Barriers and Facilitators to Home- and Community-Based Services Access for Persons With Dementia and Their Caregivers

Abstract

Objectives

The United States has seen increasing shifts toward home- and community-based services (HCBS) in place of institutional care for long-term services and supports. However, research has neglected to assess whether these shifts have improved access to HCBS for persons with dementia. This paper identifies HCBS access barriers and facilitators, and discusses how barriers contribute to disparities for persons with dementia living in rural areas and exacerbate disparities for minoritized populations.

Methods

We analyzed qualitative data from 35 in-depth interviews. Interviews were held with stakeholders in the HCBS ecosystem, including Medicaid administrators, advocates for persons with dementia and caregivers, and HCBS providers.

Results

Barriers to HCBS access for persons with dementia range from community and infrastructure barriers (e.g., clinicians and cultural differences), to interpersonal and individual-level barriers (e.g., caregivers, awareness, and attitudes). These barriers affect the health and quality of life for persons with dementia and may affect whether individuals can remain in their home or community. Facilitators included a range of more comprehensive and dementia-attuned practices and services in health care, technology, recognition and support for family caregivers, and culturally competent and linguistically accessible education and services.

Discussion

System refinements, such as incentivizing cognitive screening, can improve detection and increase access to HCBS. Disparities in HCBS access experienced by minoritized persons with dementia may be addressed through culturally competent awareness campaigns and policies that recognize the necessity of familial caregivers in supporting persons with dementia. These findings can inform efforts to ensure more equitable access to HCBS, improve dementia competence, and reduce disparities.

An estimated 5.8 million people in the United States live with Alzheimer’s disease and related dementias, and it is estimated that this number will more than double by 2060, with an increasingly racially and ethnically diverse population living with dementia (U.S. Centers for Disease Control and Prevention, 2019). A majority of persons with dementia will need long-term services and supports (LTSS), provided either formally or through family and other unpaid caregivers (Leff & Stevenson, 2021). The majority of paid LTSS in the United States is sponsored by Medicaid, and Medicaid has increasingly emphasized the shift of LTSS from institutional to home- and community-based services (HCBS; Reaves & Musumeci, 2015). This shift is intended to better meet consumer preferences to remain in their home or community, to provide equitable LTSS options as required by the Americans with Disability Act and Supreme Court’s Olmstead decision, and as a potential cost-neutral or cost-saving alternative to institutional care (Hado, 2021; O’Malley Watts, 2020). However, persons with dementia are at higher risk for nursing home placement compared to persons with other chronic conditions (Wang et al., 2021). HCBS may be particularly beneficial to persons in the early to moderate stages of dementia (e.g., those with less severe functional impairment) in helping to delay institutionalization, though more evidence is needed to demonstrate consistency of HCBS preventing institutional placement (Duan-Porter et al., 2020). Home health care services are the only required HCBS for all states participating in Medicaid; states otherwise vary in their Medicaid waivers and the types of HCBS offered (Musumeci et al., 2020). However, exemplar HCBS for persons with dementia may include services such as personal care assistance, transportation, social and/or medical adult day programs, meal and nutrition programs, technology supports, respite care, and caregiving trainings and supports.

To date, research has largely neglected to examine whether there are unique HCBS access barriers or facilitators specific to persons with dementia in this contemporary context of “rebalancing” LTSS from institutional settings to home and community settings. Additionally, there has been little attention to potential disparities in access, for example, across racial and ethnic groups or in rural versus metropolitan settings. For example, a 2018 study explored the challenges of HCBS coordination for older adults and cited a lack of knowledge of available services, insufficient availability of services, and cost of services as barriers to HCBS among older adults (Norman et al., 2018). However, this study focused on the coordination of nonmedical social needs among older adults and did not explore barriers among those with dementia specifically. Another exemplar study examining barriers to home- and community-based placement after hospital discharge found that the prerequisite need for unpaid family caregiving, lack of staffing, and inadequate services limited referral to and use of HCBS (Miller et al., 2019). However, this study focused on barriers and facilitators among Veterans served by the Veterans Administration and did not explore barriers among those with dementia. Neither of these studies examined disparities across racial or ethnic groups.

Potential for Exacerbation of Disparities

Research has previously identified HCBS disparities for people living in rural areas in the United States (Siconolfi et al., 2019). These disparities may be exacerbated for persons with dementia because of the barriers to care that they face, which can include stigma, differences in cultural beliefs, and a lack of information about dementia (Alzheimer’s Association, 2021). In addition to rural–urban disparities, racial and ethnic disparities in HCBS access may be intensified for persons with dementia as studies have found HCBS access disparities among dually eligible older adults (but not persons with dementia specifically) and disparities in access to institutional LTSS among rural and minoritized persons with dementia, which may extend to HCBS (Gorges et al., 2019). It is important to address potential HCBS access disparities, as minoritized persons with dementia and their caregivers anticipate or experience significant barriers to accessing dementia medical care (Alzheimer’s Association, 2021). Along these lines, some minoritized racial and ethnic populations (e.g., Black and Hispanic older adults) experience disparities in dementia, its care, and some outcomes compared with non-Hispanic White peers (Kornblith et al., 2022; Lin et al., 2020; Lines et al., 2014; Quinones et al., 2020; Temkin-Greener et al., 2021; Tsoy et al., 2021).

