Empowering a person-centered long-term care workforce

Abstract

Currently there is a crisis in the long-term care workforce, as many workers experience poor pay, a lack of training, burnout, low quality working conditions, and physical strain, which is leading to a workforce shortage. To address this, the Alzheimer's Association Dementia Care Provider Roundtable (AADCPR) convened a panel of direct care workers to discuss and provide direction on their view of the current state of the workforce. From this panel, five touchpoints for hiring and retaining direct care workers were highlighted: high quality jobs; recruitment and reputation management; onboarding; retention; and training and career advancement. In addition, the DCPR put together a set of standards to follow to meet these needs, which includes promoting staff dementia education opportunities, creating recommendations around peer mentoring programs specific to dementia care, and increasing inclusion of direct care workers in decision-making and plans of care.

Highlights

• Presents the current state of workforce in long-term care.
• Provides five touchpoints that long-term and home and community-based services should implement for hiring and retaining direct care workers.
• Recommends a set of standards to follow to meet the needs of the workforce within long-term care.

1 INTRODUCTION

Millions of Americans receive essential services through long-term and home and community-based care (HCBS), and this population is growing rapidly. Currently ≈13.9 million Americans receive home care,¹ 4.5 million receive Medicare skilled home health care through 12,200 agencies,² 1.3 million reside in 15,600 nursing homes,³ and 818,800 reside in 30,600 assisted living facilities.⁴ A little over one half of Americans will utilize long-term care (LTC) services at some point in their lives, with 13.9% receiving such services for 5 years or longer.⁵ Many of these individuals have complex medical issues, including dementia, with the most common type being Alzheimer's disease. Alzheimer's disease affects approximately 7 million people today and will affect up to 12 million by 2050.^{6, 7} More than 75% of persons living with dementia eventually require residential long-term care.⁸ Demographic changes are adding significant pressure to the situation. The number of U.S. adults who are 65 or older will nearly double by 2060, and the number over age 85 will triple, but adults 18–64 years of age will increase by only 15%, dramatically affecting the potential supply of both family and paid carers, especially in rural areas.^{9, 10} Of course, a stable and strong workforce is critical to maintaining the availability and quality of care provided to this large and rapidly growing population of frail older adults.

Direct care workers comprise the majority of staff in residential and home-based care.¹¹ Known as nursing assistants, personal care aides, residential care aides, home health aides, and by other names, over 4.5 million are employed in the United States, of which 2.3 million are home care workers, over 700,000 are residential care aides, over half a million are nursing assistants in nursing homes, and another nearly 1 million are employed in other settings, such as hospitals.¹² Growth in the demand for direct care workers, is outpacing any other U.S. occupation and accounts for the majority of job growth in LTC.¹³ Over the next 10 years, the home care workforce is expected to grow by 37% and the residential care workforce is expected to grow by 22%.¹² Indeed, 1.3 million new jobs are projected over the next decade, and an additional 6.9 million will require filling as today's direct care workers retire or leave the field.¹² These astonishing figures have experts deeply concerned, especially in light of currently hiring challenges.¹⁴

2 HISTORY OF DIRECT CARE WORKFORCE AND STAFFING SHORTAGES

Historically, direct care workers have been undervalued in policy, practice, and perception. The large majority (88.5%) are women, only 19% have a college degree, and a disproportionate number are women of color and immigrant women.^{12, 14} The median wage of $13.36 for direct care workers is over one third lower than the national median wage, one in 10 direct care workers live below the poverty level, and they are less likely than workers in general to have employer-sponsored health insurance or retirement plans.¹⁴ At the same time, the job involves serious physical and emotional risk. Direct care workers have one of the highest rates of workplace injury and violence of all occupations: 337 per 10,000 workers as compared to a U.S. average of 100 per 10,000.¹⁵ Historically, turnover rates of direct care workers range from 40%–60%, and within assisted living (AL) from 55% to 200%.^16-18 A national snapshot found that 25% of direct care workers were looking for a new job and 45% were somewhat or very likely to leave their job in a year.¹⁹ Turnover is costly in terms of hiring and retraining, leads to burnout of remaining staff as they try to compensate for staffing shortfalls, and reduces the quality and consistency of care because workers are less experienced and less likely to develop strong relationships with the persons under their care.^20-22 In addition, turnover can lead to shortcuts in training, which can contribute to reduction in quality and consistency of care.

