major ethnic/racial group.^6,7 This dramatic increase is primarily driven by an aging and historically underserved population influenced by a range of unique cultural, environmental, and psychosocial factors.⁶ Latino populations are starkly heterogeneous, with some facing disproportionate systemic challenges in language proficiency, access to a high-quality education, immigration support, and socioeconomic burdens that ultimately impair access to health care and result in a less ideal form of care delivery for AD.⁶

Past studies on Latino caregiver experiences of people with dementia have noted a strong sense of familism and decreased access and awareness to health and support services.⁸ It has also been noted that the clinical evaluation of dementia among Latinos is disproportionately affected; certain neuropsychological tests of dementia may not be as accurate as in non-Latino populations, and linguistic factors important for assessing functional abilities may also impair diagnosis.⁹ Part of the equation that remains unsolved in the literature is how clinicians can tailor their care for Latinos given the potential nuanced circumstances Latino populations may face. There is a growing interest and urgency to proactively understand how to better support Latino caregivers and patients with dementia with practical real-world solutions from a clinician's perspective.¹⁰

Given the rapidly growing prevalence of dementia within the US Latino population, we sought to characterize the current experiences and perspectives of Latino caregivers by analyzing interview data from both caregivers and experienced providers that specifically work with Latino populations. From this study, we aim to enlighten practicing clinicians to the unique challenges Latino caregivers face and create a clear framework of tailored solutions and recommendations to implement in one's practice to ultimately improve patient care and outcomes.

Methods

We analyzed semistructured interview data that were collected for 2 qualitative studies of Latino caregivers and providers of health care and social services in Southern California and Washington State.^11,12 In total, the dataset included 51 Latino caregivers and 20 providers. The objective of the Southern California study was to examine the health information–seeking behavior of Latino caregivers. The objective of the Washington State study was to identify what adaptations to an evidence-based intervention were needed to improve cultural relevance for Latino caregivers. Participant selection, data collection, and data analysis are summarized below and also described elsewhere.^11,12

Participant Selection

In the Southern California study, participants were recruited from Los Angeles County between March 2018 and February 2019. Caregivers eligible for participation needed to be family members or friends of individuals with dementia, serve as primary caregivers, self-identify as Latino, and be proficient in English or Spanish. In total, 21 eligible caregivers participated in the study. A convenience sample of 6 health care and social service providers with expertise in dementia services also participated in the study. Caregivers were recruited from the Rancho Los Amigos/USC California Alzheimer's Disease Center and a multiethnic caregiver support group in the community. In addition, the study was advertised on Alzheimer's Greater Los Angeles' Facebook page and the Alzheimer's Association TrialMatch website. Caregivers who participated in the study were also encouraged to share the study information with other caregivers in their network who may be interested in study participation.

In the Washington State study, participants were recruited from February 2020 to March 2021. Caregivers were required to identify as Latino, be at least 21 years of age, provide care to a person diagnosed with dementia, live with the person with dementia (or within 5 miles), and provide a minimum of 8 hours of care per week. In total, 30 eligible caregivers participated in the study. Caregivers were identified through electronic health records at Kaiser Permanente Washington and UW Medicine and distribution of recruitment flyers at UW Medicine and in community settings. In addition, the study was advertised through media appearances on local Spanish radio stations and articles in local Spanish newspapers. A convenience sample of 14 health care and social service providers with expertise working with Latino populations also participated in the study.

In both studies, interested individuals were screened for eligibility. Informed consent was obtained from those who met the eligibility criteria. Caregivers in the Southern CA study received up to $100 gift cards for their participation. In the WA study, caregivers received $100 for their participation. Only the providers in the CA study received $100 gift cards for the interview.

Data Collection

In the Southern CA study, caregivers and providers were interviewed through telephone in either Spanish or English, with interviews lasting 20–60 minutes. These interviews were conducted using a semistructured interview guide, which explored the information-seeking behavior of Latino caregivers. Topics included accessing personal health information, managing behavioral and psychological symptoms, handling medications, coordinating with health care and social service providers, and learning about dementia care. The interviews also examined information sources, access, utilization, and barriers. Interviews were audio-recorded and transcribed verbatim by a professional transcription company.

In the WA state study, caregivers and providers were interviewed in-person or virtually by a bilingual-bicultural staff member. These interviews were conducted in English or Spanish, spanning a duration of 30–60 minutes. The study used a semistructured interview guide (different from the Southern CA study), which explored topics such as the role of family members in caregiving and providers' challenges in delivering high-quality care to Latinos with dementia. The questions in the interview guide were based on Barrera and Castro's heuristic framework for the cultural adaptation of evidence-based interventions and the Cultural Treatment Adaptation Framework.^13,14 Interviews were audio-recorded and transcribed verbatim by a professional transcription company.