However, no studies have specifically examined differences in HCBS access among persons with dementia in urban–rural areas and racial and ethnic groups, or how access impacts health outcomes and quality of life for persons with dementia and their caregivers. Additionally, we are not aware of any studies that have explored HCBS access through the social–ecological model.

Social–Ecological Model

The social–ecological model conceptualizes health as being impacted by the macro to micro-level factors at the community, interpersonal, and individual levels, and as being affected by the interactions between political systems, social environments, infrastructure, culture, relationships, and the individual (Bronfenbrenner, 1979; U.S. Centers for Disease Control and Prevention, 2022). The social–ecological model is useful for identifying multilevel, interdependent factors that have both direct and indirect effects on health and promotes the development and integration of approaches to address health problems on multiple levels. Recent examples of its use in HCBS-focused research include a scoping review of home care utilization (Mah et al., 2021), and a qualitative study of barriers and facilitators for home modifications (Ellison et al., 2021).

The Present Study

To address these gaps in knowledge, we examined differences in HCBS access for persons with dementia by incorporating a variety of stakeholder perspectives in a qualitative study. To obtain a more comprehensive understanding of the factors that limit and facilitate access to HCBS among persons with dementia, we interviewed Medicaid administrators, HCBS providers, and advocates for persons with dementia from a range of states in the United States. We organized our findings by levels in the social–ecological model, and sought to inform efforts to ensure equitable access to HCBS, improve health system dementia competence, and reduce disparities among rural and minoritized persons with dementia.

Method

We collected and analyzed qualitative data from stakeholder interviews conducted from July 2019 through September 2020. We conducted 35 in-depth stakeholder interviews (49 interviewees) across 11 U.S. states. We interviewed three types of stakeholders, including Medicaid administrators who coordinate their state’s HCBS waivers, advocates for persons with dementia and caregivers (e.g., community liaisons), and HCBS providers and agency managers. The number of interviews for each stakeholder type across states was similar.

Recruitment

Our sampling plan was designed to interview stakeholders from a diverse set of states, selected to reflect multiple geographic regions of the United States, diversity in population density, HCBS access based on LTSS Scorecard rankings (Reinhard et al., 2017), and participation in rebalancing initiatives (e.g., Balancing Incentive Program, Money Follows the Person, and PACE). To protect participant privacy in the context of small populations (e.g., state Medicaid officials), we do not disclose states that were sampled. The HCBS providers and advocates were identified through public document mining (e.g., state policy documents, committee rosters, and provider registration databases), search engine scans (e.g., state-level HCBS provider organizations and their rosters), and nominations from other interviewees.

Interviewees were initially contacted by email, with follow-ups to nonresponders. We sent an initial email, followed by 5-day and 8-day email messages, and a follow-up phone call, if needed, after the 8-day message. Email and phone scripts described the research group, the study, and the role of interviews in the context of the larger study. We contacted approximately 180 individuals across stakeholder types and states. Only one state’s Medicaid administrator declined participation (no reason provided). Table 1 shows the number of interviews conducted by stakeholder type and by state.

Table 1.

Stakeholder Interviews by State and Stakeholder Type

	Number of interviews
	Medicaid administrators	HCBS providers	Consumer advocates
State 1	1	1	1
State 2	1	1	1
State 3	1	1	1
State 4	1	1	1
State 5	1	1	1
State 6	1	1	2
State 7	1	1	1
State 8	2	1	1
State 9	0a	1	1
State 10	1	2	1
State 11	1	1	1

Note: HCBS = home- and community-based services.

^aMedicaid administrator declined to participate.

Data Collection

Two members of the research team, PhD- and Master’s-level researchers trained in qualitative methods, conducted 60-min individual telephone interviews using semistructured interview protocols tailored to each stakeholder type. Protocols were developed by the research team consisting of experts in dementia, long-term care, HCBS, gerontology, and health care disparities (urban–rural and marginalized racial and ethnic groups). Protocols were based on our prior qualitative HCBS research (e.g., Siconolfi et al., 2019) and adapted to focus specifically on HCBS access for persons with dementia.

Interviews assessed barriers to HCBS access for persons with dementia in their state, whether there were unique barriers faced by those living in rural areas or by racial and ethnic minority persons with dementia, factors that determine access to HCBS, understanding how family caregivers interface with and supplement formal HCBS, and how that differs based on family structures, dementia symptoms, socioeconomic status, and access to HCBS. Key discussion questions are shown in Table 2. Following verbal informed consent, interviews were digitally recorded and professionally transcribed; one interview was captured via transcript-style written notes because they declined to record. When not prohibited by their employer’s policies, interviewees received a $100 honorarium.

Table 2.

Key Interview Discussion Questions from the Interview Guides

• What does your organization do in the context of HCBS for persons with dementia? Can you tell us a little bit about the beneficiaries you work with?

• What is the landscape for HCBS services in your state? For example, what kinds of HCBS services are typically used? Are there new or changed services on the horizon?

• What is the typical path that a Medicaid-eligible person with dementia would follow to access HCBS in your state? (e.g., eligibility pathways, connections to HCBS services, service utilization).