Decades-long problems relating to large daily staffing fluctuations, high staff turnover, low weekend staffing, and understaffing in general^23-25 in LTC were spotlighted and amplified by the coronavirus disease 2019 (COVID-19) pandemic. During the pandemic, some residential LTC communities furloughed staff, whereas others faced even more severe staffing shortages due to staff quarantines, illness, burnout, family responsibilities (e.g., remote schooling), fear of contracting the novel virus and becoming a vector (heightened by insufficient personal protective equipment [PPE] and testing that continued for months), and the difficulties of hiring in the midst of a pandemic. In addition, significant levels of depression, anxiety, and insomnia were documented among health care workers during the pandemic, especially among frontline workers and women.²⁶ But although hospital workers received well-deserved accolades as heroes in the fight, LTC providers doing equally demanding and risky work felt invisible or worse, as they were at times targeted for blame in infection hotspots. And although employment levels in the private sector generally have mostly returned to pre-pandemic levels, LTC is still seeing double-digit shortfalls.¹⁴ Virtually all residential LTC settings—99% of nursing homes and 96% of AL communities—are short-staffed, and many severely so.²⁷ The combination of population aging and national level hiring issues exacerbated by the pandemic has led to a remarkable change in the power dynamics of direct care worker hiring and retention. Between unfilled positions, turnover rates, the costs of contract labor, and increasing lengths of time required to fill positions, one long-term care director stated starkly that, “We are hiring bodies now.” Although restaurants and other businesses can limit their services or shorten their hours of operation in the face of short staffing, insufficient staff in long-term care settings can result in reduced care quality and closings. The most greatly affected will be lower income individuals and providers who accept Medicaid, thereby further increasing health care and social disparities. The overall result is a philosophical shift among providers from one in which they may have viewed these workers as “replaceable” to one in which it is understood that direct care workers are the heart of the business.

3 FUTURE OPPORTUNITIES FOR DIRECT CARE WORKFORCE AND STAFFING

The Alzheimer's Association Dementia Care Provider Roundtable (AADCPR) is a consortium of thought leaders from the dementia provider service continuum spanning nursing homes, assisted living, life plan communities, home care, and adult day care. The mission of the AADCPR is to advance care and support services for people with Alzheimer's and related dementias (ADRD) and their care providers, both informal and formal, through the dissemination and adoption of evidence-based practice recommendations.

The Roundtable meets quarterly, twice a year in person. The focus of the June 2022 in-person meeting was on creating a person-centered long-term care (LTC) workforce. A leader in the field facilitated the meeting, led discussions, and conducted breakouts with the Roundtable members around the five touchpoints for hiring and retaining direct care workers in LTC, which will result in the Roundtable members developing an action plan to follow in the coming years.

The DCPR is composed of a diverse group of leaders in long-term and community-based services who come together to advance quality dementia care. The vast majority of them have front-line experience in administration, nursing, social work, direct care, and more. Those experiences inform them in their leadership positions in their organizations to change the culture. Collectively, the Roundtable members serve over 600,000 people daily, manage over 5300 points of services in all 50 states and 15 countries, and support ≈400,000 staff.

Members of the DCPR view the direct care worker crisis firsthand but, as with any crisis, they also see exciting possibilities. The policy window is open, as LTC, the LTC industry, and the staffing crisis become part of state and national discourse to an historic degree. The American Rescue Plan Act (ARPA) of 2021 included a temporary boost in federal matching for HCBS and dementia care training, and some states used ARPA funds to increase wages and benefits for direct care workers.¹⁴ The White House and President Biden have recently established the Nursing Home Minimum Staffing Rule, which establishes nursing home reform to receive federal funding.²⁸ The National Academy of Sciences, Engineering, and Medicine's most recent consensus study report, entitled “The National Imperative to Improve Nursing Home Quality,” has as its second goal to ensure a “well-prepared, empowered, and appropriately compensated work force.”²⁹ These are just a few examples of the renewed attention being paid to LTC. At the same time, the industry is wary of regulations that could unnecessarily increase costs and weigh down future progress. Time is of the essence if we want to guide these actions into the kinds of meaningful, systemic, and lasting changes that have been needed for so long.³⁰

