Strengthening the Dementia Care Workforce: A Public Health Priority

  • Date: Oct 24 2020
  • Policy Number: 202013

Key Words: Geriatric Health, Public Health Workforce

Developing a public health agenda for equipping the workforce with the capability and skills to deliver high-quality services and supports to the growing population with dementia and effectively contending with the complex and progressive impacts of dementia at all levels of society are concerns of growing public health importance. Action in several domains is called for, including public health and long-term care (LTC) systems, workforce development and expansion, public health and LTC financing, and quality improvement. This policy statement makes three interrelated recommendations. First, public health policies for hiring, training, and retention of the dementia care workforce must be strengthened to expand the supply of health and social care professionals, including direct care workers, with the necessary skill sets to effectively work with this population. Second, public LTC financing must be retooled to support the provision and expansion of community-based services for the population living with dementia, for whom coverage is currently optional and varies in funding by state. Third, quality improvement and assurance systems and metrics for dementia care and services must be matched to the priority needs of the population. In response to the growing need for a dementia-capable workforce, this policy statement calls for both a public health commitment to and investment in health and social care for people with dementia, including adoption of clear standards and action steps for hiring, training, and retaining an adequately sized and skilled workforce; improved public financing of community-based services; and rigorous public monitoring of quality to support improvement across the LTC continuum.

Relationship to Existing APHA Policy Statements
Various APHA policy statements address ways that public health issues may impact older people, including people with dementia and other populations, but these statements do not address the need for an adequate dementia care workforce as a public health priority at the population level. Three APHA policy statements address workforce development in relation to aspects of care or well-being among people living with dementia or cognitive impairment—such as end-of-life care, access to nature, and physical activity—but not broader workforce strengthening needs:

  • APHA Policy Statement 20134: Supporting Public Health’s Role in Addressing Unmet Needs in Serious Illness and at the End of Life
  • APHA Policy Statement 20137: Improving Health and Wellness through Access to Nature
  • APHA Policy Statement 201514: Building Environments and a Public Health Workforce to Support Physical Activity Among Older Adults

Six other APHA policy statements address either workforce issues or the specific population of older people living with dementia or cognitive impairment but not the combination of both workforce- and dementia-related issues:

  • APHA Policy Statement LB-14-01: Preventing Occupational and Community Transmission of Ebola and Globally Emerging Infectious Disease Threats
  • APHA Policy Statement 201111: Prioritizing Noncommunicable Disease Prevention and Treatment in Global Health
  • APHA Policy Statement 20136: Support for Paid Sick Leave and Family Leave Policies
  • APHA Policy Statement 201310: Solitary Confinement as a Public Health Issue
  • APHA Policy Statement 20161: Access to Integrated Medical and Oral Health Services
  • APHA Policy Statement 20189: Achieving Health Equity in the United States

Problem Statement
In the United States, public health and long-term care systems often do not effectively support people with dementia (PwD), and public health and LTC workforces commonly lack effective dementia training and resources. PwD, their caregivers, and society bear substantial health, social, and economic burdens related to these shortcomings in the public health and LTC systems. COVID-19 exacerbated the precarity experienced by PwD and illuminated gaps in dementia care resulting from economic, racial, and ethnic disparities in LTC financing, access, quality, and service delivery.[1]

Responding to the lack of dementia training and resources in public health, the Centers for Disease Control and Prevention (CDC) emphasizes that dementia is a “public health epidemic with a large and rapidly growing burden that has a significant impact on the nation.”[2] There appears to be momentum building to address this burden. For example, bipartisan support for 2018’s Building Our Largest Dementia Infrastructure for Alzheimer’s Act, which supports the development of a national public health infrastructure for risk reduction, early detection, caregiving, preventable hospitalizations, and surveillance, reflects the public health sector’s dedication to grappling with dementia care workforce issues at the population level.[3]

The U.S. dementia care workforce is inadequate in size and ability to meet population needs and growing demand. This “dementia care workforce” comprises relevant health professions and specifically LTC providers (i.e., health and social care professionals employed in LTC settings such as assisted living residences, board and care homes, and personal care homes), primary care physicians, geriatric specialists,[4] neurologists, nurses, social workers, care coordinators,[5] community health workers, and direct care workers (DCWs).[6] DCWs, including certified nursing assistants, play essential roles in delivering services for PwD, such as nutrition, exercise, and social engagement, that are often overlooked in purely biomedical approaches to dementia treatment.[7]