• Do the pathways look different for individuals: coming from urban versus rural environments or from different racial and ethnic groups? … from any other groups of people?

• Do the pathways look different for individuals without a family member helping them?

• What are some of the access barriers to HCBS services for Medicaid-eligible persons with dementia?

• Do HCBS pathways or utilization vary by stage of dementia? If so, how? • Are some groups of people more likely than others to access or use HCBS instead of institutional forms of care?

• How are family caregivers involved in navigating HCBS with the person with dementia? What services do family caregivers utilize or need themselves?

• Do you have any evidence about how HCBS affects health or quality of life for persons with dementia? For caregivers?

• (Asked of service providers) What kinds of HCBS services do you provide? Are there other services that you provided in the past, but not anymore? Are there services offered by your fellow providers offer that you do not offer?

Note: HCBS = home- and community-based services.

Analysis

Two researchers (PhD- and Master’s-level) analyzed verbatim interview transcripts. Data were coded using a standardized codebook, developed over three iterations (e.g., alpha, beta, and final versions) based on the interview guides and emergent themes. Transcripts were coded using applied thematic analysis, and we looked for repetition and variation across content to identify common themes. Multiple codes could be applied to a given excerpt. Coding took place in Dedoose. Coders independently identified themes, discrepancies, trends, and anomalies, and examined these by respondent characteristics. Coders met regularly to discuss progress and questions about code application; areas of disagreement were resolved via discussion and consensus. We determined saturation based on the redundancy of findings across interviews. By the time we completed all planned interviews, findings were highly consistent, and no new themes emerged. To further ensure validity, reliability, and objectivity, we undertook three structured data debriefings with the larger research team over the course of data collection (at approximately 33% complete, 66% complete, and 100% complete milestones). The study was approved by the Human Subjects Protection Committee at RAND.

Results

We present the hierarchical levels of the social–ecological model that we used to structure our results in Figure 1. At the infrastructure and community levels, we discuss health system–related factors such as provider-driven effects, infrastructural elements including technology and transportation, and the dynamics of culture in the HCBS ecosystem. At the interpersonal level, we focus on how caregiving structures affect HCBS access, and at the individual level, we present findings on how socioeconomic factors and attitudinal dispositions affect access and connections with the HCBS system. A summary of the findings is shown in Table 3.

Figure 1.

HCBS access barriers and facilitators organized by the hierarchical levels of the social–ecological model. HCBS = home- and community-based services.

Table 3.

Summary of Results: Stakeholders’ Perceived Barriers and Facilitators to HCBS Access for Persons with Dementia

	Infrastructure and community
	Barriers	Facilitators
Health system	• Lack of memory screens, cognitive assessment, and dementia diagnosis • Inadequate physician training and skills • National shortage of neurologists • Limited HCBS provider availability, capacity, and workforce shortages • Challenges related to multimorbidity • Limited competency with less common forms of dementia (i.e., FTD)	• Dementia continuing education and training for medical professionals • Efforts to promote early detection and diagnosis • Timely referrals to HCBS by providers • Patient-centered care • Telehealth • Care coordination with comorbidities
Technology	• Limited technology literacy among older adults and persons with disabilities (general barrier)	• Assistive and remote monitoring technology (i.e., fall sensors, GPS) • Use of home webcams, telehealth • HCBS awareness through social media
Transportation	• Limited transportation, especially in rural areas • Costly/unaffordable transportation • Liability concerns, unreliable services, and dementia competency • Lengthy commute times	• Transportation provided to clients • Provider partnerships with transportation services • Dementia training for transportation providers (i.e., drivers)
Cultural competence	• Differences in cultural values and norms • Language barriers • Misconceptions about HCBS • Lack of recognition of dementia • Historical trauma, discrimination, distrust • Lack of cultural competency	• Community partnerships and outreach to raise awareness of HCBS in underserved communities • Consumer-directed support is more acceptable for some groups • Bilingual staff, translation services
	Interpersonal
	Barriers	Facilitators
Formal and family caregivers	• De facto necessity of family caregivers • Barriers for nonfamilial caregivers • Difficulty obtaining guardianship/POA • Familial obligation/duty to provide care • Poor recognition of dementia symptoms • Tension between the individual’s preferences and caregiver/provider beliefs about potentially beneficial services	• Advocates encourage designation of healthcare proxy and/or POA • Family detects measurable change • Strong informal supports • Guardianship for persons without family caregiver(s) • Caregivers’ recognition of their role • Provider engagement with family
	Individual
	Barriers	Facilitators
Knowledge and attitudes	• Need for dementia education and training • Lack of awareness of HCBS options • Dementia stigma • Fears, doubts, and misconceptions about dementia, HCBS, and Medicaid	• Outreach, education, and training regarding dementia, HCBS, and Medicaid • Information on clinical research trials • Caregiver training, support groups • Legal, financial planning services
Socioeconomic	• Financial barriers; inability to pay out-of-pocket or meet Medicaid eligibility • Unstable housing	• Home or environmental modifications • Assistance securing stable housing or subsidized housing

Notes: FTD = frontotemporal dementia; HCBS = home- and community-based services; GPS = global positioning system; POA = power of attorney.

