Pathways of Care: a qualitative study of barriers and facilitators to engaging dementia care among underserved and minority populations in the US and Germany

Abstract

Objective:

To identify barriers and facilitators to the use of formal dementia services among underserved and minority groups (UMG) in the United States and Germany.

Method:

Semi-structured qualitative interviews with caregivers (N=18) of persons with dementia in the United States and Germany. Data were analyzed using thematic analysis.

Results:

Caregivers described their experiences in three stages of seeking, initiating, and utilizing care, and different factors served to hinder or enable the use of care services in each stage. The most important factors included limited knowledge about dementia, challenges interacting with healthcare systems, and how closely formal services met the expectations and needs of caregivers, particularly with regard to accommodating cultural or ethnic/racial identity. Caregivers shared a preference for interacting with service care providers who shared a similar identity to receive information or services.

Conclusion:

Barriers and facilitators to using dementia care services vary by stage of engaging services and may be shared across different healthcare contexts. Targeting specific barriers and strengthening facilitators could help reduce disparities in dementia care among UMG.

Introduction

Research has increasingly focused on higher disease prevalence and disparities in care among underserved and minority populations in high-income countries in the US and Europe (Babulal et al., 2019; Canevelli et al., 2019). Compared to whites in the US, the incidence of dementia from Alzheimer’s disease is about twice as high among African-Americans (Barnes, 2014) and about one and a half times as high among Hispanics (Alzheimer’s Association, 2021). This translates to an incidence 18% among of African-Americans and 14% of Hispanics age 65 and older, compared with 10% of White older adults (Alzheimer’s Association, 2021). Internationally, the incidence of dementia was estimated to be 25% higher among Blacks in the UK relative to Whites (Pham et al., 2018). Data are limited for other minority populations in Europe, but the incidence of dementia is believed to be higher than majority populations (Canevelli et al., 2019; Monsees et al., 2019). Dementia is underdiagnosed among minority groups, often because of delayed access to diagnostic services (Alzheimer Europe, 2018; Gove et al., 2021). Minorities may be undertreated (Mehta et al., 2005), and there often less availability and uptake of care and supports, compounding adverse outcomes among these groups (Cooper et al., 2010; Kelley et al., 2015). Lower rates of care and service use are likely due to myriad barriers including a lack of knowledge about dementia and available services, linguistic, religious, and cultural differences, structural barriers, and diverse views about family and caregiving roles (Alzheimer’s Europe 2018; Greenwood et al., 2015; Gibson et al., 2019).

Research has shown how healthcare disparities result from cumulative and interactive effects across different domains. The National Institute of Health’s Minority Health and Health Disparities (NIHMD) has proposed a research framework to address health disparities, which are defined as health differences that adversely affect the health outcomes among disadvantaged populations, which include “racial and ethnic minorities, socio-economically disadvantaged populations, underserved rural populations, and sexual and gender minorities” (Alvidrez et al., 2019). Among underserved minority groups (UMG), the framework specifies domains that interact to shape health outcomes by influencing individual, interpersonal, community, and societal strata ranging from biological, behavioral, environmental, social-cultural, and health system effects. Research to address disparities is a pressing need (Babulal, 2019), as dementia incidence is expected to significantly increase in the future as minority populations both age and increase in size. For instance, rates among Hispanics and African-Americans are projected to rise faster than among other groups in the US, and in the UK a seven-fold increase among minority groups is expected (Alzheimer Europe, 2018). Families of UMG provide more informal care and the financial burden is disproportionately higher. By one estimate, elderly Black families in the US spend 84% of their wealth on out-of-pocket expenses for dementia care in the last five years of live, compared with 32% of non-black families (Kelley et al., 2015). Without strategies to reduce disparities in use of care services, this gap may widen even further as more UMG develop dementia in the future.

While research on care use across UMG populations is limited, some studies suggest that barriers may have distinct impacts at different timepoints of receiving dementia care (Kosloski et al., 2001), and that identifying the challenges present for UMG at specific stages can be a means to improve care use (Innes et al., 2014). While many barriers to engaging dementia care are shared among UMG across settings and health systems (Innes et al., 2011; Kenning et al., 2017), little is known about the interface between health systems and the diverse social contexts that shape caregiving experiences and care use.

This exploratory study is a secondary analysis which builds on previous work about the experiences of dementia caregivers with services in the United States (US) and Germany (Monsees et al., 2020). We examine the experiences of UMG to identify how barriers and facilitators to engaging care emerged at the interface between social context and healthcare systems. Specifically, we evaluated experiences among UMG in the US, who are at heightened risk for dementia (Demirovic et al., 2003; Steenland et al., 2016), and Turkish immigrants in Germany, who constitute one of the country’s largest minority population and experience under-diagnosis of dementia despite likely having higher rates of disease (Monsees et al., 2019; Stock et al., 2018). The context of dementia care in each country is shown in Figure 1.

Figure 1: Study Context.

While there is heterogeneity among UMGs, our goal was to distinguish shared features and common barriers experienced at different stages of engaging care, to thereby suggest areas in which interventions could be targeted. We also provide recommendations made by UMG for improving formal care, as previous studies have rarely investigated the specific recommendations of caregivers themselves (Kenning et al., 2017). While much international data comes from research conducted in different settings with unique protocols, this study adopted a standardized protocol to enable more direct comparison of issues facing persons with dementia (PwD) and their carers across countries.

The aims of this study were to: 1) examine the caregiving experiences of family caregivers among UMG in the US and Germany; 2) elucidate which factors function as barriers or facilitators to engaging formal care services; and 3) provide recommendations about what types of interventions, and in which stage, may facilitate higher use of services among UMG across contexts. By identifying potential avenues to increase the use of services, we hope to move closer towards addressing disparities among these populations.

Method

This study was performed in cooperation at the University of Wisconsin-Madison and University of Greifswald (two university settings, one in the Midwestern US, and the other in northern Germany). We used a descriptive, qualitative approach to examine the experiences of UMG informal dementia caregivers with dementia specific support services.

Participants and recruitment

Eligible participants in the US cohort were unpaid family or friend caregivers who had been involved in the care of a person diagnosed with dementia, spoke English, and lived in a rural and/or 25% most disadvantaged neighborhood in the Midwestern United States. A rural area was defined as an area that contained fewer than 200 people per square mile. A validated index of neighborhood socioeconomic contextual disparities, the Area Deprivation Index (Kind & Buckingham, 2018), was used to identify residence in the 25% most disadvantaged neighborhoods in the region. Participants were recruited through University-based research registries (n=4), flyers distributed by regional dementia-related organizations (n=4), and government-operated aging resource centers (n=2).

Eligible participants in the German cohort were individuals of Turkish heritage who were involved in the care of a family member with dementia. People from Turkey constitute one of the largest UMG in Germany, and were chosen because their cultural background has been reported to substantially limit their access to healthcare (Bermejo et al., 2012). Individuals were recruited through government sponsored courses (n=3) or informational centers (n=2). Recruiting was challenging (several potential subjects attributed their hesitancy to concerns about written informed consent), and initial participants recruited additional individuals to join the study (n=3). Demographic information is listed in Table 1.

Table 1.

Demographics of Interview Participants (N=18)

Age (years)
>65	10 (56%)
<65	8 (44%)
Gender
Female	16 (89%)
Male	2 (11%)
Ethnicity / Ethnic background
Black or African American	3 (17%)
Hispanic or Latino	1 (6%)
White	6 (33%)
Turkish	8 (44%)
Relationship to Care Recipient
Child	14 (78%)
Spouse	2 (11%)
Grandchild	1 (6%)
Caring for multiple recipients	1 (6%)

Data collection

The study among the US cohort (USC) was approved by the University of Wisconsin-Madison Institutional Review Board (2018–0941), and written consent was waived. Interviews were conducted by 2 trained interviewers, and participants received an honorarium for participating in the study. Because of geographical constraints, interviews were conducted via phone, and took place between August 2017 and July 2019. The study among the German cohort (GC) was approved by the University Medicine Greifswald’s ethics committee (BB 144/17), and written consent was obtained. Interviews were conducted in-person by a trained interviewer in a location of the interviewee’s choice, and interviewees could elect to have someone else present (e.g. family member) to assist with translation. Participants did not receive an honorarium. Interviews took place between June 2018 and March 2019.

Interviews in both cohorts followed the same semi-structured question guide to gain insight into caregivers’ and care recipients’ backgrounds, relationship with the care recipient, caregiving journey, informal supports, and interactions with formal supportive services (Supplementary Table 1). Consistent with thematic analysis, interviewers asked about emerging themes when relevant.

Data analysis

All interviews were recorded and transcribed verbatim. Interviews in the GC were conducted in German and transcribed in full in German. All quotes used were translated into English. Data were analyzed using methods of thematic analysis (Braun & Clarke, 2006) to create a coding framework with a combination of inductive and deductive categories. All study team members reviewed a subset of transcripts to determine relevant codes and met to iteratively derive the coding framework. For each set of data, an initial coding framework was established, and was iteratively reviewed in conjunction with interview data with other team members to ensure that the framework was comprehensive. For the US data, the final coding framework was then applied to all interviews by four trained coders using NVivo software version 11. Each transcript was coded independently by at least two coders, and disagreements were rectified through consultation with a third team member. For the Germany data, the coding framework was applied to all interviews by one coder for line-by-line analysis.

Following completion of line-by-line coding, the US and German study teams reviewed codes generated across all interview data to identify broader, emergent themes. This was the basis for the secondary analysis, in which one coder established a framework that was used to review all interviews, described in Table 2. This framework was further refined as new categories emerged, until no further categories could be identified in the interviews. This was then used to code interviews from both data sets line-by-line.

Table 2:

Coding Framework

Category	Description
Process of seeking diagnosis	Statements describing when and why a diagnosis was sought and the experience of obtaining diagnosis
Process of seeking support	Statements describing knowledge about available support, descriptions of searching for information about services
Process of accessing formal supports	Statements referring to initiating contact with or enrolling in a specific supportive service or care provider
Process of engaging formal supports	Statements describing experiences with using supportive services over time
Barriers or Facilitators to Process	Statements where the caregiver presents elements that hinder or aid the process of seeking, accessing, or engaging supportive services
Informal networks and support	Statements describing how information or help is obtained from informal networks, and appraisals of that information and/or help
Appraisal of formal supportive services	Statements where the caregiver evaluates either the supportive services themselves or the staff delivering them
Caregiver Role Appraisal	Statements that indicate the caregiver’s appraisal of how their role may impact the processes
Caregiver Values, Attitudes, Beliefs	Statements where a caregiver describes how a value influences the processes
Caregiver Prior Experiences and Knowledge	Statements where a caregiver describes previous knowledge, preparation or training that may impact the processes
Caregiver or Staff Gender	The caregiver describes how their own gender or another’s gender influences the processes
Description or Evaluation of Relationships	The caregiver describes how the type or quality of a relationship impacts the processes
Description of caregiving	Statements appraising the experience of caregiving
Caregiver recommendations	Caregiver statements formulating suggestions for improving support services
Geography (distance)	The caregiver describes how the geographic distance between persons or services affects processes
Culture of language	Statements that indicate how culture, language or religion impact experiences with services
Race or Ethnicity	Statements that indicate how a person's race or ethnicity influences processes
Income	Statements that indicate how a person's income influences processes
Education	Statements that indicate a person's level or type of education or literacy impacts processes
Health status	Statements that indicate the caregiver or person with dementia has a condition that impacts the processes

Results

A total of 18 caregivers were interviewed. 10 caregivers (56%) were older than sixty-five, and 16 (89%) were female. In terms of their relationship to the PwD, 14 (78%) were children, 2 were spouses, and one was a grandchild; one child was caring for multiple recipients. In the GC all caregivers were of Turkish heritage. In the USC, 3 (17%) of caregivers self-identified as Black, 1 as Hispanic/Latino, and 6 as non-Hispanic White.

Stages of Care

Caregivers consistently described their experiences with engaging services as falling into three stages (Table 3), according to which major themes are organized. The first stage precedes diagnosis, as families recognized that the PwD was acting or thinking differently and began seeking support and information. After a diagnosis was received, caregivers began the process of accessing and setting up care, or initiating services. In the third phase of utilizing, caregivers are regularly using a range of services, and connecting to new services as needed.

Table 3:

Phases of Care

Phase	Description
Seeking Services	Commonly described as a period of struggle, during which caregivers observed cognitive and behavioral changes in the person with dementia but did not understand the causes Caregivers had very little knowledge about the disease or services available, and had to persist and actively search for formal resources, e.g. browsing newspaper advertisements or searching online Families frequently encountered diagnostic delays The influence of informal networks varied, and could either aid or hinder accessing resources
Initiating Services	Phase of entry into services, which was generally relatively brief. Services initiation was positively influenced if the caregiver and the service provider representative (often social workers) shared the same ethnic/racial background. Common ways to access services were social workers, local government or government-sponsored programs, and provider referrals. Service providers were described as actively integrating the caregiver into a service network and identifying appropriate service options.
Utilizing Services	A phase wherein caregivers are connected to formal services, use them regularly, and through the services, gain referrals to additional services. This is typically a long phase, with services inside and outside the home.

Seeking Support Services

Prior knowledge of dementia and diagnostic delays

Caregivers across both cohorts consistently reported having very little knowledge about dementia symptoms. When memory problems were noticed, initial symptoms were often seen as a normal part of aging, and help was sought only after a more significant memory lapse:

She had already gotten aggressive. And then slowly she also sort of started to forget things. We didn’t take it seriously. And the suddenly, two or three years ago, a friend died. Her son came to us, and said he was at the funeral in Turkey, and then my mother says ‘Tell your mother hello’. We were shocked. I said ‘uh, mom. His mother just died. What are you talking about?’ And she said ‘oh, I completely forgot’. That’s when it started, we knew that it had gotten serious. (child serving as caregiver, German Cohort (GC) participant #6)

There was often a significant period of time, on the order of years, between noticing a change and engaging the healthcare system for a diagnosis. This delay often caused significant distress for the family, as there was uncertainty about the condition or needs of the PwD, and caregivers could not access services without a diagnosis:

I just struggled, you know. Probably for about 3 years… I didn’t have a diagnosis. I didn’t have any diagnosis, and I knew that there was memory loss, until I asked his doctor to do that. (spouse, United States Cohort (USC) participant #2)

When diagnosis was sought, caregivers often felt further testing should have been done by healthcare providers, or reported significant delays in testing, even when the caregiver was actively seeking diagnosis.

But I did call ahead and ask them to do a memory test. And that was kind of frustrating because they gave her a really basic test and they said, “You’re fine, you did great.” And it was, I felt she [the PwD] didn’t even do that good on it but they just didn’t wanna…pursue that. (child, USC#6)

Informal networks

For many caregivers, the decision to seek services was related to their informal networks. If networks were unable to provide guidance, or could not provide help due to distance, lack of time, or absence of support, caregivers tended to seek information and help elsewhere:

I couldn’t count on my friend who’s ignorant about the disease […] No. I need professional help. (child, USC#1)

Decisions to seek care usually involved several points, and many caregivers initiated contact with formal sources of information only after these had been recommended by informal networks. In this way, informal networks could facilitate the transition to initiating services:

She alerted me [to the caregiving group] and so I thought, oh that’s a really good thing for me to sign up. Only when I was in that did I realize and people there encouraged me to get a diagnosis. (spouse, USC#2)

Initiating Support Services

Routes of Service Initiation

Caregivers from both cohorts generally found only limited information on their own, including from the internet or informational leaflets. Healthcare providers often provided referrals to social work, but did not provide specific information about services. Caregivers in both cohorts initiated services through similar routes, which included educational dementia seminars, caregiver groups, social workers, and aging or dementia centers (Figure 1).

All caregivers reported that educational opportunities, including what were often termed “dementia seminars”, were very helpful. They valued learning about the disease, how to manage symptoms, and important elements of planning for the future:

We read a lot of specialized literature […], watched documentaries about how to deal with [the disease], and how are others doing it […] and we spoke with people working in that field. (grandchild, GC#5)

We saw videos of people with different stages of dementia, uh, so that helped me place where my mom was on the ladder…just going out learning about the dementia, learning about legal issues, they had a section on like nursing homes, what to look for, what websites to go to. (child, USC#7)

Caregiver groups allowed caregivers to interact with others in a similar position, and get information tailored to their situation, helping to navigate complex questions and connect with other resources:

I think just being able to talk with them, that you can’t always talk with about others that don’t understand at all. […] In fact, I had asked a question – do you think I should change the power of attorney for myself, because my husband was on it along with my son. Well [the group leader] said yes, by all means. […] And also I signed up for the palliative care program for my husband. (spouse, USC#2)

Social workers helped enroll in programs across both cohorts. They also provided support in everyday management of PwD, often serving as the first contact when caregivers needed assistance.

Barriers to Service Initiation: Inaccessible Services and Financial Aspects

Caregivers reported similar barriers across cohorts. Often, the information about available care services was inappropriate and staff were unhelpful. Caregivers found it time consuming and frustrating to access care, follow-up with services several times, and navigate a fragmented and understaffed bureaucratic system:

They told me I should call there, and gave me 2 or 3 numbers. I called so many times, no one called me back, no one answered at those numbers, you can throw those out. There just isn’t anything [resources] here. (child, GC#2)

It just wipes you out because it’s not, then you’re calling in, you don’t want to like give your whole history to people but you are needing, you feel like you’re in the category of needing help, but you might not meet their criteria. So there’s too many no’s. (child, USC#7)

Financial aspects of services were relevant to participants in both cohorts, reflecting differences in the healthcare systems. In the US, where services are not always fully covered, there were concerns that choosing a lower cost service option might compromise the quality of services:

I would need someone to be with my mom to help her [with cares] if necessary, and those people, you know, who you don’t have to pay $20 an hour or something, that’s a big gap. (child, USC#7)

In Germany, which has an extensive system of free services, financial aspects were mainly mentioned with regard to initiating financial support. This involved burdensome bureaucracy and home assessments:

A doctor from the city [came] to evaluate if my dad, if he really had dementia […] and he was the person checking this, and I though, seriously, I was so nervous […] we don’t just get the help from itself, no, I always demand it. (child, GC#2)

Facilitating Service Initiation: Congruent Identities

Caregivers from ethnic/racial minority groups consistently reported that they strongly preferred interacting with staff with social and cultural backgrounds similar to their own and/or those of the PwD. Such “congruent identities” facilitated trust and made caregivers feel more comfortable:

When I met [this Alzheimer’s Association social worker] a Latina, who understood this disease, I feel in love with this woman […] she has connected me to everything. (child, USC#1)

While participants in both cohorts preferred congruent identities, it was particularly important to how cohorts in Germany accessed services. While US caregivers accessed services directly from the sources mentioned above, in the German cohort caregivers generally initiated services through Turkish-language resources. Caregivers had very high trust for individuals of Turkish heritage, and considered them essential to accessing services:

I got all my information from this information point, [to get] the Turkish information is very hard for us […]. I only know about this service, that’s why. I can’t trust anyone else. (child, GC#2)

These service providers might both provide information and help caregivers navigate bureaucratic challenges in initiating services, as well as function similar to a support group, educating family members and providing encouragement. Many caregivers expressed that without service providers of a similar background they trusted they would not know where to obtain services or become discouraged in doing so:

There was a pamphlet and things like that, but if no one really explains everything to you and if you haven’t experienced it, then you just don’t know. (child, GC#2)

Utilizing Support Services

Service Fit

Caregivers preferred providing care at home, and home care in the form of nursing care, hospice, or respite was heavily used, but overall caregivers were often overwhelmed and needed more in home services. Families were more satisfied when there was a higher level of alignment, or “fit”, between their expectations and the service provider. Fit covered several aspects, including frequency:

It also met my needs when we went into the care group meeting once a month. And that wasn’t like, way over much, but it was enough to look forward to. (spouse, USC#2)

Caregivers also expressed a need to trust service providers; low trust could limit their use of services:

That’s one of the things that makes life much easier for me. If I had to be worrying about, you know, are they being careful with her that she’s gonna fall or, you know, that would be a whole lot more stressful but I trust them. (child, USC#4)

Even if a desirable service was available, its use depended on the specific needs of the PwD. For instance, caregivers might not elect additional services they wanted out of concern that the PwD would be distressed by a stranger taking care of them:

I wanted insurance to pay for home health, a little help, but my father would never [do it]. (child, GC#2)

Congruent Identities and Service Experiences

As in the previous stage of initiating services, while utilizing services caregivers strongly preferred to receive services from individuals with whom they shared a congruent identity. It is important to note that caregivers discussed their experiences in light of desiring congruence rather than feeling they were being disadvantaged; only in one instance did a caregiver cite an instance in which she felt it would have been easier to receive additional care.

Language was the most prominent sign of congruence. Almost all caregivers who were caring for PwD whose first language was not English or German preferred service providers who could speak the langue of their shared background (usually Spanish or Turkish, for the respective cohorts). Caregivers felt the care was improved, because they believed the PwD felt more comfortable hearing their native language, and could better express themselves:

The same language is important, of course my grandmother can speak German or understands German, but not so that she can share her emotions. It’s enough to communicate her basic needs. (grandchild, GC#5)

Shared language entailed understanding the carer and PwD’s background in a way that enabled the staff member to provide trustworthy and helpful advice. A caregiver related an instance in which the PwD was confusing mealtimes, and the caregiver was searching for a way to align the PwD’s expectations with the family’s eating schedule:

Every time I felt my issue was a Latino issue, I wanted to speak to a Latino coordinator or a Latino counselor…So when I got stuck not being able to feed her dinner, the counselor told me, well why don’t you just give your mom some breakfast? Give her some cereal? That offended me. Because if she knew… poor people from Mexico don’t eat cereal. (child, USC#1)

Caregiver recommendations

Participants in both cohorts emphasized care tailored to the specific situation of UMG caregivers and PwD. For members from ethnic or racial minorities, the recommendation was for staff from a similar background at the stage of accessing supports, who could identify potential needs and suggest available resources. Caregivers also recommended employing staff who could communicate in the PwD’s native language in as many settings as possible (e.g. in day clinics, hospitals), and providing informational materials and courses in their language, which would improve communication:

I was born here and grew up here, but a lot of expressions are just easier for me in Turkish. I can explain my feelings better in Turkish than in German and that would be an advantage. (child, GC#1)

Many caregivers felt it was important to care for PwD at home, and in several cases their community norms emphasized caring for family members at home. The German healthcare system allows one family member to be paid for caregiving, which led to a recommendation from members of the German cohort that this program involve more family members.

I wish that one of my relatives, that instead of the day clinic getting all this money, this would rather go to my relatives—who my mother also knows—so that they can care for her […] not strangers, where she doesn’t feel comfortable, and where things can happen. (child, GC#3)

All caregivers from both cohorts recommended education about dementia. Caregivers expressed guidance to learn more about the overall trajectory at the beginning:

I wish they could kind of lay, lay out the path for you, you know when you first start working with them […] In terms of, okay first we have to do this. (child, USC#4)

Discussion

Overall, our findings reinforce some themes in the literature regarding the use of dementia care among UMG, while adding new insights. Those factors influencing the use of services reported in the literature have often been organized around facilitators vs. barriers (Greenwood et al., 2015; Kenning et al., 2017; Mukadam et al., 2011), or attitudes among caregivers (Jones et al., 2006; Lawrence et al., 2008). Other literature has focused on the pathways through which individuals access care, suggesting that caregiver’s experiences may be related to different trajectories of diagnosis and using services (Hinton et al., 2004). We draw from both perspectives to examine the significance of common barriers and facilitators to accessing services along the overall trajectory of dementia care (shown in Figure 2), as this may provide new insights into how to improve care delivery to UMG. We focused on those aspects that were shared across health systems, to identify those major themes that are more likely to be shared among UMG and thus may be leveraged most effectively to improve the provision of dementia care.

Figure 2: Interaction of Barriers and Facilitators to Formal Care Services*.

*Throughout three phases of using formal services, factors at the interface between caregiver situation and health system context function as barriers or facilitators. Some factors are more closely aligned with either caregiving situation and social context or health systems. The same factor could be relevant across different stages.

Participants cited factors similar to those reported by other studies as influencing their use of services (Kenning et al., 2017; Mukadam et al., 2011). In the phase of seeking support, caregivers consistently related that they did not always recognize the need for diagnosis, believing it to be a normal part of aging. While this is common among all PwD and their caregivers, lack of knowledge may be more pronounced among UMG (Connell et al., 2007; Cooper et al., 2010) resulting substantial in diagnostic delays (Clark et al., 2005). This has led to the suggestion that increased education could prompt more UMG families to seek diagnosis (Mukadam et al. 2015). Some evidence exists that distributing educational materials can encourage patients to discuss memory concerns with their primary doctor (Livingston et al., 2017). While very little data exists about the effects of educational interventions on dementia diagnosis among UMG (Mukadam et al., 2013), one study suggested that providing multilingual educational materials and access to culturally congruent care can increase the number of those seeing diagnosis (Seabrooke & Milne, 2009). Our data also suggest that educational efforts sensitive to cultural context may make families aware of the potential benefits of diagnosis and explore how services can be compatible with their needs.

Though participants in both cohorts interacted with very different health systems, almost all caregivers reported barriers while initiating services, in the form of engaging complex, bureaucratic systems. This led to increased caregiver stress and contributed to caregivers foregoing services because of the hurdles involved. These experiences often represent caregivers’ first contact with formal care services, and may contribute to diagnostic delays or lower service use. Surveys have shown that health system context heavily determines the experience of accessing dementia care and facilitating diagnosis (Stephan et al. 2018). To identify needs and navigate the often bewildering array of services, caregivers in our study felt it would be helpful to have a point of contact to help determine which services were needed. This was particularly relevant for racial/ethnic minority groups across both cohorts, who desired interacting with individuals from congruent backgrounds. Having individuals from a similar background in the form of social workers or nursing staff (possibly remotely) available soon after diagnosis to enable initiating care could facilitate the use of formal services.

The recommendation to have an initial point of contact is distinct from dementia case management, which research has shown can assist caregivers and PwD throughout the course of the disease (Thyrian et al., 2017). It builds on proposals to help under-resourced populations ‘navigate’ the healthcare system (Bernstein et al., 2019; Monsees et al., 2020), a emphasizes the stage of initiating care. Deciding to use formal care services is based on several factors, including attitudes, perceived needs, and objective factors like available services or cost (Stephan et al., 2018). As in other studies, our cohort expressed a strong preference for home care. Participants were able to identify and use services that were helpful to them while taking care of family members at home, indicating how a culturally congruent point of contact could inform families about supportive services other than institutionalization. Our data suggest this could be particularly relevant for racial/ethnic minorities, though more research is needed across all underserved groups. The complex interplay of factors that precedes formal service use indicates that a point of contact at the initiation stage could form an integral part of a care pathway for dementia, and it is possible that congruence in areas in addition to ethic/racial identity could positively impact the level of comfort and trust on the part of caregivers.

Across all stages, congruence affected the acceptability, perception of quality and the experience of formal services. Caregivers equated more congruent social identities with better care, because the nursing and other care staff understood the language and culture of the PwD, a finding observed in other studies with dementia caregivers (Rogers et al., 2021; Shanley et al., 2012). While data on racial/ethnic congruence in dementia care is limited, studies across a range of health issues among UMG in the US and Europe have shown that concordance between social identities positively impacts patients’ perceptions of their care. Patients feel more involved in decision-making if their provider shares a similar ethnic/racial background (Cooper et al., 2003; LaVeist & Nuru-Jeter, 2002; Van Wieringen et al., 2002), and utilize health services earlier and more frequently (LaVeist et al., 2003). In some cases treatment may be initiated sooner (King et al., 2004). Even if caregivers in our cohort could in theory access all services, the significant benefit they report from congruent nursing and social work providers suggests that the relative lack of individuals from similar backgrounds providing care represents a potential barrier to utilizing services. These findings are shared among both health systems, highlighting the importance of this factor even beyond care organization and delivery. Congruence may also benefit caregivers directly, as research has suggested that high racial/ethnic concordance between caregivers of PwD and staff providing psychosocial interventions may improve caregiver depression (McGinnis et al., 2006). In our cohorts, UMG caregivers reported significant perceived benefit from the PwD interacting with staff from a similar background. Given the importance of congruence for caregivers and PwD, further work could explore how to increase congruence between families and providers. This may be most directly achieved by increasing the diversity among providers of dementia care services, as has been suggested for other healthcare settings (LaVeist & Nuru-Jeter, 2002).

For UMG caregivers, the use of formal services and the satisfaction reported also depended heavily on the degree of pragmatic fit between their needs and the characteristics of the service provider, which is consistent with existing literature (Greenwood et al., 2015). Our small sample size and the heterogeneity of participants’ backgrounds did not allow any specific conclusions to be drawn about specific types of service, but suggests an area of future research. Features of care services both depend on the health system context, and directly interface with the needs and expectations of caregivers. Characterizing the varied needs of caregivers and piloting different types of services could help align health system resources more closely with the forms of care that caregivers desire. This may represent an opportunity to improve the effectiveness of services, by incorporating specific recommendations of caregivers, about which there is little data (Kenning et al., 2017).

Based on differences across health contexts, we expected to find that affordability would be a barrier to initiating care, in particular with in-home services (Liken & King, 1995; Waldemar et al., 2007). Specifically in the US, there are significant disparities in receipt of care services, with lower-income individuals bearing more of the care burden (Kelley et al., 2015). However, caregivers reported that costs were not a significant hurdle, but understanding how to access affordable service did impact overall satisfaction. Providing caregivers with counseling around financial, advance care planning, and support issues have shown increased satisfaction among caregivers (Noel et al., 2017). The financial aspects reported in our research are likely not unique to UMG, and their consistency across health contexts suggests that all caregivers might find it helpful to have more straightforward systems around financial assistance and counseling. Such financial counseling could also be provided by a point of contact as soon as services are initiated to provide a more comprehensive overview of available services for caregivers (Samsi & Manthorpe, 2014).

Our findings provide direction for further targeted investigation into public health and care engagement strategies for understudied and underserved caregiving populations. Research on informal networks could identify opportunities for increased education or community resources to direct individuals towards diagnosis and care resources. Materials should be appropriate to specific groups, and their effectiveness could be assessed in terms of effects on increasing timely diagnosis and caregiver satisfaction. Though literature shows patients and caregivers prefer to have congruent social identities with physicians and other providers, there is only limited evidence about the effects of convergent identity on outcomes in dementia care. Similarly, while comprehensive counseling improves satisfaction of caregivers of PwD, the benefits of congruent identities for care navigators who share a cultural/ethnic background with caregivers and PwD is unknown. Research is needed about how caregivers interact with individuals from congruent backgrounds, and how care is affected. Similarly, information about the impact of congruent social identities in care settings could inform development and delivery of more inclusive and effective care service.

Our data have important limitations. While we used a shared interview framework, there were some differences in implementation (e.g. phone vs in person interviews) due to pragmatic considerations. Recruitment in the German cohort was difficult. On the one hand, prospective participants indicated that this was largely due to the complexity of the consent process. On the other hand, this also illustrates the remoteness or even skepticism of this group towards formal care and/or the health care system. This exploratory study used small sample sizes and differing cohorts (in terms of racial/ethnic makeup, immigration status, and types of healthcare services), and is not a suitable basis for broad generalizations, but was designed to generate insights into cross-system barriers and facilitators to care use. Our data suggest that factors related to ethnic/racial background are particularly relevant, but we did not establish any factors that may have been more directly tied to socio-economic disparities, or living in an underserved area. There are likely additional barriers that are specific to group and situation that may be identified through further sampling.

This study compared experiences among UMG with formal caregiving services for dementia in the US and Germany, examining interactions at the interface between the healthcare system and caregivers’ social context. Despite differences in healthcare systems, similar barriers and facilitators were identified, whose importance depends on whether caregivers are in a stage of initiating, seeking, or utilizing care. Throughout all stages, early education and guidance for caregivers, culturally congruent care in which service providers more closely mirror the diversity of the populations they serve, and services that can be straightforwardly and reliably accessed emerged as being particularly salient. While these factors are likely to be relevant for many caregivers, our study suggests they are especially important for UMG groups. Targeting these areas may provide concrete opportunities for intervention, to make it easier for UMG to use formal care services, and address disparities in dementia care more directly.