Challenges related to workforce shortages include a limited public health infrastructure to support population-level action, inadequate public and private investments in LTC, disparate access to community-based services and supports, and weak dementia care quality assurance systems.[1] Continued failure to strengthen the dementia care workforce will increasingly limit the ability of PwD to access quality services and supports, adding to health, social, and economic burdens for individuals, families, and society.

With the creation of the first National Plan to Address Alzheimer’s Disease in 2012, the U.S. Department of Health and Human Services (DHHS) and other federal agencies emphasized the need to enhance care quality and efficiency by building a skilled, dementia-capable workforce and by creating quality metrics for high-quality dementia care.[8] The World Health Organization also highlighted dementia as a public health priority and detailed dementia care workforce capacity building as an international priority.[9] The National Institute on Aging held National Research Summits on Care, Services, and Supports for Persons with Dementia and Their Caregivers in 2017 and 2020, and these summits prioritized dementia care workforce development, evaluation, and implementation, including training and competency standards.[10] In 2019, the National Academies of Sciences, Engineering, and Medicine Committee on Population convened a seminar, Gaps in the Dementia Care Workforce, that emphasized this public health problem.[11]

These efforts are encouraging, but gaps in the workforce need to be addressed on larger scales if PwD are to have equitable, ethical access to quality care. Growing a sustainable dementia care workforce necessitates investing in the public health and LTC infrastructures, transforming LTC financing to improve equitable access and alleviate burdens on families, and adopting quality assurance systems.

Extent of the problem, including health and economic burdens to society: Dementia — a neurocognitive disorder caused by Alzheimer’s disease and various other conditions — is a general term for loss of memory, language, problem-solving, and other thinking abilities severe enough to interfere with daily life and pose serious health and economic burdens to society.[4]

More than 5 million Americans 65 years or older are estimated to have dementia. That number is expected to grow to 13.9 million by 2060.[12] Alzheimer’s disease, the sixth-leading cause of death in the United States, accounts for approximately 60% to 80% of all cases of dementia.[4] The unique characteristics of dementia — including impaired communication, disorientation, confusion, impaired judgment, and wandering — present unique and complex challenges to the dementia care workforce.[13] Behavioral and psychological symptoms of dementia (BPSD) are common, experienced by about 90% of PwD, and are associated with health and economic burdens for PwD[14] and caregivers.[14–16] BPSD-related safety issues include falls, other preventable injuries, and nonadherence to care plans.[4,17] To address BPSD and mitigate physical and financial burdens, dementia care workers need training in effective interventions.[13,14,16]

Weight loss is also often present in the early stages of dementia and grows more common as dementia progresses.[18–21] Nutritional problems occurring in the course of dementia progression add to caregiver burden.[22] Research shows that married women with dementia may be at particular risk for weight loss because husbands “often have poor cooking skills and poor nutritional knowledge.” They therefore may be unable to adequately care for their wives’ nutritional needs or their own, thus placing both people’s nutrition in jeopardy.[22]

Dementia is costly for families and public health systems. The total cost of caring for PwD amounted to approximately $305 billion nationwide in 2020, with Medicare and Medicaid covering about $206 billion of this cost.[4] Even with health care coverage, families typically pay for a large share of dementia care themselves, amounting to about $66 billion in out-of-pocket expenses in 2020.[4] Total annual payments for PwD are expected to increase to more than $1.1 trillion in 2050, raising public and private costs.[4]

The projected growth in the population with dementia increases the need for a workforce capable of meeting the complex needs of PwD, including diagnosis, symptom (e.g., BPSD and nutrition) and comorbidity management, psychosocial support, and community-based services and supports, which often challenge the workforce’s skills and capacity.[9]

Dementia care is a major public health concern: The U.S. workforce is not well equipped to care for the growing PwD population. Five overarching public health concerns reveal that dementia care and services do not meet acceptable standards in terms of ethics, access, or quality.