Infrastructure and Community

Health system

Barriers

Stakeholders widely agreed that barriers at the health system level were significant obstacles to HCBS access for persons with dementia. Interrelated barriers in the clinical setting included difficulty obtaining formal cognitive assessments and a dementia diagnosis when appropriate, clinicians’ failure to conduct memory screens as part of routine care, clinicians’ lack of training and knowledge regarding dementia, and clinician discomfort addressing these issues (e.g., making and relaying dementia diagnosis). Stakeholders also believed that clinicians often defer to patients and caregivers to broach concerns about cognitive impairment, or that documentation and communication regarding a dementia diagnosis may not be shared with patients and caregivers. As one advocate explained:

There’s a disconnect between who is responsible for initiating conversations around changes in cognition. The physician is expecting the patient to bring up the issues and concerns, and the patient is expecting the doctor to bring up the issues and do some screening.

These are significant barriers to HCBS access because without a cognitive assessment and formal diagnosis when appropriate, persons with dementia are not referred to HCBS and are less likely to connect with services.

Stakeholders also cited the national shortage of neurologists in the United States as a barrier to timely diagnosis; access was especially limited in rural areas. Limited provider availability and workforce shortages were also a significant barrier, both in general and especially in rural areas. This included neurologists, physicians specialized in dementia, nurses, and neurology nurse practitioners or physician assistants. Finally, stakeholders also perceived that a person with dementia with comorbidities and co-occurring conditions, such as obesity, mental health conditions, hearing loss, or acute level of medical needs, experiences more difficulty navigating the HCBS system.

Another stakeholder, an advocate for persons with frontotemporal dementia (FTD), also described unique challenges experienced by persons with FTD. For example, they explained that FTD is often misdiagnosed due to younger onset relative to other causes of dementia, and providers are less familiar with FTD presentation, which may be confused for depression or psychosis.

Facilitators

Stakeholders also identified health system–related factors that may facilitate HCBS access. Efforts to improve the diagnosis of dementia included training opportunities for primary care providers, such as clinical fellowships with state experts, and state bills requiring dementia-related continuing medical education for medical professionals. Several advocates described other initiatives to educate clinicians and health care systems on recognizing early signs of dementia and how to support persons with dementia, including persons with FTD and persons with younger-onset dementia. For example, one administrator described diagnostic algorithms being used to streamline diagnoses, alongside efforts to promote faster referrals to services following the diagnosis. Earlier detection and diagnosis were believed to result in earlier access to services, greater patient centeredness in care planning and decision-making, and reduced risk for early institutionalization. Stakeholders also reported that provider partnerships with transportation services can help facilitate access to more distant providers. Telehealth programs were also cited as a tool to help to connect persons with dementia with physicians and specialists, facilitating care coordination when they have multiple conditions (e.g., behavioral health needs).

Technology

Barriers

Stakeholders did not identify technology-related barriers specific to dementia. Instead, technology-related barriers were those widely acknowledged as barriers to HCBS for older adults and persons with disabilities in general (e.g., technology literacy).

Facilitators

Stakeholders described several ways that technology can facilitate HCBS for persons with dementia. For example, we heard that some persons with dementia and their caregivers utilize assistive technology and remote monitoring technology, such as fall sensors, webcams, alarm systems, GPS tracking, and smart home hubs. One provider believed that cameras in the home are a useful tool for both family caregivers and service providers to provide reassurance and ensure the quality of care:

Something that has become a huge tool in home care is cameras in the home. And I know my aides hate that, but it is a godsend. The family member can feel at ease. ‘I’m at work, I can look at the camera and see how mom’s doing.’ But as an agency, I know what my agent is doing.

As described earlier (see Health system — Facilitators), telehealth was also identified as a way to promote access to clinicians for persons with dementia. Last, a few advocates described their use of social media to raise awareness of HCBS and dementia-friendly activities in their local community to connect with and educate family caregivers.

Transportation

Barriers

Limited or nonexistent transportation was identified as a pervasive barrier to HCBS; this was especially true for rural areas. Beyond transportation-related barriers that affect older adults and persons with disabilities in general (e.g., limited services, prohibitive cost to consumers, or providers), stakeholders identified several barriers that were specific to persons with dementia. These included liability concerns (e.g., falls when persons with dementia transition in/out of vehicles), unreliable services (e.g., drivers fail to show up), and dementia capability (e.g., drivers failing to ensure that the individual successfully reaches the intended destination). For example, an advocate explained:

Transportation seems to be an issue for individuals who are lower income, more of the [states’ duals program]. A lot of the systems we have out here for transportation, again, it’s curb-to-curb rather than door-to-door, or they’re just not reliable, especially for someone with dementia or an older caregiver.

Long commute times to community-based services can also be a barrier, and symptoms related to dementia (e.g., memory, communication, and cognitive issues) can present challenges for transportation over long distances. For example, one stakeholder also believed that some consumers’ fear of incontinence during long commutes can deter them from using transportation services or attending community-based services altogether.

Facilitators

Identified transportation facilitators were limited. One service provider explained their collaboration with a paratransit agency, and how they provide dementia training for the drivers. Following training, they observed improved quality of service and consider the transportation provider a “partner in care.”

Cultural competence of the HCBS ecosystem

Barriers

Stakeholders reported that persons from certain racial, ethnic, and cultural backgrounds can experience barriers to HCBS in general. Primary sources of these barriers were differences in cultural values (e.g., preferences or perceived obligations to care for family members) and a lack of non-English language services and information. Other stakeholders pointed to cultural biases toward keeping family members at home and resisting supportive services due to distrust of the government and misconceptions about HCBS. For example, one Medicaid administrator reported that “… there’s a lot of trust-building and relationship-building that has to happen, especially with some of our underserved or underreached communities …” Another provider elaborated:

What’s coming to mind are undocumented or cultural [barriers]. In Spanish [Hispanic] communities, what I know – they’re not as trusting … it’s not applicable to all and [it’s] getting better … but the family is challenged to accept care – there’s often a misunderstanding – it doesn’t mean death and it doesn’t take them away from their ability to care for their loved one. There are some non-Spanish speaking families that are misunderstanding too, and they say, ‘We want them [loved one] to stay in our home,’ and of course – they’re going to stay in the home.

Stakeholders also noted that some cultures may not recognize dementia, for example, “that is a big disparity among cultures, is the understanding of what [dementia] is. Some people view it as a mental health issue versus a brain disorder.” Historical trauma and discrimination were identified as other underlying reasons why some communities (e.g., persons without immigration documentation, Native American and indigenous persons, New American or immigrant persons, and LGBTQ+ persons) are hesitant to seek eligibility or connect with HCBS. Other cited barriers included the need for cultural competency in connecting ethnic groups with providers, challenges for within-group providers becoming licensed and trained to provide culturally appropriate services, and the need for relationship building with underserved and minoritized communities.

Facilitators

Several advocates described collaborating with community partners to bring awareness of HCBS to different cultural communities, and other advocates received grant funding to expand outreach efforts specifically to underserved and minoritized communities (e.g., Latino, Black, and LGBTQ+ communities). Other facilitators were typically applicable to older adults and were not specific to dementia. For example, these included consumer-directed support models (which were perceived as more culturally acceptable for minoritized groups) and language accommodations (e.g., translation services and bilingual staff) that help connect members of minoritized communities to HCBS.

Interpersonal

Formal and family caregivers

Barriers

Barriers related to formal and family caregivers (defined as generally unpaid caregivers such as a spouse, partner, family member, friend, or neighbor who provides assistance)—or a lack thereof—were some of the most prevalent themes that surfaced during our interviews. The most significant barrier is the de facto necessity to have a family caregiver alongside formal HCBS; we heard numerous examples of the challenges persons with dementia face without a family caregiver. For example, the current ecosystem relies on family caregivers to help persons with dementia navigate the Medicaid eligibility process, engage in person-centered care planning, ensure the quality of services, and fill gaps in formal HCBS. Stakeholders also perceived that persons with dementia but without family caregiving support were less likely to receive formal clinical assessments of cognitive function, were more likely to prematurely transition to an institutional setting, or were at risk for other negative outcomes including social isolation and homelessness. One administrator said:

What’s relevant is their informal support system. I mean, do they have trustworthy caregivers that are available 24/7? That can extend somebody’s success in the community … For somebody that doesn’t, a new diagnosis of dementia could unfortunately mean institutionalization.

Stakeholders reported that in some cases, nonfamilial unpaid caregivers (e.g., neighbors) could provide some of these familial supports (e.g., informal checks on well-being). At the same time, stakeholders perceived that nonfamilial unpaid caregivers were less likely to seek HCBS on behalf of persons with dementia, were less familiar with private financial information and, therefore, less able to assist in that capacity (e.g., assist with bills and help navigate Medicaid eligibility), and typically lacked access to health information (i.e., due to HIPAA restrictions). These constraints significantly limited nonfamilial unpaid caregivers’ ability to fully overcome the access barriers to HCBS presented by a lack of familial caregiver(s).

When available, guardianship was a potential enabler of HCBS for persons with dementia without family or other unpaid caregiver support. However, stakeholders identified barriers to this enabler. For example, persons with dementia who have cognitive impairment may be unable to execute a power of attorney, there are insufficient public guardians available (particularly in rural areas), and associated costs (e.g., court and attorney fees) may be prohibitive. Several advocates reported that their organizations work to encourage persons with dementia that live independently to think about someone they trust that could be designated as a surrogate decision maker (e.g., power of attorney).

Stakeholders also explained that caregivers’ beliefs and attitudes regarding familial duty and obligations were also a potential barrier to HCBS seeking. This barrier was especially potent for spousal caregivers, as an administrator described:

I think the spouses are much more willing to provide the care for a longer period of time, are less willing to reach out, because they feel it’s their duty to do it, and they may be very protective of their loved one … they just don’t want to delegate the care to someone else, either out of obligation or just concern.