Data Analysis

In the Southern CA study, thematic analysis was used to code and analyze the interview transcripts.¹⁵ The transcripts were analyzed in either Spanish or English. The research team used a theory-driven approach, relying on codes representing health information-seeking behavior components and common caregiver information needs. The coding process involved independent coding by 3 researchers, reconciliation of coding disagreements, and codebook finalization. Dedoose was used to manage the coding process.

In the WA state study, thematic analysis was also used to code and analyze the interview data.¹⁵ The transcripts were analyzed in either Spanish or English. Initially, the first author reviewed and took notes on the transcripts in Spanish or English. They developed a codebook based on the Cultural Treatment Adaptation Framework components. The first and second authors independently coded transcripts, resolving discrepancies, clarifying code names, and adding new codes as necessary. Dedoose was used to manage the coding process.

For this study, the authors analyzed coded experts from both the Southern California and Washington State studies that pertained to the objective of this study. We analyzed codes pertaining to engagement with and delivery of materials to caregivers, along with caregiver activities regarding managing challenging behaviors and emotions, advocating and coordinating medical care, serving as a surrogate, getting support, and facing concrete challenges. The excerpts were holistically reviewed for common themes and categories through repetition of words, phrases, and concepts by multiple participants. These themes were independently described by each of the authors, who then reviewed their themes as a group and came to a final consensus.

Standard Protocol Approvals, Registrations, and Patient Consents

Both studies received ethical approval from their respective institutional review boards, including the Institutional Review Board (IRB) at the University of Southern California and Rancho Los Amigos National Rehabilitation Hospital and the IRBs at Kaiser Permanente Washington and the University of Washington. In the Southern California study, the research fell under the exempt Category 2 for interview research due to minimal risk, and therefore, informed consent was not required; however, all participants were provided with printed information about the study. In the Washington State study, participants provided either written or verbal informed consent.

Data Availability

Anonymized data not published within this article will be made available by request from any qualified investigator.

Results

Demographics and other characteristics of the 51 Latino caregivers from Southern California and Washington state are detailed in Table 1.

Table 1.

Caregiver Characteristics

Characteristics	Latino family caregivers from Southern California (N = 21)	Latino family caregivers from Washington State (N = 30)
Mean age (SD)	54.2 (9.5)	54.5 (13)
Women (%)	17 (81.0)	20 (67)
Employed (%)	8 (38.1)	16 (53)
Education (%)
Less than high school	6 (28.6)	1 (3)
High school degree or equivalent	5 (23.8)	9 (30)
Some college	5 (20.8)	4 (13)
College graduate	3 (14.3)	7 (23)
Vocational or technical training	2 (9.5)	4 (13)
Postgraduate		5 (17)
Preferred language (%)
Spanish	12 (57.1)	18 (60)
English	9 (42.9)	12 (40)
Mean household size (SD)	4.1 (2.1)	3.1 (1.6)
Children younger than 18 years in household (%)	16 (76.2)	9 (30)
Weekly hours of caregiving (%)
Less than 14 h	2 (9.5)	3 (10)
15–20	4 (13)	4 (13)
21–34 h	2 (9.5)	2 (7)
35 h or more	17 (81.0)	21 (70)
Relationship with the person with dementia (%)
Adult child	14 (66.7)	19 (63)
Spouse/partner	5 (23.8)	8 (27)
Close family member	2 (9.5)	3 (10)

Six themes emerged from the analysis:

1. Multiple caregivers involved within a family-oriented Latino household

2. Need for encouragement in advocating for loved ones in the clinician's office

3. Challenges in reaching and communicating with the Latino population

4. Increasing use of technology by patients and caregivers despite some challenges

5. Stigma associated with mental health issues within the Latino culture

6. Limited understating of dementia leading to a delay in care in the Latino population

Theme 1: Multiple Caregivers Involved Within a Family-Oriented Latino Household

Many interviews detailed the family-oriented structure found in many Latino households, leading to multiple caregivers for a single patient with dementia. Subthemes identified demonstrated the clear advantages of joint problem solving among multiple family members (Table 2).

Table 2.