First, despite the rising number of PwD who require assistance or services, public health funding for dementia care is limited. A dearth of public investment in dementia care has downstream ramifications, including gaps in workforce supply and capabilities, inequitable access to care, and weak quality assurance for dementia care. These deficits also place undue burdens on families, particularly women, who do most caretaking.

Second, suboptimal detection and diagnosis of dementia reduce the ability of PwD and their families to make informed decisions, access appropriate medical care, create financial and legal plans, and pursue services and supports.[4] This is particularly important considering that dementia is progressive. Despite the importance of early intervention and care planning for PwD, fewer than half of primary care providers include diagnostics for cognitive impairment in their standard of care protocol. Even if dementia is diagnosed, providers sometimes wait to disclose due to diagnostic uncertainty, time constraints, stigma, and fear of causing emotional distress.[4,23] There are many ethical issues related to dementia care and research, including diagnosis disclosure, genetic testing, and informed consent processes.[24]

Third, many PwD, the majority of whom live in broader communities rather than in LTC settings, experience unmet care and service needs even if they have caregivers.[25] In a study of 254 PwD who lived at home and had informal caregivers, 99% had one or more unmet needs; 42% had eight or more unmet needs.[25] Because PwD with informal caregivers can have multiple unmet needs, estimates that 14% to 30% of PwD in the community live alone suggest substantial unmet needs.[26–29]

Limited detection and diagnosis can also hinder uptake of interventions such as physical exercise strategies that can improve and maintain range of movement, strength, balance, mobility, and function and contribute to improved quality of life among PwD.[30] As dementia progresses, PwD often require more caregiving, including observation and daily assistance. Without intervention, many PwD experience high fall risks, unmanaged BPSD, loneliness, pain, sleep problems, and lapses in hygiene and nutrition.[4, 31] Another concern is that the higher frequency of malnutrition among older PwD can heighten complications, morbidity, and mortality.[32] Even after control for other medical conditions, PwD who live in the community have higher hospitalization rates and more emergency department use.[33,34]

The fourth public health concern is that PwD have disparate access to quality care in congregate settings. Nearly a fifth of PwD live in nursing homes or residential LTC settings,[35,36] amounting to about 40% of all LTC residents; however, segregation of PwD from other LTC residents is common, such as in settings that admit only PwD.[35,37,38] Despite these dementia-only LTC settings, few Medicaid beneficiaries with dementia have access because of limits on admissions[39] or policies forcing evictions.[40] Furthermore, while almost half of LTC settings participate in Medicaid, only about 15% of residents are Medicaid beneficiaries, and PwD are less likely to reside in facilities that participate in Medicaid.[37]

A barrier to PwD accessing LTC is financial burden.[36] The national median charge for a semi-private nursing home room in 2019 was over $90,000 per year.[41] The additional yearly per-person cost for PwD in nursing homes was nearly $14,000 in 2010 after adjustment for demographic characteristics and coexisting conditions.[42] Medicare recipients with dementia are four times more likely to have a skilled nursing facility stay, and their Medicare costs for skilled nursing facility care are three times higher.[43]

It is noteworthy than an estimated 262,899 PwD were treated by the Department of Veterans Affairs (VA) in 2014, including VA community living centers,[44] only some of which provide specialized dementia care.[45] Another often overlooked and growing population is aging prisoners,[46] who may be more likely to develop dementia in prison.[36]

The fifth concern is that health and LTC systems face shortages in the geriatric workforce, specifically with regard to a workforce trained to care for PwD. The Institute of Medicine in 2008 reported on an urgent need for health care workers with geriatric training.[47] This shortage ranges from nurse practitioners to primary care physicians.

In terms of primary care physicians, substantial shortages are forecast—between 21,100 and 55,200 by 2032[48]—and improved training on dementia is needed. The number of practicing geriatricians is about half of those needed.[4] With the population of older adults growing, an additional 26,980 geriatricians are needed by 2025,[49] and about 19% more neurologists are needed by that same year.[50] Twenty states have been identified as “dementia neurology deserts.”[51] These deserts are particularly wide in rural areas and sparsely populated states such as North Dakota, South Dakota, and Wyoming.[51] Taken together, this dearth of primary care and specialist physicians limits detection and diagnosis[6] and access to treatment and comprehensive care for PwD.

