A detailed examination of issues related to the paid workforce that supports people living with dementia and their families was beyond the scope of this report, but these individuals are critical to the future of dementia care (see Chapter 1). The health care system and the entities that provide direct care to people living with dementia (both in their homes and in residential facilities) employ millions of people, who range from highly trained medical specialists and other clinicians to the individuals who provide assistance with bathing and toileting. Some work exclusively with people living with dementia, but the majority work with other geriatric or disabled patients and clients, and serve the general public as well. Today, the United States is facing moderate to severe shortages of most categories of workers needed to care for people living with dementia, and these shortages are growing.
Over the past two decades, the National Academies of Sciences, Engineering, and Medicine (and, previously, the Institute of Medicine [IOM]) have conducted a series of studies addressing workforce issues, but none have focused specifically on dementia care, and none have directly addressed the direct care force. This appendix draws on several of these reports to highlight recent developments related to dementia care, and provides the research recommendations offered by the 2017 National Research Summit on Dementia Care.
THE PROFESSIONAL WORKFORCE
A 2008 IOM report proposes a three-pronged approach to preparing a workforce to support an aging U.S. population: increasing the recruitment
and retention of geriatric specialists and caregivers, enhancing the competence of all individuals in the delivery of health care, and redesigning models of care and broadening provider and patient roles to achieve greater flexibility (IOM, 2008).
The needed dementia experts identified in the first of these prongs include physicians trained and board-certified in neurology, psychiatry, or geriatric medicine who devote a substantial proportion of patient contact time to the evaluation and care of adults with acquired cognitive impairment or dementia (Johnson et al., 2013). At present, there are few of these experts, and their numbers do not even meet current demand. For example, the number of geriatricians in the United States has declined from more than 7,100 in 2008, when the IOM released the above report, to approximately 6,800 currently, including fewer than 1,600 geriatric psychiatrists (American Geriatrics Society; American Board of Medical Specialists, 2020). This shortfall of dementia experts is expected to grow.
Predicted shortages of generalist health care providers needed for the second prong of the IOM approach (enhancing the competence of all individuals in the delivery of health care) are also likely to affect people living with dementia. The Association of American Medical Colleges (2020) predicts that the nation will have between 21,000 and 22,000 fewer primary care physicians than it needs by 2032. Shortages of nurses are already a serious problem across health care settings (National Academies of Sciences, Engineering, and Medicine [NASEM] 2021a). Since 2012, 60,000 registered nurses have left the health care workforce each year (Buerhaus et al., 2017). Nevertheless, the number of nurse practitioners is growing, and there is substantial evidence supporting the effectiveness of their care of persons living with dementia (Auerbach, Buerhaus, and Staiger, 2020; Poghosyan et al., 2021). Moreover, a recent National Academies study of dementia care identified collaborative care, including nurse practitioners, as one of the few evidence-based interventions for dementia care (NASEM, 2021b).
Rural communities are often particularly hard hit by shortages of professional, licensed care providers, leaving older adults with limited access to vital services (IOM, 2008). In 2010, for example, 90 percent of the geriatric workforce was serving urban areas (Lester et al., 2020; Hintenach et al., 2019). Compounding these shortages is the fact that older adults living in rural areas are at higher risk for developing dementia (Weise et al., 2014).
Substantial efforts have been made to increase the expertise of all health care providers. In 2015, the Health Resources and Services Administration’s (HRSA’s) Geriatrics Workforce Enhancement Program (GWEP) provided $35.7 million to 44 academic medical centers in the United States with the goal of transforming geriatric education and training. The central focus of the program is on integrating geriatrics into primary care through education and training. Special emphasis has been placed on collaborating with
community partners to address gaps in health care for older adults and to promote individual-, system-, and population-level changes. Thirty-eight of the first 44 awardees created training programs in Alzheimer’s disease and related dementias to educate families; caregivers; direct care workers; and health professions students, faculty, and providers. In 2019, HRSA funded its second cohort of 48 GWEP programs across 35 states and 2 territories (Guam and Puerto Rico), and provided extension grants to 15 former GWEP awardees. All GWEP awardees are educating and training the workforce on how to care for persons living with dementia. Of the $35.7 million GWEP budget, $8.7 million was for dementia education and training activities. In academic year 2018–2019 (latest available data), GWEP grants provided 445 courses and trainings in Alzheimer’s disease and related dementias for 73,115 health care providers and 24,434 caregivers (Office of the Assistant Secretary for Planning and Evaluation, 2020).
The effectiveness of such training on the care received by persons with dementia remains unknown. Similarly, the supply of specialists in hospice and palliative medicine is already insufficient to provide treatment for everyone with an advanced illness, and limited knowledge of basic palliative care among nonspecialists has led to deficiencies with respect to end-of-life care (IOM, 2015). The 2015 IOM report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life suggests enhancing the curricula for medical schools, increasing interprofessional collaboration, and building communications skills in graduate and undergraduate education to better prepare physicians, nurses, and other professional health care workers to meet patients’ basic palliative care needs, suggestions that mirror similar findings regarding health care delivery for older adults described below (IOM, 2015). The 2015 National Academies’ report Improving Diagnosis in Health Care also recommends that greater emphasis on teamwork and education be an essential component of education and training around the diagnostic process (NASEM, 2015).
Finally, there has been substantial progress on the third prong of the IOM approach, redesigning models of care and broadening provider and patient roles to achieve greater flexibility. These models hold the potential for more efficient and effective use of the limited workforce. Examples of such models of care are provided in Chapter 6. Yet to date, these models have seen limited spread, largely because of the lack of payment structures that adequately cover the costs of providing services (Lees et al., 2020).
THE DIRECT CARE WORKFORCE
The direct care dementia workforce, comprising certified nursing assistants (CNAs), home health aides, and personal care aides, provides care primarily in nursing homes, home care, and community settings. They
represent the most numerous paid dementia providers and make up nearly one-third of the overall U.S. health care workforce (Warshaw and Bragg, 2014; Osterman, 2017). More than 4 million CNAs, home health aides, and personal care aides provided long-term services and supports in 2017, and by 2024 this workforce will grow to 5.2 million (Espinoza, 2017). These workers “hold in their hands the quality of care and quality of life of individuals with dementia” (Gilster et al., 2018).
The jobs performed by direct care workers may entail high levels of physical and emotional stress—for example, requiring workers to lift and clean persons who may resist assistance or respond with fear and aggression. Because people living with dementia often need 24-hour care, many of these workers have demanding schedules. Yet their salaries are typically low, and many such jobs come with limited or no benefits. Indeed, direct care providers were exempt from federal minimum wage and overtime standards for many years, until that ruling was set aside in 2017. Now, they are generally entitled to minimum wage and other protections long enjoyed by fast food workers, but many still lack health benefits and paid time off, a problem highlighted during the COVID-19 pandemic. Many work full time yet still must rely on food stamps and other government programs to support their families (PHI, 2018).
Direct care workers are disproportionately women and members of minority groups, and approximately one-quarter to one-third are recent immigrants (PHI, 2018; IOM, 2008). Immigrants who serve as health care workers may not be fluent English speakers and may lack knowledge of U.S. work culture and laws. Those who are undocumented face additional challenges, and race and gender discrimination have affected many workers in this field (Espinoza, 2017; Hartmann and Hayes, 2017). Studies of this population indicate that foreign-born home care workers face the worst gender pay gaps, are disproportionately poor, and are often subject to abuse and exploitation (Gould et al., 2016; Zallman et al., 2019; Green and Ayalon, 2018). Recent immigrants frequently need training to qualify for jobs, as well as support in navigating legal frameworks for entry, work, and long-term legal status (Hartmann and Hayes, 2017). The diversity of the direct care workforce also presents challenges to providing culturally sensitive care, as the person living with dementia and the direct care worker frequently do not share the same cultural background.
Pay for this workforce varies by location and the tightness of the job market, but in 2019, the median annual income for home health aides was $25,280 ($12.10 per hour) and for CNAs was $29,640 ($14.25 per hour) (BLS, 2020). Two in five home care workers report working part time (less than 35 hours per week) (PHI, 2018). Many direct care workers are employed by multiple companies and/or are paid under the table
States have two routes for regulating the quality of the direct care workforce—through regulations imposed on facilities that employ the workers and through the certification of categories of workers (Burke and Orlowski, 2015). However, many workers are employed in settings other than residential facilities, especially private homes, or have not obtained the certifications that require training in dementia care. Moreover, states vary significantly in what they require for job categories related to dementia care. For example, there are three states that require training for administering medication, providing assistance with feeding, and providing respite care, respectively, but there is no overlap among these three states (Burke and Orlowski, 2015). One reason for the variation may be lack of consensus on definitions of the elements of quality caregiving and competencies that care providers need to have (Weiss et al., 2017).
RECOMMENDATIONS OF THE 2017 NATIONAL RESEARCH SUMMIT ON DEMENTIA CARE
The task force established after the 2017 National Research Summit on Dementia Care to address the goals of improving the quality of care and services for persons living with dementia has offered recommendations for research to address gaps in education and training in four areas (Weiss et al., 2020):
- recruitment and retention of a dementia-capable workforce,
- financing and cost of workforce education and training,
- interprofessional education and training for care coordination and management of dementia care, and
- translation and implementation of effective dementia care.
For each of these areas, the task force offers more detailed research objectives.
The 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers also addressed workforce issues and identified several specific gaps and opportunities for further research, including the following (National Institute on Aging, 2020):
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