In 2020, the Paraprofessional Health Care Institute (PHI), which works to improve eldercare and disability services and is a leading authority on the direct care workforce, offered a framework for understanding direct care job quality.³¹ Twenty-nine elements were spread across five main pillars: quality training, fair compensation, quality supervision and support, respect and recognition, and real opportunity. Quality training is accessible, culturally sensitive, relevant to the duties of the job, and offers formal documentation of completion. Fair compensation begins with a living wage as a base wage, plus access to full-time work, consistent scheduling, benefit plans, paid sick and family medical leave, asset development programs, and access to pay increases based on merit, longevity, or other factors. Quality supervision and support involves clear job requirements and reporting structures, access to supplies to ensure safety, connection to peer mentors and supportive supervision, and connection to community-based organizations that can assist with employment-related barriers. Respect and recognition revolve around diversity, equity, and inclusion, as well as consistent feedback (both giving and receiving) and opportunities to influence care planning and coordination. Finally, real opportunity refers to continuous learning and promotion opportunities, with organizational commitment to cross-training and connections to external training and development programs, including for other health care and social service careers.

In reviewing these pillars in light of current historic staffing issues and through the lens of our significant real-world expertise as LTC providers, the Roundtable sought to distill them into a set of highly practical “touchpoints” centered on hiring and retention. We present these recommendations where, in our view, the future of the “heart” of LTC in the United States will be lost or gained. Finally, we describe the concrete steps that the Roundtable intends to explore and put into place as part of our commitment to augmenting the stability and health of the direct care workforce. Themes from a panel of direct care workers at a recent roundtable meeting are illustrative and consistent with the points that follow. In June 2023, a Roundtable meeting included a panel of five direct care workers from Roundtable member organizations. The direct care staff worked in nursing homes, AL, memory care, and home care. Their participation reinforced the importance of their voice, feedback, and suggestions for improvement.

4 FIVE TOUCHPOINTS FOR HIRING AND RETAINING DIRECT CARE WORKERS IN LONG-TERM CARE

4.1 High quality jobs

The first step to successful hiring and retention is to offer a high-quality job. All workers want livable and competitive wages along with good benefits. Some gains have been made as a result of the pandemic, but they need to be maintained and expanded upon in order to remain competitive. However, the relative importance placed on salary, insurance coverage quality, childcare options, retirement benefits, tuition reimbursement, and other benefits will vary for each person. Thus, although the complete package must be attractive, the ability to tailor the package to fit each person's (and family's) needs is a substantial selling point. At the organizational level, this requires that human resources personnel have adequate options to offer. For example, offering flexible spending dollars: an employee can receive a lump sum each month as a benefit that they can spend however they need to—health insurance, student loan payment, childcare, and so on. Flexibility and autonomy are also key with regard to scheduling. Direct workers place great value on self-scheduling, and will even accept a lower wage to obtain it. Similarly, settings should consider offering higher wages for less preferred hours. Maximizing choice, flexibility, and self-determination are all part of creating a person-centered approach to job quality.

But wages and benefits are not the primary reason people work in LTC; rather, these jobs are a calling. Direct care workers seek fulfillment through helping others, and especially the most vulnerable and frail among us. Most are the carers within their families, and many were drawn to the field after experiencing first-hand the difference that direct care workers make in people's lives. Being able to share their gifts is a part of their personal remuneration for taking these highly physically and emotionally challenging jobs, but that does not mean direct care staff are willing to be taken advantage of on the job or by society. A high-quality job, therefore, also provides workers with the sense that they are a part of something larger— something noble. Direct care workers want to be able to love and feel proud of their organization in terms of its brand reputation and quality. Equally, they want their organization to value them as diverse individuals. This includes protecting them during a crisis such as a pandemic, both in practical ways (protective gear and training) and in publicly defending the work they are doing. Finally, they expect to be surrounded by staff who, like them, are supportive and giving, within a work culture that provides the space, communication, and time to develop a strong sense of community and of working together as a team.

4.2 Recruitment and reputation management

With the key components of a high-quality job in place, the next touchpoint is to communicate with potential hires effectively and efficiently. This includes advertising, the application process, use of technology, and the use of bonuses. Compared to traditional job advertisements, today's workforce wants more detailed ads that feature actual workers rather than models. Using social media tools, ads can be targeted to specific demographics, thereby increasing their cost effectiveness. Metrics can be used to refine content and targeting in order to perfect reach and results.

The application process itself should be simple to access and complete. Potential hires should be contacted within an hour and scheduled for an interview. This requires the use of updated technologies such as texting, self-scheduling, application dashboards, applicant tracking systems, and an option to chat online with human resources. As such, increasing the recruitment budget and having dedicated, full- or part-time human resources personnel with up-to-date social media and strong communication skills will improve hiring while boosting the reputation of the company. Larger organizations may consider creating a “workforce taskforce” that meets regularly (even daily) to review response rates and other data. Finally, drug screening and background checks should be free, and organizations should consider sign-on and referral bonuses, or even regional recruiters. Although these efforts require budgetary investments, the ease and transparency of applying, as well as the promptness of the response, are early signifiers to applicants of the quality and culture of the organization.

