Reimagining U.S. social care policy: a commentary on Medicaid strategies to better support individuals with dementia

An estimated 7.2 million Americans 65 and older live with dementia, a number expected to double over the next 50 years (Alzheimer's Association, 2025). More than 80% of people living with dementia (PLWD) live in the community, relying on support from family and friends and home and community-based services (HCBS) to delay or avoid institutional care (Harris-Kojetin et al., 2013;Lepore et al., 2017;Knapp et al., 2016;Olsen et al., 2016;Binette and Farago, 2021;Wehrmann et al., 2021). HCBS encompass a wide range of medical and social services, including food and nutrition programs, personal support services, adult day services, transportation, family caregiver support, and respite care, among other services (Casado and Lee, 2012;Tamara Konetzka et al., 2020;Wang et al., 2021;Mann et al., 2023).HCBS are particularly critical for PLWD, who differ in important ways from those of other HCBS consumers. PLWD experience a progressive decline in memory and other cognitive functions, which leads to impairment in higher-level skills and everyday tasks like basic self-care and the need for verbal or written cues and monitoring to complete daily activities (Raimo et al., 2024). Disease progression is also accompanied by complex medical and behavioral health needs (Cerejeira et al., 2012;Alpert and Fain, 2025). Consequently, PLWD rely to a greater extent on support to remain in the community and family caregivers compared to people with many other types of disabilities. Despite these needs, HCBS access and quality for PLWD vary considerably across the U.S., and identifying state-level policy solutions is essential for improving outcomes among PLWD.Medicaid, a joint federal and state program, is particularly salient to HCBS policy discussions, as it the joint federal and state program that serves as the primary payer for HCBS in the U.S., providing support to 4.5 million Americans (Mohamed et al., 2025). However, access to Medicaid HCBS is uneven, and PLWD experience unique barriers to receiving these services. Unlike institutional care, which is covered for eligible individuals by Medicare for short-term stays and covered by Medicaid for longer-term stays, nearly all HCBS are optional benefits under Medicaid (Burns et al., 2024;Mohamed et al., 2025). States are only required to cover a subset of HCBS categorized as home health services, which include part-time nursing services, home health aide services, and medical supplies, equipment, and appliances, and decisions around covering other HCBS through Medicaid are left to the discretion of states (Mohamed et al., 2025). The discretionary nature of most Medicaid HCBS alongside a host of factors, namely the complex structure of most state Medicaid HCBS programs, state-by-state variation in Medicaid policies, and states' eligibility HCBS determination processes, hasve resulted in inconsistent and often inequitable access to HCBS for many PLWD (Rohde et al., 2024).However, Medicaid's discretionary and complex funding structure for HCBS, along with state-bystate variation in Medicaid policies, has resulted in inconsistent and often inequitable access to HCBS for many PLWD (Rohde et al., 2024). Additionally, state policy decisions, particularly around eligibility determination processes, create additional barriers for PLWD.Recent research highlights important barriers to HCBS for PLWD, suggesting that the HCBS system is not dementia-capable. As defined by the Administration for Community Living, a dementiacapable system acknowledges that PLWD need more and different services than people with physical disabilities and are more likely to rely on caregivers (Tilly, Wiener and Gould, 2014). . Among these barriers, difficulties A recent study found that PLWD experience significant access issues due to difficulties obtaining a diagnosis -which may negatively influence eligibility for comprehensive HCBS -as well as limited awareness of available services and fear of stigmatization , among other issues emerge as especially prominent (Waymouth et al., 2023). Other research suggests existing HCBS may not meet the needs and preferences of PLWDare not dementia-capable but studies lack a specific definition of the meaning of dementia-capable in HCBS. Shippee et al. (2025) report that, among existing HCBS consumers, a dementia diagnosis is associated with a higher likelihood of reporting unmet HCBS needs despite higher HCBS utilization among PLWD. Given that most PLWD prefer to remain in the community and often cannot afford to pay out of pocket for in-home or institutional care (Reckrey et al., 2020), examining challenges and identifying pathways to improve Medicaid-funded HCBS access is critical to promoting equitable, person-centered dementia care and preventing unnecessary institutionalization.This commentary aims to link critical gaps in Medicaid-funded HCBS access for PLWD in existing research and identify policy opportunities to address current access issues. We argue that the most pressing priorities are to leverage flexible waiver authorities, revise eligibility determination processes, and implement reforms that promote equity and transparency around eligibility determination decisions.Medicaid waivers: A promising tool for improving access to HCBS for PLWD Currently, HCBS Medicaid waivers contribute to variability between states in HCBS access and quality, but they can also serve as a key strategy for improving HCBS for PLWD if states design their waivers with attention to the needs of PLWD. Unlike institutional care, which is covered for eligible individuals by Medicare for short-term stays and covered by Medicaid for longer-term stays, nearly all HCBS are optional benefits under Medicaid (Burns et al., 2024). Medicaid HCBS fall into