Training gaps are found in other health care professions. While there were 290,000 licensed nurse practitioners in the United States in 2020, fewer than 13% had expertise in geriatric care, and even fewer focused on dementia.[52] Less than 1% of registered nurses, physician assistants, and pharmacists identify themselves as geriatric specialists,[47] and geriatric social workers represent another critical shortage area[53]: despite predominantly working with adults 55 years and older, fewer than 5% of social workers have specialized geriatric training.[23]

Another critical shortage is among DCWs, individuals who assist with all aspects of physical, social, and emotional care for PwD. From 2016 to 2026, the demand for DCWs (e.g., certified nursing assistants, personal care aides) is projected to grow by more than 40%, while their availability is expected to decline.[54,55] These shortages limit home care and adult day care options for PwD, particularly in rural areas, and negatively affect staffing ratios required for quality care in LTC settings.

There are some unique challenges to bolstering the dementia care workforce, including recruitment, retention, career advancement, regulation, and training.[55] Dementia care is also underrepresented in clinical training, both in curricula and in opportunities for clinical experience.[56] Dementia and geriatric education is needed across myriad professions, but dementia-specific training requirements across the nation are sparse and inconsistent. An analysis of training requirements across licensure and professional settings, including LTC, showed that a minority of states require dementia training for various professionals such as LTC community administrators, registered nurses, licensed practical nurses, licensed vocational nurses, home health aides, social workers, and personal care assistants.[55,57]

Other significant obstacles to developing a strong dementia care workforce include low pay and limited public resources devoted to supporting workers.[58] Reimbursement rates and options from public and private insurers limit the health care system’s ability to provide quality diagnostic services and care for PwD. Although some progress has been made with the inclusion of cognitive impairment as a required domain for the Medicare Annual Wellness Visit and the addition of a Medicare reimbursement code for dementia care planning,[59] these benefits remain underutilized and do not address other gaps in dementia care such as respite care, community-based services to address safety risks, and monitoring for self-neglect.

Finally, while assuring a competent workforce to provide quality care is an essential public health service, the public health workforce[60,61] has had little or no formal preparation on dementia as a public health issue.[23] Knowledge of dementia and effective interventions is a prerequisite for developing a coordinated response—via partnerships with responsible health and social care sectors—to address the population-level impacts of inadequate care and services for PwD. Increasing knowledge and skills among public health workers will help correct quality and equity shortfalls in care for PwD.

Although these topics are often thought of as private, family concerns, the broader implications on our health care, economic, social, and cultural systems are all encompassing. Flaws there impact us all; rectifying them will help us all.

Disproportionate impact on underserved populations: Social determinants of health—including race, gender, ethnicity, income, education, and zip code—substantially impact dementia prevalence and access to services, and dementia care workforce limitations have disproportionate effects on underserved populations. In low-income and rural communities, dementia workforce gaps limit access to essential services, including diagnostics and primary care.[62] Minority populations are disproportionately impacted: dementia is more prevalent in women (12.2%) than in men (8.6%), and African Americans and Hispanics have a higher risk of dementia than Whites[12] and are more likely to have a missed diagnosis,[4] limiting access to treatment and services. Because the older adult population is growing more diverse, racial and ethnic differences in the prevalence of dementia are expected to increase.[12,63]

Unless workforce issues in dementia care are resolved, our national capability to provide equitable access and nondiscriminatory health services to these vulnerable and underserved populations will become even more constrained.[64] In 2020, the journal Public Health Nursing reported on the public health crisis of dementia and vulnerability among African Americans, emphasizing the value of population-specific education; according to one study, such education “can help ensure future public health programs and policies adequately allocate resources.”[65,66]

Ethics, equity, and economic and political issues: Because dementia is progressive with no cure and few treatments, there are considerable ethical considerations and duties to consider. According to the United Nations Convention on the Rights of Persons with Disabilities, society must ensure that all PwD, including those with inadequate resources of their own, can access quality care.[67,68] This policy statement focuses on strengthening the workforce, which includes not only health care professionals but also public health professionals who can increase regulatory oversight and prioritize allocation of public health resources to address unmet needs.

The diversity of PwD and caregivers—including people of varying diagnoses, races, ethnicities, gender identities, sexual orientations, ages, religions, socioeconomic statuses, learning styles, and language skills—and their diverse needs must be considered in strengthening the dementia care workforce. The workforce must be trained and equipped to provide person-centered care that is safe, culturally sensitive, and appropriate to specific populations with dementia. Furthermore, about one quarter of DCWs in the United States represent immigrant populations[69] in need of culturally competent training, respect and fair treatment on the job, and living wages. Addressing the ethics of the international flow of DCWs to the United States also is important: is our nation depleting care resources from other nations, and why must we outsource for care?

Strategies and Interventions to Address the Problem
Evidence bolstering the strategies’ effectiveness: Several strategies addressing workforce gaps support increased availability and quality of dementia care. Collectively, these strategies invest in the public health and LTC systems, expand the dementia care workforce, assure competencies needed for quality care, improve access to community-based services and supports, and advance quality improvement.

The public health workforce has little or no formal preparation on dementia as a public health issue.[23] To address the complex care needs of PwD, the public health workforce requires knowledge of the best evidence on dementia and sources of information, tools, and assistance. Public health agency directors, health officers, subagency-level directors, deputy directors, program directors, and other decision makers at the national, state, and local levels must advance public health workforce expertise in dementia with a focus on strengthening public health approaches to monitor, document, and address quality care gaps.

Clinical training on dementia must be integrated into medical, health, and social work professional education, and the shortage of clinician educators with specialized training must be addressed.[6] Schools can prioritize expanding health profession faculty specialized in dementia care with a focus on behavioral neurology, geriatrics or gerontology, palliative care, interprofessional team care, and community-based LTC.[6] Other entities, including universities, corporations, and foundations, can be engaged to bolster training programs.

The federal government invests in training medical students, such as with the Medicare graduate medical education (GME) program, providing hospital-based training to medical residents. By identifying dementia care as a priority shortage area, the GME program offers another route at the federal level to address specialist training (e.g., residency placements) in such care. Funded training programs must expand beyond hospital settings to include LTC and other settings.

The federal Geriatric Workforce Enhancement Program (GWEP), administered by the Health Resources and Services Administration (HRSA), seeks to strengthen the geriatrics workforce and can build on HRSA’s existing Alzheimer’s Disease and Related Dementias Training Curriculum to expand dementia training. An additional GWEP opportunity includes developing and verifying new ways to improve workforce capability to effectively reach underserved populations. Also, the CDC has provided initial education and training resources on dementia for schools of public health and professionals in public health and related disciplines. More intensive offerings will be necessary to prepare public health leaders for developing coordinated responses to address workforce gaps.

Federal government actions must continue to support the expansion of dementia expertise at educational institutions at various levels, including efforts to train the primary care workforce on dementia, grants to medical schools to grow enrollment for dementia specialists, grants to universities to create dementia-focused medical programs, and residency opportunities, low-interest loans, and other strategies to promote dementia specialist training.

Because professions serving PwD are not limited to specialists, dementia education should become an integral part of training for health professions. Certification organizations should ensure competency through certification exams, and states should ensure competency through licensure and facility regulations.[56] Although many states do not require training on cognitive impairment or dementia, some do. For example, Illinois and Wisconsin require cognitive impairment training and regulate the content to include essential topics—such as dementia-related behavior and communication strategies—as part of their curricula for certified nursing assistants.[57]

Nurses play important roles in assisting PwD and their families. For example, nurses can mobilize interdisciplinary teams to work with families over the course of the dementia trajectory, can be integral in planning end-of-life care, and can prepare family caregivers for dementia-related financial challenges and advance care planning. To do so effectively, however, nurses need ample training, resources, and systems-level support.[70]

Current recommendations suggest that the dementia care workforce can deliver high-quality care for PwD by applying concepts of person-centered care and agency, or self-direction, in its work.[71–74] This emphasis on person-centered care and agency is reflected in federal policy and offers an opportunity for integrating dementia-specific training. In implementing the Affordable Care Act, DHHS developed guidelines, in accordance with the Home and Community-Based Services (HCBS) Settings Rule released by the Centers for Medicare & Medicaid Services (CMS), containing standards for person-centered planning and self-direction in HCBS programs.[59,75] As states roll out their plans for implementing HCBS regulations, their approaches can include person-centered dementia care supporting sustained self-direction.[76]

In addition to expanding training across health professions, creating a supportive environment for the direct care workforce is essential in the face of DCW shortages and high turnover. Several measures can be taken to address these issues, including providing better pay for DCWs, supporting the establishment of training standards and programs, creating pathways for career growth, increasing pathways for legal status for immigrant DCWs, and developing a supportive work environment through communication and teamwork.[74] The U.S. Department of Labor will be critical to establishing relevant policies. Strengthening the “shadow workforce” of family and other informal caregivers can potentially reduce the excessive load on the public health system[77] but is outside the scope of this proposal, which focuses on public health and LTC workforces.

Efforts to support quality care for PwD must integrate a systematic means of measuring quality to ensure an improved standard of care.[78] In 2017, the National Academy of Medicine’s Vital Directions panel recommended use of standardized measures to improve the delivery of high-quality care and effective care management for vulnerable older adults and caregivers.[79] Public- and private-sector health plans have increasingly adopted value-based payment models that adjust provider compensation based on improvement as measured by quality indicators. Several efforts are under way to advance quality assurance in dementia care. The American Academy of Neurology and the American Psychiatric Association recommended a set of dementia care process measures for use by physicians and other health care professionals and systems to help improve performance.[80] CMS in 2012 launched an initiative, the National Partnership to Improve Dementia Care in Nursing Homes, whose official quality measure focuses on reducing antipsychotic medication use among long-stay nursing home residents.[81]

Despite these efforts, no quality assurance framework specific to dementia care has gained wide adoption in the United States, thus limiting capacity to support quality or to confidently differentiate good-quality from poor-quality care.[80] Although federal and state policies promotes HCBS over institutional (e.g., nursing home) care, few data are available on HCBS, especially for PwD and their caregivers.[82] Local and state data do not specifically measure how care is provided to PwD.[83]

Recommendations for a national plan to strengthen dementia care emphasize the need to evaluate care quality and effectiveness, such as by adding care planning into quality metrics and by testing quality indicators in value-based payment pilot programs.[84]

Efforts to support workforce development and quality care require sound, sustained economic support. Some efforts have focused on reimbursement for dementia care services. For instance, CMS in 2017 implemented a new reimbursement for cognitive assessment and care planning services.[85] This marked an important step toward enabling providers to spend time offering services that have been deemed essential for quality dementia care.

Alternative reimbursement models focused on care quality could sustain collaborative dementia care that integrates medical services with social and community supports, which reimbursement systems neglect.[55,86] One plan proposes insurance reimbursement for evidence-based dementia care that, in addition to medical services, includes community services such as education and counseling, care management and coordination, and individual care plans for PwD and their caregivers.[86] The model can reduce caregiver burden, improve care, cut costs, and delay nursing home placement.[86] Programs that test such payment models through federal, state, and private health plans inform strategies to restructure LTC systems to improve equitable access to community-based supports and services. Such efforts can expand the dementia care workforce while also enhancing care quality via strategic and sustainable financing.

The comparative effectiveness of the strategies described above is an important consideration for public health agencies. Funding is needed for comparative effectiveness research of these strategies to ensure that public health investments are made soundly and public health resources are used meaningfully.

Anticipated impacts: Evidence indicates that the proposed strategies would improve equitable access to care, lead to improved outcomes for PwD, and have the potential to bend the cost curve for dementia care, thus offering savings to a strained health care system and alleviating the health, economic, and social burdens on families.[4] Improved access to and coordination of services may reduce dependence on nursing home care and unnecessary hospitalizations while improving independence and quality of life for patients and caregivers.[87–89] With the shifting provision of dementia care from institutional settings to home- and community-based settings, an enhanced workforce equipped with dementia training at all levels and across specialties could impact the entire population living with dementia.[13,90] A systematic review of 20 studies assessing training interventions to reduce BPSD in LTC settings showed a positive impact on BPSD and improved interactions between staff and residents.[91] A well-equipped workforce can also support reduced costs. Several programs that integrated an interprofessional team skilled in dementia care helped reduce health care costs associated with hospitalizations, emergency department visits, and other outpatient visits, achieving a nearly six-to-one return on investment.[4]

Scaling such programs, made possible by an enhanced workforce, has extensive implications for lowering health care costs and improving quality. While these strategies can be implemented in ways that are ethical and equitable, public health evaluation of their implementation and effectiveness is needed to determine the size and equity of impacts.

Opposing Arguments/Evidence
One argument against workforce investment is that families and unpaid family caregivers should be the nation’s primary focus for dementia care. Proponents say this route would be more cost effective than investing in a professional workforce. However, the severe stages of dementia often require around-the-clock care—an arduous task for unpaid family members, especially considering that most PwD have chronic, progressive conditions [17] and informal caregivers often perform complex medical/nursing tasks that, in a health care facility, would be restricted to licensed professionals.[92]

Investing in informal caregiver support is essential and deserves immediate attention. However, many PwD have no caregiver support.[29] For PwD who do have unpaid support, their caregivers, typically women already facing societal discrimination, frequently experience negative impacts on their own physical and mental health and often find that caregiving negatively affects their ability to work, resulting in financial difficulties.[4] An ample and equipped workforce, trained and reimbursed to support PwD and family caregivers, is an investment that would benefit all.

Gaps in the availability of adequately trained health care and direct care professionals with geriatric and dementia-specific training indicate a market failure. While some fiscal conservatives view LTC as an individual responsibility, the Bipartisan Commission on Long-Term Care’s 2013 report demonstrated bipartisan recognition of the need for workforce-related investments in LTC.[93]

An opposing argument against training requirements is that they create a burden for certain students and professionals, limiting who can complete training and secure employment. Free or low-cost dementia care training is available from LTC providers, nonprofit organizations, universities, and geriatric workforce education centers, and training sponsored by state governments is available as well. Online training and education options enable access at any time of day or location (e.g., public libraries). While such options alleviate burden, it is necessary to verify that training is systematically evaluated and meets legal or regulatory standards.

Alternative Strategies
Nearly all states have adopted their own Alzheimer’s disease plans, which provide broad strategies for addressing dementia.[23] Plan components vary by state, but they typically include public health elements such as surveillance, workforce competencies, and public awareness and often include public health officials as authors.[94] Such state-by-state approaches support policy development in areas that states have jurisdiction over, including health care and LTC oversight and workforce development systems. For many states, these planning processes require government-to-government consultations with sovereign tribal nations regarding funding, policies, and standards to ensure that plans meet indigenous people’s needs.

The National Plan to Address Alzheimer’s Disease integrates state and local public health strategies from the Healthy Brain Initiative’s 2018–2023 Road Map.[8,23] The Road Map provides public health officials with 25 strategies, grounded in the Essential Public Health Services framework, to systematically address cognitive health and dementia. Among the recommended actions are developing state and local plans for supportive communities and workplaces, assessing the gap between workforce capacity and demand, and strengthening the competencies of care professionals.[95,96] The Road Map features promising state-by-state models that could be adopted by others and further tested, with the results published in the peer-reviewed literature.[23,95] One such model is the New York Alzheimer’s Disease Caregiver Support Initiative, the largest statewide investment in care workforces and community capacity.

The state plan movement should continue as one component of a multilayered approach to the workforce challenges related to dementia. The federal government, through Medicare and its share of Medicaid, is the predominant payer for dementia care services and has a responsibility to be part of the solution.

Action Steps
Based on the evidence, potential strategies, and considerations of alternative strategies, several complementary action steps are recommended to enhance the ability of the United States to support PwD and their caregivers, including via increased public health investments in the dementia care workforce, expansion of workforce training, enhanced quality assurance, and stronger, integrated reimbursement pathways.