Partnerships with community-based organizations can also serve as an avenue for reaching potential new hires. For example, partnering with local nursing programs, hosting of onsite certified nursing assistant (can) classes, and working with veteran, seniors/retirees (e.g., faith-based outreach, non-profits such as food banks/shelters looking to give back to their communities and seniors) can all lead to opportunities for recruitment.

4.3 Onboarding

Once hiring has taken place, the next critical step is onboarding or orientation, which extends through the end of the probationary period. Successful organizations have a personalized onboarding or retention plan for new hires, including check lists for days 1–7, 30, 60, and 90. During onboarding, both automated and personal approaches can be used. Automated ones may include team videos, module-based trainings, and automated frequently asked questions (FAQs), whereas personal options include onboarding buddies and peer support. Achieving a good balance of automated and personal approaches—and the onboarding process in general—can be achieved through staff and new hire feedback relating to the onboarding tasks, areas of focus, and other aspects of training. Leadership/management training needs to include a focus on onboarding and not only when/how to obtain staff feedback (i.e., 1–7, 30, 60, and 90 days) but also how to utilize the feedback. Finally, a clear plan needs to be in place relating to probation management. Successful probation management leaves employees with a positive outlook and approach toward the skills they will gain during their new hire period, rather than with a sense of intimidation that their skills are being observed and assessed.

4.4 Retention

High rates of turnover signify that one or more aspects of the job or setting are not meeting worker expectations. Especially in today's high-demand environment, the causes of turnover must be explored and addressed rather than accepted as “normal” for LTC. A first and essential step to monitoring turnover risk is satisfaction surveys. It is recommended that they are offered quarterly during the first year of employment and annually thereafter. Quality circles led by well-liked staff leaders on a quarterly or semi-annual basis can elicit the types of feedback that surveys do not fully capture. When workers provide feedback, always take immediate and visible action on it. When feedback cannot be acted upon immediately, be honest about why that is the case and indicate when action might be possible. When feedback is received, do not assume that you understand the intent (or extent) of the issue. Rather, use the information to ask more questions for clarification and to explore more deeply the full ramifications, causes, and potential solutions for the problem.

Leadership at all levels is key to modeling these approaches, that is, seeking feedback through multiple, regular channels, being receptive to critique; using the critique as an opportunity to obtain additional feedback; and responding quickly. Being available and approachable will create leadership that is well informed about what the team wants and needs. In contrast, leadership inconsistencies lead quickly to dissatisfaction. For example, repeated inequities in shifts, promotions, recognitions, and more-versus-less desirable task assignments may seem like simple mistakes or oversights to leadership, but they communicate a lack of respect to staff.

Some additional areas that are important to retention are coaching, recognition programs, and bonuses. Coaching should take the place of traditional patterns of supervision. Coaches can respond with questions that can help the person arrive at their own solutions. These can include: Tell me more about it? What do you think is going on? How do you think you can handle it? When it happened before, what did you do and how did it work out? Coaching represents a change in culture that creates loyalty and accountability. As one direct worker put it, “We don't have supervisors; we have coaches.” Even our head boss listens to us. He shows a lot of respect for us.’’ In most organizations, training in coaching skills will be needed in order to create a continuous practice of how to be an effective coach, but these investments will pay off in worker satisfaction, team cohesion, and lower turnover rates. Worker recognition through formal and informal programs can be highly valuable to retention, but the recognition must be for something meaningful and not always monetary (e.g., scholarship programs, gas cards, extra paid time off [PTO], bonuses, etc.) and all staff should immediately understand why this person received the recognition and how they can receive it too. Finally, organizations may want to offer retention bonuses to mentors and coaches if the mentee/new hire remains on the job for specific amounts of time. This gives mentors some personal ownership over the mentees’ satisfaction.