Excerpts From Theme 1: Multiple Caregivers Involved Within a Family-Oriented Latino Household

Sub-theme	Representative quote
1A) Cultural expectations of a family to care for the older individuals	Caregiver_WA_13: …[I]t's not a role that [caregivers] feel like [is] a job. It's part of who we are as a family that we take care of each other. And so 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
1B) Advantages of problem-solving as a cohesive family unit	Provider_WA_7: Often, [families are] multigenerational. And they know the person so well, and can really just do a lot of problem-solving and just trying to figure out how can we work within the confines of the disease to make things easier for everybody
1B) Advantages of problem-solving as a cohesive family unit	Provider_WA_7: What's impressive is that, I think, [families] already gone through many of the initial recommendations we would have given on managing behavioral issues. And part of what has enabled them to do that, it's often a pretty close-knit family that comes in
1C) Care coordination within a family	Provider_CA_15: But a lot of the time, even if there were a lot of family members, the family wouldn't be cohesive. I remember one son or grandson just saying that, like, we are not a cohesive family. So, yeah. Coordinating that was always very hard, most of the time, I think, very hard for most of the families
1C) Care coordination within a family	Caregiver_WA_32035: [Other family members] don't really know how to take care of her or something. But they just don't really have the patience to do or something, so. The main issue for me is that they become kind of even less helpful as it has progressed
1C) Care coordination within a family	Caregiver_CA_11: My sister keeps track of most of his appointments nowadays. Whenever he does need to visit a doctor, or whatever, usually my sister will make the appointment right now… Well, she'll make that appointment and sometimes it will be my brother that takes him, depending who's available
1D) Communicating treatment plans to involved caregivers	Caregiver_WA_13: …[O]ur families do not understand the important role that we take as individuals to be responsible, to understand why our [family] member [is] taking all the medication they're taking
1D) Communicating treatment plans to involved caregivers	Caregiver_WA_RG13: Yes. We take turns; As brothers that we are and the United Family, which we have tried to do our best, we took turns. I am with my mother all day, and the one that comes to help us at night takes care of 2 nights, and then another brother of 2 different nights comes, and so on
1E) Use of family conferences to facilitate care coordination	Provider_CA_PRO3: We do this family conference when we make, you know, after they've had whatever necessary testing we need, and we spend an hour going over things with them. And then at the end of that, they get a written sheet with, this is what the diagnosis is, this is what we're recommending. Which they get to take home
1F) Case of a single caregiver within a large household	Caregiver_WA_8: Well, it is not difficult, but it sometimes becomes a little complicated, you know because as I have a husband, I have children, my daughter lives here with her five-year-old girl, I take care of her, she works, then I am the one I do practically all day. I make breakfast, lunch, dinner, that if the snacks, that if I wash the clothes, I do so many things, I go to the store

Several quotes highlight the cultural value of familism, which emphasizes that families are responsible for the care of their own members:

It's part of who we are as a family that we take care of each other. And so 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.

Theme 2: Need for Encouragement in Advocating for Loved Ones in the Clinician's Office

Several interviews provided examples of the deferential interactions of a caregiver and their provider and a need for encouraging better patient advocacy in the clinician's office (Table 3):

And people who have lower literacy levels tend to be lower education and particularly in minority cultures, there’s a lot more hesitation and questioning medical authorities so people will just say, “Yes, yes, yes,” because they want to be seen as compliant or good patient and don’t want to—they’re afraid that if they ask too many questions the provider will get upset or they will appear stupid, or whatever. And so they don’t ask questions and they just accept what’s said to them.

Table 3.

Excerpts From Theme 2: Need for Encouragement in Advocating for Loved Ones in the Clinician's Office

Sub-theme	Representative quote
2A) Generational differences of advocacy	Provider_WA_6: It is working with a young generation because the old generation, they are just not open to ask questions. But yeah. It's easy with a younger generation for me to work with
2A) Generational differences of advocacy	Provider_WA_6: In the past, everybody [cares] for their loved ones, even sometimes it's really challenging. But in the new generation that I'm working with, they are more open to just find different [options] of provide care even [if] not at home. So they are more open to accept resources than the old generation
2A) Generational differences of advocacy	Provider_WA_13: And we understand that culturally, we don't question authority, that they have the right to be able to ask questions, especially if things are not clear to our patients. And that's a message that I tend to give our families, that if you don't understand something, please ask the nurse, ask the provider
2A) Generational differences of advocacy	Provider_CA_PRO13: And people who have lower literacy levels tend to be lower education and particularly in minority cultures, there's a lot more hesitation and questioning medical authorities so people will just say, “Yes, yes, yes,” because they want to be seen as compliant or [a] good patient and don't want to—they're afraid that if they ask too many questions the provider will get upset or they will appear stupid, or whatever. And so they don't ask questions and they just accept what's said to them
2B) Understanding of next steps outside the clinician office	Provider_WA_13: And so the doctor may be prescribing something, they may be telling them why they're prescribing it, and family members will not question that. And so I have seen through my experience that I'll be like, “Oh, they've prescribed this. Well, what is this medication for?"
2C) Time spent on patient education	Provider_WA_13: And so one is not [understanding] the importance medication, not picking them up, and not understanding that there's resources to available to address those challenges
2C) Time spent on patient education	Provider_WA_13: …[P]roviders have a limited amount of time with patients. And again, it's educating our patients that they should be ready when they meet with the provider, have their list of questions, let the provider know that they don't have access to health insurance, letting them know that they didn't pick up the medication
2C) Time spent on patient education	Caregiver_CA_CG10: Q: And information about medicines, who gives that information? The doctors, the nurses, that of the pharmacy? Who gives that information? A: Oh, doctors Q: And, are you attentive of side effects that medicine has? That is, do you have to be in care about things like that or not? A: Yes, yes, because the specialist explains to me, he tells me, - even, the last time I was in the appointment, he told me that the pill he has to relax when he alters the …”
2D) Case of clinician nonreceptiveness to patient concerns	Caregiver_CA_CG3: “We're going to go have surgery on your knee.” And I'm like, “But wait, she could walk. She was walking yesterday?” He's like, “No, no,” and he's like took over—
2E) Example of advocacy in the clinician office	Caregiver_CA_CG6: A: Yes. And the other thing is we attend a support group. We go as a family, and sometimes we share information about the medications. Because sometimes it happens that some other patients going through a [similar] time… So we share information and then we talk to the doctor about this person that had this situation with their family member and see if the doctor wants to give the same medication as another person. We discuss the situation. Yes Q: Oh, I see. You're making suggestions to the doctor, also? A: Yes, pretty much Q: From the support group. Oh okay, okay A: Yes

Subthemes identified include generational differences in the face of authority and examples of situations without adequate advocacy or understanding. Another issue raised was limited patient understanding due to the limited amount of time allotted to providers for patient education.

Theme 3: Challenges in Reaching and Communicating With the Latino Population

Some participants expressed the importance of communication with Latino populations and the often subtle nuances of it that pose unique challenges (Table 4). For example, certain words or views on caregiving can mean different things within their cultural context. Furthermore, communicating in the native language was noted to facilitate establishing rapport and providing a deeper sense of connection to the clinician:

Table 4.

Excerpts From Theme 3: Challenges in Reaching and Communicating With the Latino Population

Subtheme	Representative quote
3A) Importance of communicating in Spanish to build rapport	Provider_WA_4: …[I]t's easy with Latinos, especially if you speak their language and you have that sort of relation that you come from similar backgrounds and you're making the effort to see them in their native language and so they're very appreciative of that
3A) Importance of communicating in Spanish to build rapport	Provider_WA_1: Talking to someone who's going through what they're going through or who has in the past is really valuable, and especially if that can be someone who speaks Spanish and there's a real sense of connection
3B) Importance of communicating in Spanish for patient understanding	Caregiver_CA_14: And when you go and collect medicine, have you not had any problem communicating with the pharmacist or does not understand what you are saying or that you are complicated in some way? A: Not because people who see that one does not speak Spanish, so they put a person who speaks Spanish so you can understand things well Q: And hasn't you had problems such as not being able to understand what the bottles say, not being able to understand what the brochure says? Things like that? A: Not because everything comes in Spanish Q: Everything comes in Spanish
3B) Importance of communicating in Spanish for patient understanding	Caregiver_CA_12: Q: And when you collect the medications, do you [get] your medicine there, and [get] a sheet with the information about the medication? Q: No, nothing [besides] the bottle Q: …do they give [the instructions] to Spanish or English? A: No, in English Q: Well, then they are not useful A: No, they are useless Q: Ok, and the pharmacists give you a consultation to explain or offer you to explain the medications? A: No. As the doctor explained to me. Or nothing else [other than] “a capsule a day or 2.” Nothing else
3B) Importance of communicating in Spanish for patient understanding	Caregiver_CA_8: Q: Very good. Have you sometimes experienced some problems in obtaining information for things that, sometimes in case you do not read English or by language or some other method…? A: Sometimes yes. I don't understand what they tell me, and as I always go alone
3B) Importance of communicating in Spanish for patient understanding	Caregiver_CA_12: Q: And would they have [Caregiver Support Group] what to be in Spanish? A: Yes, in Spanish. They have told me some places, but of pure English, not Spanish. And there would be where they teach or something, I would leave
3C) Understanding cultural nuance to deepen rapport	Provider_WA_3: In that sense, humor is also very important because, culturally, I feel like that's a big piece for the Latino population, just facing things with humor and being able to laugh about themselves and their circumstances sometimes. Yeah. And it is harder to do that with someone that doesn't know your culture
3C) Understanding cultural nuance to deepen rapport	Provider_WA_7: I've been told generalities about [being] cautious, don't use the word burden. This is part of perhaps the culture review. It's not a burden to provide caregiving to a family member
3C) Understanding cultural nuance to deepen rapport	Caregiver_WA_04: And I sit there and wonder to myself. I have friends who say, “Well, people do put them in homes.” And they do this and they do that. And I go, “You don't understand. My culture, we don't do that. We keep our responsibilities until you just can't. And if, for some reason, you have to do that it has to be because they're ready to croak
3D) Promotion of resources at Latino-centric facilities	Provider_WA_1: I would say [resources include] community centers, senior centers, Latino-focused organizations. I mean, really, any health care organization that's serving the Latino community would be a resource for caregivers

…[I]t's easy with Latinos, especially if you speak their language and you have that sort of relation that you come from similar backgrounds and you're making the effort to see them in their native language and so they're very appreciative of that.

Theme 4: Increasing Use of Technology by Patients and Caregivers Despite Some Challenges

A common theme that emerged was the use of technology for greater flexibility and accessibility to resources for both caregivers and patients with dementia. Subthemes identified certain applications of technology within this context and potential barriers to the use of technology (Table 5).

Table 5.

Excerpts From Theme 4: Increasing Use of Technology by Patients and Caregivers Despite Some Challenges

Sub-theme	Representative quote
4A) Virtual programming for caregivers	Caregiver_WA_RG8: Then the program, for example, we would offer you as in a completely virtual or combined person, of the 3, which one would you prefer? I think the virtual
4A) Virtual programming for caregivers	Provider_WA_5: Oh my. I would love to provide maybe a remote support group. I think it's really difficult when you don't have anybody to care for your kids and/or keep an eye on your loved one with dementia
4A) Virtual programming for caregivers	Caregiver_CA_06: Q: Okay. So when you look up something on YouTube, what do you put in to look for a video? A: There is a page and it's for Alzheimer's. I think it's a closed group. And the doctors, they have like the tech talks
4B) Older adults are getting more familiar with technology	Provider_WA_2: Five years ago, I would've said, “Oh, that'll never work.” But I find that we're getting more connected. Even older adults are getting more connected. I think it would be-- if they can ask questions, and the information is clear and concise so that there's no room for your own interpretation
4C) Common barriers to technology use—comfort level and access	Provider_WA_9: So many family caregivers haven't joined if they don't have that comfort level or technology access. So that's one barrier
4C) Common barriers to technology use—comfort level and access	Provider_WA_6: They have access, probably, if there is a family member willing to help, then probably it's going to be easy. If we find, for example, a son, a granddaughter who are willing to just set a computer and be there guiding, it could be possible
4C) Common barriers to technology use—comfort level and access	Provider_WA_3: Some of them don't have the ability to read or write, so that would be a challenge to access, and how to access a video if you don't know how to read the instructions. So what I heard, actually, last week was that someone is calling and walking them step by step through what they need to do to access video. So that could be a good option if someone needs more support in accessing this. But usually, people are pretty savvy with their phones, and if it's a video that is in a well-known platform or really organic and able to figure out, I think they won't have any issues
4C) Common barriers to technology use—comfort level and access	Caregiver_CA_13: I thank God that I have access to the Internet, because if something is stuck, it is the first resource I use. I know that I can speak to other people, ask for [their] opinion who are going through the same [situation]. But the Internet helps me a lot. Because it is where I grab information, and I know that many people…who are Hispanic, who do not know English. Sometimes they ask me “Can you help me look for this?” So yes, I would like, right? Because right now I believe that technology is also being one of the resources for any disease, right? But for Alzheimer's I think there are also many resources. It's just knowing how to find them, knowing how to use them

Theme 5: Stigma Associated With Mental Health Issues Within the Latino Culture

Several providers who were interviewed noted denial of a pathology and withholding recommended treatment due to stigma surrounding mental health in Latino culture (Table 6):

I think it’s denial. And they do believe that it’s kind of like a stigma you know that Latinos have about mental illness. They don’t want to recognize that their parent has mental illness.

Table 6.

Excerpts From Theme 5: Stigma Associated With Mental Health Issues Within the Latino Culture

Sub-theme	Representative quote
5A) Denial that a family member has a mental illness	Provider_WA_8: I think it's denial. And they do believe that it's kind of like a stigma you know that Latinos have about mental illness. They don't want to recognize that their parent has mental illness
5A) Denial that a family member has a mental illness	Caregiver_CA_11: Sometimes it is [difficult] when I notice something in him…because…I don't want to realize. Or [attribute it to] forgetting everything in every [once in a] while
5A) Denial that a family member has a mental illness	Caregiver_CA_02: A: Well, I have older brothers and when we all kind of noticed she was just talking a little bit off on left field I noticed my brothers stepped back kind of not wanting to get involved or maybe in denial. However, I didn't feel the same way and I'm like, “Mom needs help.” She needs more tending to now, not for us to abandon her
5B) Concerns of experimental treatment by the older generation	Provider_WA_6: Is there another reason why you think Latinos don't participate in research besides the language and the translation? They think they are going to be like, they are going to experimental treatment with them, and the lack of information on the older's generation, they are not open to participate. Probably in the future with the new generation, could be
5C) Hesitation in taking mental health medications	Provider_WA_4: Yeah, it could be an anti-psychotic or even things like anti-depressants. There's a big hesitation in taking those type of medications or in general medications overall in the community
5D) Hesitation in discontinuation of mental health medications	Provider_CA_2: Like, the psychiatrist might prescribe an anti-depressant to deal with depression or something like that, or they might tell the family to have the patient stop taking a medication that they have been taking. But the family will just kind of do their own thing