two main categories: state plan benefits and waivers (Rohde et al., 2024). HCBS offered by state plans must be available to all eligible individuals within a state, and states are not generally allowed to limit services within specific geographic boundaries, set enrollment caps, or establish waiting lists (Rohde et al., 2024). In contrast, states can offer HCBS through waiver programs, which allow for limiting benefits to specific groups based on geography, income, or disability (Mohamed et al., 2025).States have two main pathways for offering Medicaid HCBS: state plan benefits and waivers (Rohde et al., 2024). HCBS offered by state plans must be available to all eligible individuals within a state, and states are not generally allowed to limit services within specific geographic boundaries, set enrollment caps, or establish waiting lists (Rohde et al., 2024). In contrast, states can offer HCBS through waivers, which allow for limiting benefits to certain groups based on geography, income, or disability (Mohamed et al., 2025). Given the substantial latitude they offer, mMost states choose to provideoffer HCBS through waivers, using them to establish specific , which gives states substantial latitude in designing programs but also introduces substantial variability in eligibility standards, scope of services, and delivery models for HCBStheir programs. Though this flexibility discretion comes with its aforementioned shortcomings, can create challenges by introducing variability in access and quality both within and across states, it also affords states opportunities to design waivers with attention to certain populations and target services to better meet consumers' needs and preferences (Haltermann et al., 2023;Miller et al., 2025). Waivers can also serve as a unique strategy for addressing social determinants of health and reaching consumers earlier in their disease progression, potentially improving health outcomes and alleviating financial strain on consumers and families, as well as states (Lipson, 2017;Medicaid and CHIP Access Commission, 2022). These features make Medicaid waivers a powerful policy tool states can leverage to meet the complex medical and social needs of PLWD, who comprise a large and growing share of their populations. across the country (Haltermann et al., 2023;Miller et al., 2025). For example, in 2019, Medicaid HCBS spending per client ranged from an average of $126.87 in Florida to $867.32 in New York, reflecting differences in cost of living, coverage decisions, and funding priorities (Murray et al., 2021;Parikh et al., 2025). Some states have expanded HCBS eligibility criteria and offerings in response to rising consumer complexity, while others restrict services due to budgetary or administrative constraints (Weaver and Roberto, 2019;Tamara Konetzka et al., 2020). The result is a patchwork system in which consumer experiences vary not only across states but also within them, shaped by local infrastructure, managed care penetration, and policy choices (Parikh et al., 2025). These dynamics are especially salient for PLWD, who often have complex medical and social needs and rely heavily on consistent, coordinated HCBS to remain in the community.While the use of Medicaid HCBS waivers has created a fragmented service system, waivers can serve as a powerful tool for redesigning HCBS systems to better address the needs of PLWD. As we outline below, states can use flexible waiver authorities and design enrollment processes to improve access to critical HCBS for PLWD.In their design of HCBS waivers, states can take proactive steps to increase access to and improve the quality of Medicaid HCBS to meet the needs of PLWD. These actions include expanding eligibility through flexible Medicaid authorities, revising aspects of the eligibility determination process, and ensuring equity and transparency around eligibility determinations.Waivers offer states opportunities to modify eligibility rules to increase access to HCBS for specific groups and broaden service offerings to target particular needs. Several states have used waiver flexibilities to pilot programs targeting HCBS to people before they meet nursing home-level of care criteria, which is an eligibility requirement for most waivers. Vermont, for example, provides HCBS to individuals aged 18 and older who are at risk of institutionalization but do not yet meet a nursing home level of care through its 1115(a) Global Commitment to Health Waiver, Vermont's Choices for Care (CHC). The program provides supports for individuals with "moderate needs," including adult day and homemaker services and flexible funding that can be used to employ a family member or friend as an "attendant" (Vermont Department of Disabilities, Aging, and Independent Living, 2016). Other 1115 demonstrations, such as New Jersey's Family Care Comprehensive Demonstration, include housing and social supports for high-risk populations, such as tenancy and transition supports or short-term services aimed at preventing or delaying institutionalization (Hinton and Diana, 2024). In addition to 1115 demonstrations, several states have adopted Community First Choice (1915(k)) or expanded state-plan HCBS to broaden access to attendant and support services that can stabilize people in the community (e.g., North Carolina Department of Health and Human Services, 2023). States were also recently granted the authority to apply for new 1915(c) HCBS waivers under Pub. L. No. 119-21, 139 Stat. 317 (2025), which allows states to provide Medicaid HCBS to individuals without requiring them to meet an institutional level of care, providing it does not increase any waiting time. Although it will not go into effect until 2028, this pathway could allow for earlier intervention in targeted populations, including PLWD to prevent institutionalization while balancing