4.5 Training and career advancement

Just as the organization has goals for growth, so does each and every valuable worker. From the first day of onboarding onward, workers need to be asked about their personal goals and how the company can help them succeed. If workers are unsure about their goals, mentors and coaches can discuss the types of trajectories they might consider, including outlining career ladders toward other positions of interest. Advanced roles for direct care workers can include dementia care specialists, peer mentors, and trainers. Direct care staff often lack sufficient training to address the medical and psychosocial needs of persons with dementia (e.g., agitation, depression). Having fewer and less well-trained staff is associated not only with poorer quality care and worse outcomes for care recipients, such as higher rates of hospitalizations³² and medication errors,³³ but also higher risk of injury for staff,³⁴ including from residents who are physically agitated. Work-based learning programs are shown to increase job satisfaction among direct care workers.³⁵

When educational goals are met, tuition reimbursements should be offered and plans should be in place for how the organization will respond (e.g., promotions, recognition, new roles, salary, or benefits increases). Personality profile testing can be useful to some employees for helping them discern (or feel more confident about) their career ladder choices. Some employees prefer a steady routine, whereas others enjoy the challenge of regularly learning new tasks and roles. Some want to perfect their chosen role and others want to understand the different components of the organization and how they could work together more smoothly. The concept of a Universal Employee, who gains experience in medication, activities, dietary, and other areas, can move employees toward their ultimate career goals while helping the company maintain staffing flexibility. Employees know when a company is committed to the needs of their employees, and they will respond accordingly with greater loyalty and longevity.

5 CONCLUSION

As mentioned, Alzheimer's disease affects approximately 7 million people today, and more than 75% of persons living with dementia eventually require residential LTC. The failure to solve the dementia care workforce crisis may negatively impact the quality of the care in the future. The workers who keep the LTC sector running, ensuring the dignity, well-being, and survival of millions of Americans, deserve pay, working conditions, and a social status commensurate with those contributions. Especially when combined with their perception of low status as workers, the emotional and relational labor required of direct care workers contributes to stress and burnout. When they feel undertrained, undervalued, and at risk, they are more likely to leave their job and potentially the profession.^36-38 There are a multitude of suggestions for bolstering the number and quality of direct care staff, including but not limited to increased pay, more favorable working conditions, opportunities for advancement, and better and more accessible training.^{12, 39, 40}

As an industry, we must understand the demographics in order to tailor jobs to people, making jobs more attractive and more person centered. But person-centeredness goes deeper than demographic groups. We also need to be hearing from frontline staff frequently and making sure their opinions matter and result in organizational change. What do they need? Are they experiencing and benefiting from the systems that you are trying to put into place? Occasional check-ins feel to staff like the window dressing that they are. Direct care workers need built-in opportunities to be partners in the conversation. In short, if direct care workers are the heart of caring operations, we must make sure we are hearing what they need to continuously measure their pulse in order to be the most successful.

Moreover, in addition to the five touch points explored, the importance of creating a strong sense of community should not be overlooked. Direct care staff should feel valued, have meaningful work, and shown outcomes of their work, proving their work is making a meaningful difference in the community. A strong sense of community can be fostered through connecting all members of the staff from every department, including nursing, housekeeping, maintenance, activities, and dietary. These connections can be made through team-building exercises, regular communication, one-on-ones, and allowing time and space for the staff to get to know each other on a personal level.

As a large group of leading, LTC companies representing the full spectrum of the industry, the Roundtable is eager to do our part to help move the industry forward with regard to workforce issues, taking advantage of the current national spotlight on LTC. As such, we plan to take the following concrete, group actions over the upcoming years. The Roundtable will (1) promote staff dementia education opportunities more broadly, including train the trainer; (2) create recommendations around peer mentoring programs specific to dementia care; and (3) increase inclusion of direct care workers in decision-making and plans of care. For all of these priorities, we will collect data and seek input from frontline workers at our and others’ organizations. As a future direction, the Roundtable would like to open conversation on a full plan on the implementation of these actions and how to measure progress.

ACKNOWLEDGMENTS

Dementia Care Provider Roundtable Members (please visit www.alz.org/dcpr for more information). Julie Ackely - Acts Retirement. Amanda Maske - ALG Senior. Mary Underwood - Artis Senior Living. Joanna Horst, Angelica DiMartino - Bayada Home Health. Maria Nadelstumph, Krissi Kressler - Brandywine Senior Living. Juliet Holt Klinger - Brookdale Senior Living. Beth Durney-Stasyshyn, Joan DiPaola - Care One. Jane Woolson, Kim Bryant - CHI Living Communities. Dawn Platt, Cassandra Engeldinger - Discovery Senior Living. Tim Johnson, Michelle McParland – Frasier. Valerie Cooper - Lutheran Senior Services. Pauline Coram, