Up to half of all individuals who receive long-term services and supports (LTSS) are living with Alzheimer’s disease or another form of dementia. Direct care workers provide most of the care across LTSS and are the foundation of a dementia-capable workforce—yet they are underprepared, under-recognized, and undervalued for their role. This article outlines four strategies for bolstering direct care workers’ contribution to dementia care, namely: strengthen and stabilize the workforce; integrate dementia-specific competencies in direct care training requirements and programs; design, pilot-test, and replicate dementia specialist roles; and strengthen research on dementia care policy and practice.
Alzheimer’s disease, dementia, long-term care, direct care workforce, person-centered care
“There's a lot of limitations to caring for somebody with dementia and I could use more help… . [C]ommunication classes, workshops on how to care for someone who doesn’t understand what you are saying to them, how to prevent the client from getting upset, how to help them take care of themselves in the ways they still have left in them. Who would be here to care for them if it weren’t for me?”
—Quote from a direct care worker research participant
There are more than 7.2 million people living with dementia in the United States (Super, Ahuja, & Proff, 2019). Dementia primarily affects older adults—approximately one in nine older adults has been diagnosed with Alzheimer’s disease, the most common form of dementia (Alzheimer’s Association, 2022a). As their cognition declines, people living with dementia require increasing levels of assistance with day-to-day activities like attending appointments and managing household chores (i.e., instrumental activities of daily living, or IADLs) and with personal care tasks such as bathing, eating, and toilet care (i.e., activities of daily living, or ADLs).
The majority of people with dementia live in the community and receive support from family members, friends, and neighbors (Chi et al., 2019)—but over time, many turn to paid long-term services and supports (LTSS). As a result, dementia predominates across LTSS settings, affecting half of all nursing home residents, 40% of individuals in assisted living and other residential care settings, and nearly a third of those receiving home-based care (Harris-Kojetin et al., 2019). Across these settings, direct care workers (DCWs) are central to the delivery of care—yet tend to be underprepared, under-recognized, and undervalued for their critical role.
Envisioning a Dementia-Capable Direct Care Workforce
A dementia-capable workforce is one that addresses the complex and diverse needs of people with dementia and their caregivers (Ty & McDermott, 2021). The need for dementia capability encompasses nearly every occupation, from physicians and nurses to first responders, retail and food service staff, and many more. But given the prevalence of dementia across LTSS—and because the direct care workforce is larger than any other single occupation in the United States (PHI, 2022)—direct care workers are the foundation of a dementia-capable workforce.
DCWs—which include personal care aides, home health aides, and nursing assistants—are well-positioned to promote person-centered dementia care, meaning care that is “based on knowing the person within the context of an interpersonal relationship” and provided “in a way that supports individualized choice and dignity” (Fazio et al., 2018). Their contribution to person-centered dementia care begins with the provision of assistance with ADLs and IADLs—but it does not end there.
For example, through their ongoing relationships with those living with dementia and their families, DCWs hold unique knowledge about each person’s history, needs, preferences, values, environment, and well-being. If recognized and leveraged, that knowledge can help inform person-centered care plans that maximize health, function, and quality of life.
DCWs also can play a greater role in implementing non-pharmacological interventions—aromatherapy, massage, music therapy, and others.
DCWs also can help prevent and mitigate “behavioral and psychological symptoms of dementia” (BPSDs), also known as “responsive and reactive behaviors,” which affect nearly everyone living with dementia (Cerejeira et al., 2012; Alzheimer’s Society of Canada, 2022). As well as signifying and causing distress for people living with dementia, these symptoms and behaviors—e.g., agitation, anxiety, and aggression, among others—also are associated with numerous negative outcomes for family caregivers and DCWs (Lyons & Champion, 2022).
DCWs can help to identify and address the antecedents of such distress, such as environmental triggers, health status changes, or unmet needs. But with appropriate training, time, and supervision, DCWs also can play a greater role in implementing non-pharmacological interventions, such as aromatherapy, massage, music therapy, and others (Scales, Zimmerman, & Miller, 2018).
Through these contributions, DCWs can support people in living well with dementia. They also can help reduce emergency department visits and hospitalizations, which are disproportionately high among individuals with dementia (Shepherd et al., 2019), delay nursing home admissions (Toot et al., 2017), reduce the costs of care (Hudomiet, Hurd, & Rohwedder, 2019), and help lessen stress and strain among family caregivers (Reckrey et al., 2021).
Reality Check—Limits on the Direct Care Workforce
In many cases, DCWs already are applying these dementia care skills on a daily basis. However, achieving consistent dementia capability across the full direct care workforce is impeded by a range of structural and systemic barriers.
Currently numbering 4.7 million workers, the direct care workforce is projected to add more than 1.2 million new jobs within the next decade (2020–2030) due to increasing demand for LTSS (PHI, 2022). A further 6.6 million jobs will need to be filled as workers leave the field or exit the labor force altogether. Turnover in this workforce is high and job vacancies are rife, never more so than during the ongoing COVID-19 pandemic (Scales, 2022a). Such workforce instability can seriously hinder person-centered care, which relies upon strong and sustained relationships between those providing and receiving care (Lee, Lee, & Kim, 2022).
Workforce recruitment and retention challenges are driven by persistently poor job quality for DCWs, who are predominantly women, people of color, and immigrants (PHI, 2022). The median hourly wage for direct care was just $14.27 in 2021—nearly a dollar higher than before the pandemic, but still far less than a livable, competitive wage. Because of low wages, many DCWs live in or near poverty and rely upon public assistance to make ends meet.
DCWs receive limited entry-level and ongoing training, another indicator of poor job quality that also undermines dementia capability. Two direct care occupations—certified nursing assistants in nursing homes and home health aides employed by Medicare-certified home health agencies—are required by federal regulations to complete at least 75 hours of entry-level training and 12 hours of annual continuing education. Dementia care is among the requisite training topics for nursing assistants, but not for home health aides.
In contrast, there are no federal training requirements for DCWs providing other home- and community-based services (HCBS), so standards vary widely by state and setting. Looking specifically at dementia care training, a 2015 review found that 44 states and the District of Columbia have set dementia care training standards for assisted living staff, but the regulations only pertain to special dementia care facilities or units in 14 of those states (Burke & Orlowski, 2015). The same review found that only 13 states have established any dementia care training requirements for non-medical home care. In general, where dementia-specific training requirements exist, they tend to be outdated, cover only a subset of DCWs, lack competency standards, and have inadequate enforcement mechanisms (Alzheimer’s Association, 2022b).
Other limits on the direct care workforce include few career advancement opportunities, limited inclusion in the interdisciplinary care team, and inadequate supervision and support (Scales, 2022a).
The Way Forward—Recommendations for Policy and Practice
Below, we propose four strategies for securing the foundational role of DCWs in the dementia care workforce. These strategies align with many existing recommendations, including the Alzheimer’s Association’s Dementia Care Practice Recommendations (see Gilster, Boltz, & Dalessandro, 2018 for workforce-specific recommendations) and those issued by the Workforce Development Workgroups from the 2017 and 2020 national dementia care research summits (Weiss et al., 2020; Weiss et al., 2021).
Strengthen and Stabilize the Direct Care Workforce
The broadest strategy is to bolster the direct care workforce to support all those who require LTSS. This policy and practice effort must be underpinned by a commitment to improving job quality and making direct care a viable, rewarding, and respected career choice.
Job quality improvements must be implemented, in part, through public financing and regulations. Because Medicaid is the largest payer for LTSS (Congressional Research Service [CSR], 2022), a key strategy is to raise Medicaid reimbursement rates with provisions to ensure that the additional funds reach workers. Policymakers also can set wage parity requirements—to achieve equitable compensation across LTSS settings and programs—or establish wage tiers linked to training, experience, and responsibilities.
‘Only 13 states have established any dementia care training requirements for non-medical home care.’
As one example, Colorado recently established a $15 minimum wage for DCWs who are paid through Medicaid-funded HCBS programs—nearly $2.50 more than the statewide minimum wage (Scales, 2022b). Although the wage increase is financed initially by the federal American Rescue Plan Act (ARPA), it will be sustained by the state going forward.
In practice, LTSS employers also can implement a variety of approaches to improve job quality and thereby boost recruitment and retention. Beyond raising wages, examples include: introducing new training programs to meet workers’ needs, offering additional employment benefits, establishing peer mentoring programs, improving interdisciplinary communication channels, creating new opportunities for employee recognition, developing internal career pathways, and more (Campbell et al., 2021).
Integrate Dementia Care Competencies Into All Direct Care Training
A second strategy is to enhance the dementia care competency of the direct care workforce, which can improve care quality for people living with dementia while also improving job satisfaction and reducing stress among DCWs (Gilster, Boltz, & Dalessandro, 2018).
Several states already have taken action to improve dementia care training for DCWs and other LTSS staff, in line with the Alzheimer’s Association’s recommendations (2022b). For example, the Dementia Training for Direct Care Workers Support Amendment Act of 2020 requires that DCWs across LTSS settings in the District of Columbia receive at least eight hours of dementia-specific entry-level training and four hours of continuing education. The Act also specifies training content and trainer requirements. Other states now are introducing or enhancing dementia care training using ARPA funds, including California, Connecticut, Rhode Island, and Wisconsin.
As well as dementia-specific training, DCWs would benefit from training that prepares them to care for an increasingly diverse population of older adults. Cultural and linguistic competency is particularly important in the context of dementia care, because dementia not only disproportionately impacts older adults of color (Alzheimer’s Association, 2022a) but also because such competency can help DCWs more effectively understand and meet the needs and preferences of people living with dementia.
Within and beyond the regulatory context, LTSS employers can take proactive steps to identify their workers’ knowledge gaps and source quality training programs to bridge those gaps. Many training programs are available online or in hybrid formats, which can facilitate uptake, provided that DCWs have access to and support with online learning.
Design, Test, and Replicate Dementia Specialist Roles in Direct Care
In addition to upskilling the full direct care workforce, there is also a critical need to create dementia specialist roles—further augmenting dementia competency in this workforce while also promoting new career opportunities for DCWs (Pittman et al., 2021).
Dementia care specialists can: provide enhanced direct care to people living with dementia; educate other DCWs and family caregivers about dementia care; help other caregivers identify and address antecedents of distress; provide continuity during care transitions; and serve a recognized role on the interdisciplinary care team.
There is a critical need to create dementia specialist roles—further augmenting dementia competency in this workforce.
States can take leadership in creating specialist roles for DCWs. For example, Massachusetts has a well-established Alzheimer’s Supportive Home Care Aide role, which is associated with additional hours of training, ongoing supervision and support, and higher wages (Gleason, 2018). One option is to adapt existing specialist roles to the direct care workforce—such as the dementia care specialist role for licensed professionals that was successfully introduced in California (Flatt, Hollister, & Chapman, 2019).
Learning from these examples, LTSS employers can trial dementia care specialist roles within their organizations, along with other advanced direct care roles that can maximize the contribution of DCWs, while boosting recruitment and retention (Campbell et al., 2021). More broadly, employers must commit to integrating DCWs into interdisciplinary care teams so that their perspectives are heard, respected, and incorporated in the overall delivery of person-centered care (Stone & Bryant, 2019).
Strengthen Research on Dementia Care Policy and Practice
Finally, robust research is needed to inform the creation of a dementia-capable direct care workforce, particularly intervention research focused on maximizing the unique role and contribution of DCWs in the delivery of care. Such interventions could focus on DCWs’ role in supporting person-centered care planning and assessment; implementing non-pharmacological interventions; identifying social determinants of health and other factors that impact well-being; supporting other DCWs and family caregivers; serving in specialist roles on the interdisciplinary care team; and more.
More broadly, the evidence base on direct care workforce recruitment and retention requires strengthening, particularly with regard to how investments in compensation, training, work environments, and career development impact workforce stability as well as care outcomes and costs. Also, it is critically important to continue developing and implementing person-centered outcome measures across LTSS settings, in order to evaluate the impact of workforce-related investments on the outcomes that matter most to people living with dementia (Wagner et al., 2021).
Given their unique role in providing sustained, daily care, DCWs are well-positioned to support better quality of care and quality of life for the growing population of people living with dementia across LTSS settings. But policy changes, practice development, and further research is needed to strengthen recruitment and retention overall, upskill this workforce in dementia care, and create specialized roles on the care team. Only then will we fully realize DCWs’ role as the foundation of a dementia-capable workforce.
Kezia Scales, PhD, is vice president of Research & Evaluation at PHI in the Bronx, New York. She may be contacted at firstname.lastname@example.org. Laura M. Wagner, PhD, RN, GNP, FAAN, is a professor of Community Health Systems at the School of Nursing, University of California–San Francisco, in San Francisco. She may be contacted at Laura.Wagner@ucsf.edu.
Photo credit: Halfpoint/Shutterstock
Alzheimer’s Association. (2022a). 2022 Alzheimer's disease facts and figures. www.alz.org/alzheimers-dementia/facts-figures
Alzheimer’s Association. (2022b). Dementia training for direct care workers. https://alzimpact.org/media/serve/id/5d23ae7160dd4
Alzheimer’s Society of Canada. (2022). Responsive and reactive behaviours. https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/understanding-symptoms/responsive-reactive-behaviours
Burke, G. & Orlowski, G. (2015). Training to serve people with dementia: Is our health care system ready? Paper 2: A review of dementia training standards across health care settings. Justice in Aging. https://bit.ly/3JS1I3T
Campbell, S., Drake, A.D.R., Espinoza, R. & Scales, K. (2021). Caring for the future: The power and potential of America’s direct care workforce. PHI. http://phinational.org/caringforthefuture/
Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 73. doi:10.3389/fneur.2012.00073
Chi, W., Graf, E., Hughes, L., Hastie, J., Khatutsky, G., Shuman, S., Jessup, E.A., Karon, S., Lamont, H. (2019). Community-dwelling older adults with dementia and their caregivers: Key indicators from the National Health and Aging Trends Study. The Office of the Assistant Secretary for Planning and Evaluation. https://aspe.hhs.gov/system/files/pdf/260371/DemChartbook.pdf.
Congressional Research Service (CSR). (2022). Who pays for long-term services and supports? https://bit.ly/3LsmND8
Fazio, S., Pace, D., Flinner, J., & Kallmyer, B. (2018). The fundamentals of person-centered care for individuals with dementia. The Gerontologist, 58(suppl_1), S10–9. doi: 10.1093/geront/gnx122
Flatt, J. D., Hollister, B., & Chapman, S. A. (2018). Dementia care specialist workforce in California: Role, practice, training, and demand. UCSF Health Workforce Research Center on Long-Term Care. https://healthworkforce.ucsf.edu/sites/healthworkforce.ucsf.edu/files/REPORT_DCS_Report_FINAL2.1.18.pdf
Gilster, S. D., Boltz, M., & Dalessandro, J. L. (2018). Long-term care workforce issues: Practice principles for quality dementia care. The Gerontologist, 58(suppl_1), S103–13. doi: 10.1093/geront/gnx174
Gleason, H. (2018). Setting the agenda: Data driven advocacy to address home care aide policy. Home Care Aide Council. https://commcorp.org/wp-content/uploads/2018/02/ Resource_HCAF_Setting-the-agenda-data-driven-advocacy-to-address-home-care-aide-policy_Feb-2018.pdf
Harris-Kojetin, L., Sengupta, M., Lendon, J. P., Rome, V., Valverde, R., & Caffrey, C. (2019). Long-term care providers and services users in the United States, 2015–2016. National Center for Health Statistics. Vital Health Stat 3(43).
Hudomiet, P., Hurd, M. D., & Rohwedder, S. (2019). The relationship between lifetime out-of-pocket medical expenditures, dementia, and socioeconomic status in the U.S. The Journal of the Economics of Ageing, 14, 100181. doi:10.1016/j.jeoa.2018.11.006
Lee, K. H., Lee J. Y., & Kim, B. (2022). Person-centered care in persons living with dementia: A systematic review and meta-analysis. Gerontologist, 62(4):e253–64. doi: 10.1093/geront/gnaa207
Lyons, T. L., & Champion, J. D. (2022). Nonpharmacological interventions for management of behavioral and psychological symptoms of dementia in long-term care facilities by direct caregivers: a systematic review. Journal of Gerontological Nursing, 48(7), 18–23. doi: 10.3928/00989134-20220606-03
PHI. (2022). Direct care workers in the United States: Key facts. Retrieved from www.phinational.org/resource/direct-care-workers-in-the-united-states-key-facts-2/
Pittman, P., Ziemann, M., Bodas, M., Chapman, S. (2021). Advancing the Home Care Workforce: A Review of Program Approaches, Evidence and the Challenges of Widespread Adoption. Fitzhugh Mullan Institute for Health Workforce Equity. www.gwhwi.org/homecareworkforce
Reckrey, J. M., Boerner, K., Franzosa, E., Bollens-Lund, E. & Ornstein, K. A. 2021. Paid caregivers in the community-based dementia care team: Do family caregivers benefit?. Clinical Therapeutics, 43(6), 930–41.
Scales, K. (2022a). Transforming direct care jobs, reimagining long-term services and supports. Journal of the American Medical Directors Association, 23(2), 207–213. doi: 10.1016/j.jamda.2021.12.005
Scales, K. (2022b). State Policy Strategies for Strengthening the Direct Care Workforce. PHI. www.phinational.org/resource/state-policy-strategies-for-strengthening-the-direct-care-workforce/
Scales, K., Zimmerman, S., & Miller, S. J. (2018). Evidence-based nonpharmacological practices to address behavioral and psychological symptoms of dementia. The Gerontologist, 58(suppl_1), S88-S102. doi: 10.1093/geront/gnx167
Shepherd, H., Livingston, G., Chan, J., & Sommerlad, A. (2019). Hospitalisation rates and predictors in people with dementia: a systematic review and meta-analysis. BMC Medicine, 17(1), 1–13. doi:10.1186/s12916-019-1369-7
Stone, R. I., & Bryant, N. S. (2019). The future of the home care workforce: training and supporting aides as members of home‐based care teams. Journal of the American Geriatrics Society, 67(S2), S444–8. doi: 10.1111/jgs.15846
Super, N., Ahuja, R., & Proff, K. (2019). Reducing the cost and risk of dementia. Milken Institute. https://milkeninstitute.org/reports/ reducing-cost-and-risk-dementia
Toot, S., Swinson, T., Devine, M., Challis, D., & Orrell, M. (2017). Causes of nursing home placement for older people with dementia: A systematic review and meta-analysis. International Psychogeriatrics, 29(2), 195–208. doi:10.1017/S1041610216001654
Ty, D. & McDermott, M. (2021). Building workforce capacity to improve detection and diagnosis of dementia. Milken Institute and Alliance to Improve Dementia Care. https://bit.ly/3Jj3QQs
Wagner, L. M., Van Haitsma, K., Kolanowski, A., & Spetz, J. (2021). Recommendations to deliver person-centered long-term care for persons living with dementia. Journal of the American Medical Directors Association 22(7), 1366–70. doi: 10.1016/j.jamda.2021.05.003
Weiss, J., Tumosa, N., Espinoza, R., Bragg, E., Morgan, J. C., Flatt, J., ... & Whiting, G. (2021). Research recommendations to address dementia workforce development needs. OBM Geriatrics 5(1), 1–1. doi: 10.21926/obm.geriatr.2101162
Weiss, J., Tumosa, N., Perweiler, E., Forciea, M. A., Miles, T., Blackwell, E., Tebb, S., Bailey, D., Trudeau, S. A., & Worstell, M. (2020). Critical workforce gaps in dementia education and training. Journal of the American Geriatrics Society 68(3):625–9. doi: 10.1111/jgs.16341