This stigma seems to be rooted in having limited information and sound understanding of what constitutes illness and how treatment can be beneficial for a seemingly invisible disease.

Theme 6: Limited Understating of Dementia Leading to a Delay in Care in the Latino Population

Study participants noted that within the Latino community, there is a common misconception that cognitive symptoms related to dementia is a natural process of aging rather than a pathologic process (Table 7). This often leads to a delay in care.

Table 7.

Excerpts From Theme 6: Limited Understating of Dementia Leading to a Delay in Care in the Latino Population

Sub-theme	Representative quote
6A) Waiting until a person is unrecognizable before seeking care	Provider_WA_8: But us Latinos, they would wait until it's-- basically, they don't recognize you or something like the way advance of the disease. They don't look for help before. It has to be very in advance I'll say. At the beginning, the stages, no, it's not going to happen
6B) Relating dementia symptoms to stress or memory loss	Caregiver_CA_6: We didn't even understand what was the main separation with his memory like in regards to the deceased. Because we didn't know that he was going through this illness, Alzheimer's. We thought it was just the stress or some problems with the memory. We were hoping that he would get better any sooner, but he started getting worse
6C) Attributing dementia to normal aging rather than a disease	Caregiver_CA_13: …[We] need to “normalize” the disease in the Latino community because currently, there is resistance in accepting the disease. Most Latinos think say that “it's normal” or that he acts like that “because he's old”
6D) Attributing dementia to God's will	Caregiver_WA_32067: Well, from a humanistic point, I kind of think it's a God-ly thing, for some reason. I don't know. I wouldn't say her ancestors or somebody were like this. I don't think it's hereditary
6D) Attributing dementia to God's will	Provider_WA_8: Yeah, many of them believe that they have their faith and that's enough and the counsel is for crazy people or to say like people with mental illness. So they refuse to believe they need that, that God is the answer to their problems and they're fine

Discussion

Caregivers of people living with dementia play a vital role in the long-term prognosis of the disease course; it is common for 1 or more family members to assume this responsibility.² This importance especially rings true within Latino populations, a group that faces many barriers to health care and requires particularly close coordination with a caregiver for services outside the clinician's office.⁶

In this qualitative analysis focused on Latino caregivers of patients with dementia, we identified 6 common themes that add new insights into their unique experiences with the care delivery system. These include the multiple caregivers involved within a family-oriented Latino household, a need for encouragement in advocating for loved ones in the clinician's office, challenges in reaching and communicating with the Latino population, the increasing use of technology by patients and caregivers despite some challenges, the stigma associated with mental health issues within the Latino culture, and a limited understating of dementia leading to a delay in care in the Latino population. Through these themes, we demonstrate some of the strengths and weaknesses of the current care delivery model within a sociocultural context in an effort to ultimately improve patient care and outcomes. From these themes, we aim to raise awareness of the unique challenges Latino populations face and derive implementable solutions for clinicians. Furthermore, we hope to emphasize that the lessons learned in this study can extend beyond treating Latino patients and may be applicable in many different cultural contexts where there is a crossover of shared values.

Theme 1 describes the heavy emphasis of the role of the family unit found within some Latino households included in our study. The impact of familism, a cultural value that prioritizes the needs of the family unit and often entails close-knit, interdependent relationships well into adulthood, within the context of dementia has been extensively documented in the literature.^2,16-18 Naturally, the involvement of multiple family members can lead to a delegation of roles and responsibilities of caregiving and more efficient problem solving, as detailed in many of our interviews. However, with a greater number of caregivers involved, it is essential to facilitate conversation with all of them.

One way to incorporate this finding into clinical practice is to provide care coordination using virtual family conferences; this may reduce the likelihood of confusion and ensure that all caregivers are on the same page about diagnosis, prognosis, and plan of care. This can also relieve some of the burden naturally placed on a primary caregiver in remembering and relaying all information at clinic visits to the rest of the family. The involvement of case managers, patient navigators, and social workers (CM/PN/SW) in the primary care team can also help facilitate some of this communication and provide connections to resources.^19-21

Establishing a connection with family members early on in care can also increase engagement. However, it can often be difficult for the clinician to track key family member contacts and is especially relevant within the context of some Latino families that have many involved caregivers. Therefore, we propose that the electronic health record (EHR) be used to store information of all key family members so providers know who to include in important conversations in-person and virtually. Furthermore, the use of the EHR can also be used to monitor caregiver outcomes, which allows providers to identify when caregivers need support.

It is important to emphasize that these solutions may not be applicable to everyone. Certain households may not have as extensive of family support as others, as we discovered during the qualitative interviews. In these cases, it is important for the provider to proactively identify alternative strategies, such as increased involvement of CM/PN/SW, to best support the caregiver.

In our study, we found a tendency for Latinos to defer to authoritative figures and hesitate to ask questions. Part of these findings may also be influenced by the practice of the outdated model of paternalistic medicine, an approach to the patient-provider relationship that did not shift until recently to shared decision-making.²²

These factors emphasize the importance of clinicians to reinforce a climate of shared decision-making in the patient-caregiver-provider relationship at the first visit and providing adequate time for questions throughout each visit.²³ Building rapport with caregivers early on can help them feel more comfortable in asking questions and advocating for the patient. Incorporating more frequent pauses during a patient visit may also allow more time or patients and their caregivers to process the information being shared and think of questions in the moment. Finally, the incorporation of the teach-back method, which asks patients to teach-back the information being shared to the provider, can encourage greater engagement of caregivers and reduce communication barriers. These approaches may also be incorporated into continued quality improvement and training at an organizational level to promote an improved standard of care across all providers.

Theme 3 closely builds on Theme 2 in the context of the patient-caregiver-provider relationship; optimizing communication with Latino populations can lead to better rapport, understanding, and patient outcomes. Communicating in their native Spanish language is often preferred and can lead to a real sense of connection, as noted in one of the interviews. However, this preference is not universal for Latino populations, which is shown even in our own caregiver population where roughly 40% of participants across both sites preferred to conduct their interview in English; this underscores the point that providers must elucidate individual preferences regardless of cultural tendencies.

While the use of Spanish interpreters can help bridge this gap for patients who prefer Spanish, studies have shown that some patients greatly prefer bilingual providers.^24,25 In many cases, though, this is not possible, and we propose that providers consider including access to a fluent Spanish-speaking CM/PN/SW or a cultural navigator in their practice and offer the option of having them as part of the patient visit to act as a conduit of information and source of comfort and understanding.²⁶ This may also be addressed at an organizational level with prioritizing recruitment of Spanish-speaking staff and incentivizing training in a second language. The incorporation of a native speaker as part of the care team can also help inform the provider of cultural nuances that may influence the delivery of information. The use of a wide gamut of resources in Spanish can also enhance health literacy within Latino populations; health care organizations may need to further invest in the creation of these high-quality materials and fill this potential gap in care.⁹

The COVID-19 pandemic saw an exponential increase in the use of technology in all aspects of life; much of the US population was exposed to the use of virtual meeting platforms and the flexibility that it inherently carries with it.²⁷ Theme 4 explores the use of technology for different types of programming that caregivers might prefer, such as remote support groups or educational sessions. The primary provider can coordinate with the CM/PN/SW to ensure these options are accessible to all caregivers to increase the likelihood caregivers will attend and benefit from these types of programming. Furthermore, barriers to the use of technology noted in our interviews may also be resolved with the involvement of other caregivers in the family who are skilled in using technology and who can help set up the technology necessary for these meetings.

Stigma surrounding mental illness often acts as a barrier to mental health care among minorities, including Latinos.^28-31 The impact of this cultural belief manifests as denial of illness and hesitation toward treatment, as detailed in Theme 5, which can ultimately lead to suboptimal care. Providers should normalize the discussion of mental health and illness within their practice, incorporating the topics in annual visits and suggesting available educational resources. Recognizing that stigma surrounding mental health is prevalent within Latino populations and providing reassurance and detailed education of different psychiatric medications upfront may encourage improved medication adherence as well.

Similarly, a limited understanding of presenting symptoms of dementia (Theme 6) among the Latino community is another barrier to care; symptoms of dementia may be attributed to natural aging, stress, religion, and more rather than the true disease pathology. While it can be difficult to address this issue because it primarily occurs outside the office, clinicians can consider providing education on dementia to the general Latino population through community health organizations to assist communities in recognizing signs and symptoms of dementia early on and addressing it at annual visits.⁶ Continued advocacy and campaigns for dementia awareness in our communities, specifically in vulnerable populations with lower health literacy, are an important component of addressing this barrier.