  1. Fund dementia care workforce infrastructure: APHA recommends that the CDC increase funding to state, local, and tribal public health departments to expand public health policy development, data collection for surveillance and quality assurance, and programs that train and enhance the dementia care workforce. In addition, APHA suggests that state and local health departments make their own investments in building the dementia care workforce, for which New York State may be a model.
  2. Expand specialized health professions through targeted investments: APHA recommends that the federal government, via HRSA, expand strategic investments that support training, including the GWEP. Additional investments via HRSA and the GME program should specifically target dementia. Furthermore, HRSA, the Agency for Healthcare Research and Quality, the National Institutes of Health, medical schools, and other public and private research organizations should examine the effectiveness of dementia care workforce development strategies, including approaches for workforce recruitment, training, and retention.
  3. Require dementia training as part of professional licensure requirements: APHA recommends that state credentialing bodies, including departments of education, departments of health, departments of commerce, and other licensing bodies, and professional associations involved in credentialing exams integrate dementia competencies into their professional licensure requirements.
  4. Develop paths for DCWs and home care workers that support career growth, retention, supportive work environments, training opportunities, and higher pay: APHA recommends that the U.S. Department of Labor and other federal and state departments investigate workforce issues and administer policies that protect, grow, and retain the direct care workforce to address current and projected shortages. Also, APHA suggests that private and public employers train, support, and offer employees health benefits and a livable wage. Increasing the federal minimum wage would increase wages for a large proportion of DCWs.[97,98]
  5. Create new and expand existing reimbursement models that integrate social and community-based services and medical care: APHA recommends that public payers of medical care and social services, including the Administration on Aging/Administration for Community Living (AoA/ACL), Medicaid and Medicare, and private payers, develop reimbursement models for evidence-based dementia care, community-based services, and public health approaches that benefit PwD and caregivers, especially value-based systems that improve access and quality while saving dollars.
  6. Establish a dementia-specific quality assurance framework for key components of the health and social care systems and integrate quality measures in service delivery systems: With the shift to value-based care, insurance programs have integrated many quality measures in payment models to incentivize quality over volume. While other common chronic conditions are represented in the measures, few or no dementia quality metrics are included. APHA recommends that both private and public payers, including Medicare and Medicaid, strengthen quality assurance and oversight of dementia care services and incorporate dementia-specific measures in their oversight systems.
  7. Prioritize health equity and cultural competence in dementia workforce development: Dementia and the underinvestment in the dementia care workforce disproportionately impact people of color. APHA recommends that the Elder Justice Coordinating Council, directed by the Office of the Secretary of Health and Human Services and implemented by AoA/ACL, promote federal prioritization of health equity and cultural competence in dementia workforce development. In addition, APHA recommends that federal and state policymakers and service providers attend to health equity and diversity in all efforts to strengthen the dementia care workforce, such as by incorporating person-centered approaches and cultural competency into hiring and training initiatives and quality assurance systems, including efforts to support those who have been disproportionately affected by COVID-19 and preexisting inequities.
  8. Strengthen the federal infrastructure supporting the home care workforce: APHA recommends that Medicare evaluate the federal standards for home care agencies to assess opportunities for home care workforce and infrastructure strengthening, such as encouraging increases in employee wages, ongoing training opportunities to enrich employees’ skills in caring for people living with dementia, and practices to identify and remediate hazards that cause employee injuries and illnesses.
  9. Develop, implement, and update comprehensive state-level plans on dementia: APHA recommends that state policymakers support the development of state-based strategies with substantive involvement from state agencies, including public health, Medicaid, aging and disability, labor, and human services, as well as nonprofits, consumer groups, and the dementia care workforce. Sovereign tribal nations and tribal health systems should be consulted in the development of these strategies. These comprehensive plans should assess dementia care workforce challenges and formulate a coordinated response by public- and private-sector stakeholders to address top priorities.
  10. Engage the dementia care workforce and other primary stakeholders, including people living with dementia and informal caregivers, in prioritizing and planning workforce development research, policies, and strategies: APHA recommends that federal, state, and local policymakers; private providers of dementia care services; educational institutions; and professional organizations engage diverse members of the dementia care workforce and other primary stakeholders in dementia care workforce development efforts.

By adopting these action steps, states and the nation as a whole can meet their ideals and expectations of providing equitable, ethical, effective, and robust care to people living with dementia, their families, and the community at large, all while reducing personal strain and public health costs.

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