state budget constraints under traditional 1915(c) waiver authority. define specific needs-based criteria to target specific populations without the traditional 1915(c) institutional level of care requirement.These examples illustrate the flexibility waivers offer states in designing their eligibility criteria and service array. However, while these and similar waivers expand access to HCBS for many consumers, few states have used flexible waiver authorities to explicitly target populations with cognitive impairment outside of specific conditions such as traumatic brain injuries. In their eligibility criteria, states often prioritize typically require some level of functional over cognitive impairments, or do not consider cognitive impairments at all, potentially excluding PLWD from services (Alzheimer's Association, 2025)., typically often assessed by an individual's need for support with a certain number of activities of daily living (e.g., eating, dressing, bathing) and instrumental activities of daily living (e.g., managing money and medications). While using more moderate-level needs criteria can improve access for some individuals with dementia, states need to clearly prioritize cognitive, rather than physical, impairments in their eligibility rules to ensure PLWD with lower levels of physical disability can access services. States should also consider eligibility assessments that better evaluate needs among PLWD and tailor waiver services accordingly, can also use the flexibilities granted through these waivers to target services more specifically to the needs of PLWD, potentially increasing the quality and effectiveness of available HCBS for PLWD. An approach that could more fully account for PLWD's needs could involve including family caregivers' needs in the assessment process when a caregiver is available, as the care plans for PLWD are often dependent on family caregivers. This approach warrants further exploration and, if applied, states should thoughtfully consider what caregiver assessments to include and how they are used in the eligibility process, as current assessment practices vary widely by state and local agency, and this strategy will not be an option for PLWD without a care partner (Shugrue et al., 2019).The Medicaid waiver application process is a major barrier to HCBS for PLWD. In many states, eligibility includes being age 60 or older or having a documented disability. Individuals seeking coverage through the disability category must also receive a disability determination through the Social Security Administration (SSA) or a state agency (Colello and Morton, 2019). Applicants face additional barriers to obtaining disability status if they do not have a formal diagnosis, which is required for the disability evaluation process through the SSA (Waymouth et al., 2023;Social Security Administration, n.d.). Underdiagnosis of dementia is a widespread problem in the U.S., especially among minoritized racial and ethnic groups, and studies suggest that less than half of PLWD have been diagnosed by a clinician (Cox et al., 2025). Obtaining a formal dementia diagnosis is also particularly difficult for individuals with young-onset dementia, as it is often a lengthy process complicated by a number of factors, and individuals are frequently misdiagnosed, especially those with rarer subtypes of dementia (Lai et al., 2023;Giebel et al., 2024). As an alternative to requiring a formal diagnosis to meet eligibility criteria for HCBS, states can encourage but not require individuals to obtain a diagnosis for waiver eligibility. This modification could remove a significant barrier to HCBS access for PLWD.Another option states can leverage to reduce this barrier to accessing HCBS is to implement presumptive eligibility policies. Presumptive eligibility allows states to use basic financial information and screening tools to grant temporary eligibility while an individual waits for their full application to be processed (Reinhard et al., 2021). Several states have adopted presumptive eligibility policies for Medicaid HCBS, including Washington state under its 1115 Medicaid Transformation Project waiver. Washington's program established presumptive eligibility for individuals who need HCBS through Medicaid state plan and 1915(c) waiver authorities, and the process involves a brief screening by Area Agency on Aging staff to determine and grant presumptive eligibility, facilitating access to services while the individual awaits a final eligibility determination (Washington Health Care Authority, 2025).Beyond their requirements for individuals to receive a disability determination, sStates' eligibility criteriaassessmenteligibility determination processes for waivers, which often prioritize physical over cognitive impairments, Certain subgroups of PLWD may also experience persistent disparities in HCBS access, particularly those living in rural areas. Multiple factors are thought to contribute to these disparities, including PLWD in rural areas facing greater barriers to care due to stigma, cultural beliefs, and limited information about dementia (Waymouth et al., 2023). Direct care workforce shortages also disproportionately affect rural areas, and recent research has found that the ratio of direct care workers to older adults is substantially lower in rural compared to urban areas of the U.S. (Dill et al., 2023). These gaps in access are especially concerning in light of research that suggests people in rural areas have a higher risk of dementia and shorter survival times compared to their urban counterparts, and that rural areas are experiencing more rapid population aging, potentially further exacerbating existing disparities (Cohen & Greaney, 2023;Kramer et al., 2025).Recognizing the myriad barriers to HCBS access in rural areas, several states have implemented structured