Stakeholders also perceived that some spouses may fail to recognize or acknowledge gradual changes in cognition or behavioral symptoms because of their daily proximity to the persons with dementia, or to recognize that those changes are related to dementia; therefore, they delay or fail to seek a diagnosis or initiate HCBS. Conversely, one stakeholder described an uptick in referrals and assistance seeking following the holidays, when adult children visiting parents “see a measurable change.” Another access barrier was described by one adult day provider: Family members may not “push the limits” when the care recipient refuses to attend adult day services. Caregivers may struggle to balance their own views on what might be best (“tough love”) versus the autonomy of their family member with dementia. An adult day provider described this tension:

… they’re still an adult and you want to respect them and their freedom of choice as much as you can, but when they can’t see the whole picture and how this [adult day program] would be really good for them, and the person who’s trying to care for them or if they can’t make decisions that are for their own well-being and safety, that’s where that gets in that tough gray zone.

Facilitators

Generally, we heard that persons with dementia with strong support systems at home tend to be more successful with HCBS access and avoiding early institutionalization. Guardianship was identified as a facilitator of HCBS access for persons with dementia, particularly for those experiencing greater severity of dementia symptoms and without a person(s) who could serve as a family or other unpaid caregiver, because guardians as decision makers can apply to HCBS programs, provide informed consent, and supervise paid caregivers. However, as noted earlier, stakeholders described barriers to guardianship itself. Other identified facilitators were not specific to dementia, and included family caregivers’ recognizing themselves as such, the use of respite services and supports to sustain their caregiving, and providers’ engagement of family members and maintenance of open communication channels.

Individual

Knowledge and attitudes

Barriers

Knowledge and attitudinal barriers also emerged repeatedly. Stakeholders reported a dearth of dementia-related education for communities; specific topics included dementia symptoms and pathology, Medicaid eligibility, costs of caring for persons with dementia, available HCBS and the potential benefits these services provide, and how to identify and select HCBS providers. Stakeholders felt that persons with dementia and caregivers are often unaware of what services they need, what services are available in their area, which services they may qualify for, how to research those services, or how to initiate services. As one advocate shared, “I think one of the biggest challenges is just helping individuals understand what resources are out there and how to tap into them.” Interview participants also emphasized that available information can be overwhelming and difficult to comprehend, particularly for those with lower health literacy.

Other socioeconomic and community-level factors, such as Internet access barriers, lower education, language barriers, and rural settings also contributed to consumers’ lack of awareness of HCBS options for persons with dementia. One advocate noted that persons with dementia and their caregivers who reside in rural areas need to travel long distances to obtain information about their diagnosis and HCBS, and another consumer advocate for persons with FTD noted that there is no central source of information about services for persons with FTD.

Stakeholders also expressed the belief that social stigma or lack of dementia awareness in the community meant that some family members feel embarrassed by observable behaviors that persons with dementia may exhibit in public. In turn, caregivers may deny or hide the diagnosis, be reluctant to engage fully in the community, and not seek outside support. As an administrator described:

We’re raising awareness around dementia … Because what we do see a lot is that caregivers are really isolated once the person that they’re caring for begins to manifest some of the real more significant symptoms of dementia: that confusion, that sort of lack of inhibition, the lack of filtering, the inappropriate questioning, the mistaking somebody for somebody else. And when that starts to happen, it can become really embarrassing and stigmatizing for a caregiver, so much so that they may actually restrict their own activities and not take that person into community.

A range of misconceptions held by family caregivers and persons with dementia were also perceived as barriers to access. These included perceptions that dementia necessitates institutionalization or that accessing services will lead to institutional placement. Another identified barrier was laypersons’ belief that dementia is a normal part of aging. Persons with dementia and caregivers may also be reluctant to use home care services (e.g., due to fear of strangers in the home).

Facilitators

Many stakeholders emphasized that training and education around dementia for caregivers, alongside HCBS, are key to averting unnecessary institutionalization and described efforts to address these barriers. For example, some advocates discussed their community outreach and education programs. Specific informational targets included research and clinical trials, training and support for the caregiver, education specific to Medicaid eligibility, and information on legal and financial planning services. Some stakeholders also described efforts to destigmatize Medicaid and HCBS. Community outreach also included engaging community professionals, such as law enforcement and faith-based community leaders. Service providers also described advertising their services to promote awareness (e.g., in local newspapers, branding on provider vehicles, brochures in local clinicians’ offices, etc.). Caregiver support groups were also seen as an opportunity to raise awareness, promote connections between caregivers and normalize their experiences, reduce stigma, and disseminate information about local services.

Socioeconomic status

Barriers

Financial barriers also emerged, though they were typically not specific to dementia. For example, many stakeholders pointed to consumers’ inability to afford services out-of-pocket, consumers’ inability to meet Medicaid financial eligibility requirements, or the tension between these two. Housing instability was also relevant, as stable housing is often a prerequisite for remaining in the community and receiving HCBS. Stakeholders named a range of minoritized populations who experienced these financial barriers, including African American communities, Latino communities, persons without immigration documentation, and Native American communities and tribes.

Facilitators

Stakeholders identified relatively few socioeconomic facilitators to HCBS access for persons with dementia, relative to the barriers identified. Although it had not been enacted yet, stakeholders in one state hoped that a potential new program to fund home modifications would facilitate aging in place for older adults in general. Some service providers support persons with dementia with securing stable housing, and one provider shared that they assist older adults, including persons with dementia, with subsidized housing renewal paperwork.

Discussion

This study addresses significant gaps in the literature by synthesizing qualitative perspectives on the barriers and facilitators to HCBS access for persons with dementia from key stakeholders in a diverse sample of U.S. states. We identified several new findings that provide important information to help strengthen dementia competency and support for health care systems, diverse communities, and formal and family caregivers.

First, our interviews shed light on several ways that providers and the current health care ecosystem may present or exacerbate HCBS barriers or facilitate access to HCBS for persons with dementia. For example, stakeholders reported that formal cognitive assessments and memory screens are not being conducted regularly with patients, and inadequate training leaves providers uncomfortable discussing cognitive issues with patients. Indeed, one study examining factors associated with cognitive impairment evaluations found that a significant portion of patients with dementia reported that they had not received any clinical cognitive evaluation by a physician (Kotagal et al., 2015) and other research indicates that underdiagnosis may be exacerbated in minoritized and stigmatized populations (Amjad et al., 2018). This is consistent with the facilitators raised by stakeholders, who emphasized that efforts to improve the evaluation and diagnosis of dementia through improved training, education, and diagnostic algorithms would help to alleviate barriers to accessing HCBS. This suggests that efforts to continue improving continuing medical education and practice-based training, build cultural competency in serving minoritized persons with dementia, and incentivize routine cognitive assessments (e.g., through reimbursement) are important policy objectives.

The few technology and telehealth-related facilitators raised by stakeholders also point to promising areas for expanding access to HCBS. For example, assistive technology, remote monitoring, and telehealth may promote better care coordination and confidence across family caregivers, homecare providers, clinicians, and the person with dementia. These facilitators could be effectively leveraged to improve access to services, particularly among those who reside in rural areas. Finally, the observations about unique challenges faced by persons with FTD highlight that more research is needed to explore the unique types of barriers potentially experienced by persons with dementia with other less common forms of dementia (e.g., vascular dementia, Parkinson’s disease, etc.).

Several findings also point to the need for a more robust, accessible health care workforce, including specialized clinicians (e.g., neurologists) and home care providers (e.g., home health aides). Notably, stakeholders omitted discussion of other specialists (e.g., geriatricians and psychiatrists) pertaining to dementia diagnoses or workforce shortages impacting persons with dementia, which could also indicate a limited view of the many touchpoints and opportunities to provide clinical services for persons with dementia. The workforce shortages of licensed professionals trained in caring for adults with cognitive impairment or dementia are projected to increase significantly, particularly in rural areas, pointing to the urgent need to enhance recruitment and retention of dementia specialists, increase the expertise and dementia competence for all health care providers, and consider new care models to better meet the demands of a growing population of persons with dementia (National Academies of Sciences, 2021). Though we found few facilitators to HCBS access pertaining to the health care workforce, a few stakeholders noted that alternative care models, such as consumer-directed support models, would be an effective strategy to fill gaps in addition to enabling persons with dementia to stay in their home and community longer while providing care in concordance with their culture and language preference. Telehealth as a technology-related facilitator could also increase access to dementia care specialists.

Second, limited transportation is also a critical barrier to address, and has previously been recognized as a well-documented barrier to successful community living and integration for older adults in general (Syed et al., 2013). This also rang true in our study for persons with dementia, especially for those in rural areas. Transportation barriers are largely driven by minimal public transportation options (particularly in rural areas) and services that are unreliable or not dementia competent. Additionally, although partnership opportunities with paratransit agencies have been successful in connecting persons with dementia to HCBS, they require sufficient demand, which may be further challenged in rural areas by the geographic dispersion of consumers. Furthermore, public transportation scarcity also has implications for HCBS workforce recruitment and retention, which may diminish workforce capacity (Bernacet et al., 2021; Campbell, 2021). Direct care workers receive low wages, limited reimbursement for mileage, and overall are socioeconomically marginalized (Butler et al., 2014; Campbell, 2021; PHI, 2021).

Third, policies that recognize the invaluable role of family caregivers in supporting persons with dementia and supplementing HCBS can facilitate HCBS access, potentially forestalling institutionalization. We found that caregiver supports and services are essential for sustaining family caregiving, and that caregiver services (e.g., respite services and support groups), are instrumental in facilitating access to and utilization of HCBS services by persons with dementia. There is also a clear need to provide greater assistance to persons with dementia without familial caregivers to help them navigate the financial and legal landscape associated with Medicaid eligibility. Stakeholders described the potential for guardianship support for persons with dementia but also identified existing barriers to its real-world application (e.g., cost and availability). Additionally, other challenges associated with the current state of guardianship programs (e.g., elder abuse and exploitation) make clear the need to improve these programs (Garland, 2017; Nwakasi & Roberts, 2022). Supported decision-making may be a useful alternative to the traditional guardianship framework, and several U.S. states have begun to offer this alternative (Kendrick, 2021).

Fourth, stakeholders also described an array of knowledge and attitude-related barriers that can inhibit access to HCBS for persons with dementia and their caregivers. Informational barriers and limited education opportunities around dementia may also be contributing to stigma, which can impact persons with dementia and their caregivers’ engagement in the community and obstruct pathways to obtaining supportive services. This aligns with existing evidence that stigma is a predominant deterrent to help-seeking behavior, contributing to delays in diagnosis and service initiation and utilization (Low & Anstey, 2007; Werner et al., 2014). More research is needed to evaluate effective approaches for reducing dementia-related stigma (Kim et al., 2019). Consumer beliefs that a dementia diagnosis necessitates an institutional transition also signals the need for education efforts around dementia and community-based LTSS. While stakeholders noted that efforts to improve understanding of dementia diagnoses would help to facilitate access to HCBS, education campaigns, and dementia literacy interventions should be evaluated to determine their effectiveness in reducing stigma, debunking misconceptions, and increasing consumer awareness. Results from a pilot intervention aimed at reducing dementia stigma found that empowering persons with dementia as educators were effective in reducing misconceptions and stereotypes and increasing positive perceptions associated with dementia (Phillipson et al., 2019). Some stakeholders described engagement with community leaders and professionals and believed this showed promise toward destigmatizing dementia and increasing community-wide dementia competence.

We asked stakeholders for their perceptions regarding racial or ethnic disparities in access to HCBS, and in turn, we clearly heard how cultural norms and values, linguistic accessibility, discrimination, and historical trauma can all influence whether diverse communities interface with HCBS. It is notable that most stakeholders, with some exceptions, did not typically name specific racial or ethnic groups that experienced disparities. Instead, they described more general underlying factors (e.g., historical trauma) or proxies (e.g., cultural or language barriers) for racial and ethnic population disparities. On one hand, this is promising because it suggests that stakeholders have a keen sense of mechanisms that likely underpin the well-documented disparities in dementia outcomes for some racial and ethnic minority groups. On the other hand, it may make it more difficult to identify and track group-level disparities in access, as well as outcomes, because of the focus on the “why” and not also the “whom.” For some stakeholders (e.g., Medicaid administrators), articulating specific racial and ethnic disparities can be challenging due to a lack of data (e.g., if states are not explicitly tracking these differences). The Centers for Medicare & Medicaid Services recently announced its 2022–2032 Framework for Health Equity; the associated prioritization of standardized demographic data (e.g., race, ethnicity, and language) signals a significant shift in this area and will likely help states, providers, and advocates better assess and monitor group-level disparities in access (Centers for Medicare & Medicaid Services, 2022).

Black and Hispanic Americans are up to 2 times more likely to develop dementia than White Americans (Alzheimer’s Association, 2022), and a literature review by Lines (2014) revealed consistent disparate adverse outcomes for these historically marginalized populations in terms of participation in clinical trials, LTSS utilization, quality of care, and mortality. While many studies have examined racial discrimination in patient experiences and racial disparities to health care access, few have evaluated interventions to address these disparities, and none have specifically studied how minoritized persons with dementia experience barriers to HCBS and associated health outcomes (Lines et al., 2014; Vila-Castelar et al., 2022). Further research is needed to understand how efforts to address racial and ethnic disparities in dementia care access and delivery (e.g., through cultural competency) can better meet the specific needs of culturally diverse populations and minoritized communities that are encountering barriers (Lines et al., 2014).

Limitations

Our qualitative approach is effective for extracting themes about HCBS access not accessible through quantitative methods alone but does have some limitations. First, although stakeholders’ perspectives provide rich detail and context, these perspectives are inherently subjective. We recruited participants from a diverse set of U.S. states, though stakeholders’ accounts may not be representative of all stakeholders’ perceptions or all state contexts. Along these lines, we used targeted but convenience sampling to recruit stakeholders; this limitation is particularly relevant for the HCBS provider and advocate stakeholder groups, as those who participated may have unique or distinct views that do not reflect the totality of their peers. Medicaid administrators’ perspectives are more likely to reflect the viewpoints of their state as an entity, given their position. In some interviews, participants were unable to speak to HCBS utilization by specific demographic groups (e.g., race and ethnicity).

Conclusion

Stakeholders identified barriers to HCBS access for persons with dementia that ranged from infrastructure, policy, and community-level barriers (e.g., clinicians, technology, transportation, and cultural differences), to interpersonal and individual-level barriers (e.g., formal and family caregivers, awareness, and attitudes). The impacts of these barriers both directly and indirectly affect health and quality-of-life outcomes for persons with dementia, including whether they receive a formal diagnosis, connect with medical and social support services, or whether they can remain in their home or community. Our findings highlight deficiencies in health system dementia competence, disparities in HCBS access among rural and minoritized populations, and lack of knowledge and misperceptions of dementia and Medicaid/HCBS waiver programs. Nationwide efforts are needed to increase early detection and diagnosis, destigmatize dementia and Medicaid programs, make HCBS access more equitable across geographic and culturally diverse communities, and to support caregivers of persons with dementia.

Funding

This work was supported by the National Institute on Minority Health and Health Disparities at the National Institutes of Health (grant number R01MD010360 to R. A. Shih) and its Administrative Supplement. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. D. Saliba is an employee of the Veterans Administration. The views presented here do not represent those of the Department of Veterans Affairs.

Conflict of Interest

None declared.

Data Availability

The qualitative data from this study are not publicly available due to human subjects protections and the need to prevent reidentification of participants from relatively small and specific populations. Examples of key discussion questions from our interview protocol are provided in a table within the manuscript.