Study limitations include the possible introduction of bias with the use of a combination of direct caregiver interviews and clinical provider perspectives on caregiver experiences and the utilization of interviews from 2 distinct studies. Furthermore, certain subthemes were noted by providers exclusively, suggesting that a community-centered approach involving caregivers on these topics is needed to fully verify if they are truly representative.

Despite these limitations, our findings detail a firsthand experience of Latino caregivers and the unique challenges they face with a direct proposal of implementable solutions for providers to consider. The Latino community, as with all communities, is very diverse; while general themes can help focus different characteristics and needs found in many members of the community, it may not be generalizable to all Latino patients and caregivers.

This study is meant to highlight key cultural concepts, experiences, and challenges that can be seen in Latino caregivers of people with dementia. Our findings identified 6 common themes among interviews with caregivers regarding their role within their unique sociocultural context. While impossible to be comprehensive, this article is meant to provide primary data and propose ideas for clinicians to consider while caring for Latino populations. The lessons learned and proposals in our study can also extend to other cultural contexts with common shared values, which ultimately strengthens care delivery for all patients with dementia. Many of the solutions proposed here can be implemented at an individual provider level, but systemic change through improved training with a specific emphasis on the importance of cultural awareness will ultimately raise the standard of care for all patients with dementia. A key point for clinicians is to acknowledge the diversity within each cultural group and avoid assuming that all members share the same cultural traits. Therefore, they should use a cultural framework as a guide, not as a rigid template, to deliver customized and individualized care.

In our study, many Latino households had a strong sense of familism, thus it is essential for a clinician to recognize this and focus on care coordination with potentially more caregivers than usual. A strong emphasis on shared decision-making and encouraging questions during visits with a population that may be culturally deferential to authoritative figures can improve caregiver understanding and engagement with the provider. These interactions can often be more authentic when communicating with a member of the care team in Spanish; thus, the incorporation of native Spanish speakers when the provider is not fluent as part of each clinic visit may build a greater sense of connection and understanding.

Outside of clinic visits, the increasingly prevalent use of technology can be used to facilitate greater engagement of busy caregivers with support and educational programming. Several interviews acknowledged a cultural stigma of mental illness; clinicians can work toward normalizing discussion of mental illness and its treatment by including it in annual visits. Clinicians can also promote recognition of mental illness and signs of dementia through community health programs and other venues of advocacy.

The Latino population faces the highest increase in the prevalence of Alzheimer dementia in any major ethnic/racial group; thus it is of utmost importance for clinicians to best understand how to support this group. Caregivers of patients with dementia play one of the most important roles in the outcomes of patients with dementia; thus, understanding how to best support them is in the best interest of the patient. In this study, we present first-person insights into the world that Latino caregivers face and the role providers can play to best support them.

TAKE-HOME POINTS

• → This study is meant to highlight key cultural concepts and experiences of Latino caregivers of people with dementia.

• → The prevalence of Alzheimer dementia in the US Latino population is projected to increase 7-fold by 2060, the highest among any other major ethnic/racial group.

• → We characterized the current experiences and perspectives of Latino caregivers from the perspective of both caregivers and experienced providers to enlighten practicing clinicians of the unique challenges Latino caregivers face and create a clear framework of tailored solutions and recommendations for one to implement.

• → The lessons learned and proposals in our study can also extend to other cultural contexts with common shared values, which ultimately strengthens care delivery for all patients with dementia.

• → Clinicians must acknowledge the diversity within each cultural group and should use a cultural framework as a guide, not as a rigid template, to deliver customized and individualized care.

Appendix. Authors

Name	Location	Contribution
Peter Ch'en, BS	Albert Einstein College of Medicine, Bronx, NY	Drafting/revision of the article for content, including medical writing for content; study concept or design; and analysis or interpretation of data
Payal B. Patel, MD	Department of Neurology, University of Washington, Seattle	Drafting/revision of the article for content, including medical writing for content; study concept or design; and analysis or interpretation of data
Magaly Ramirez, PhD	Department of Health Systems and Population Health, University of Washington, Seattle	Drafting/revision of the article for content, including medical writing for content; major role in the acquisition of data; study concept or design; and analysis or interpretation of data

Study Funding

The qualitative study in Southern California work was funded by the University of Southern California Suzanne Dworak-Peck School of Social Work Research Council (PI: Shinyi Wu, PhD). M. Ramirez was supported by grant number T32HS00046 from the Agency for Health Care Research and Quality. The qualitative study in Washington State was funded by the Agency for Health Care Research and Quality (K12HS026369) and Alzheimer's Association (AARG- 20-685260, PI: Dr. Ramirez). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Health Care Research and Quality.

Disclosure

The authors report no relevant disclosures. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.