family caregiving services to increase support options amid workforce shortages. Through structured family caregiving, state Medicaid programs provide payment and support, including training and respite, to family caregivers who, in turn, provide personal care to the Medicaid beneficiaries, rather than receiving traditional services from a direct care 2022). specifically PLWD under its 1915(c) Family limiting eligibility to those with a dementia diagnosis Department of Social Services, 2023). Although requirement to obtain a formal diagnosis may access for some PLWD and structured family caregiving may not be a option for PLWD who have limited support more the service for addressing some gaps in care for PLWD in rural areas. In addition to structured family caregiving, many states are using Health Transformation to HCBS access in rural areas, including growing the rural direct care and care and several states have for Medicare and Medicaid Though the extent to which these are and implemented as will take to the promising opportunities for in the rural HCBS contribute to access to HCBS among PLWD. assessments used to determine a Medicaid level of care may not the full extent of needs among PLWD et al., n.d.). These assessments often prioritize physical impairments over cognitive impairments or do not consider cognitive impairments at all, potentially excluding PLWD from services (Alzheimer's Association, critical to equity is transparency around waiver policies and eligibility determination Additionally, and other available information about waiver programs are also often about how are for services, including those on waiting to a individuals who were on waiting lists for HCBS waivers an average of before receiving services (Burns et al., 2024). of awareness and about Medicaid waiver services among PLWD and their is a barrier to HCBS access et al., 2025). While are at the federal level to Medicaid eligibility and enrollment processes, states have an to make to increase the transparency of these processes to PLWD and their access the information they need to their available have an to evaluate their assessment and eligibility processes, as well as their policies and practices around waiting to ensure they consider and prioritize cognitive impairments dementia status and needs alongside physical, and disabilities. An approach that could more fully account for PLWD's needs could involve including family caregivers' needs in the assessment process when a caregiver is available, as the care plans for PLWD are often dependent on family caregivers. This approach warrants further exploration and, if applied, states should thoughtfully consider what caregiver assessments to include and how they are used in the eligibility process, as current assessment practices vary widely by state and local agency (Shugrue et al., addition to steps to ensure access to HCBS for PLWD through eligibility determination processes, states can also make to increase the transparency of these processes to PLWD and their access the information they need to their available these is a need for research that state policies to outcomes for PLWD, which has been by and inconsistent transparency and reporting from states opportunities for of the and benefits of HCBS policy States should to provide reporting such as to functional and consumer and quality Additionally, states should provide about policy particularly around eligibility determination decisions, including what screening are how their are who how are for services, and who final decisions about eligibility. Several federal including the Access to Medicaid and an may the for this research through their requirements around use of and reporting , This additional transparency allow for assessments of policy on access to and use of Medicaid HCBS among PLWD, both within and across states and HCBS delivery have benefits for For by barriers to HCBS states can potentially reduce on institutional care while also improving quality of and cost of living for Medicaid and their caregivers. The policy opportunities in this commentary can make this However, any to expand access to HCBS also comes with States have and are in a and, workforce and persistent to HCBS The HCBS workforce has not to meet the for and These are expected to over and and may additional on caregivers or PLWD living of waivers include their complexity, and which can limit is limited on the in expanding or HCBS access, including cost Additionally, which of services may most prevent or delay nursing home is difficult to priorities for person-centered care are also policy such as those through managed care that we not in this States with and programs can many of these around program eligibility and services for PLWD in addition to other tools to HCBS for improve the of many individuals who to age in the However, access to these services can be and the barriers are for PLWD. States have promising opportunities to the HCBS system of care for PLWD through the use of flexible waiver authorities and designing policies to better account for and address the needs of PLWD. waiver design can also improve the of other programs and such as the an which aims to address the and cost of services for PLWD. to waiver services with other care programs can further support in for states take steps to improve Medicaid HCBS, both and states can consider opportunities to support research on HCBS. like the Access may this which has been Comprehensive cost and outcomes research on HCBS has been limited by a lack of from the inconsistent of of and state-by-state policy research is critical to While across a of may be difficult to research is to the extent to which PLWD can access HCBS and the outcomes of HCBS This information will allow states to from other and programs to better meet Medicaid needs, improve access, and HCBS and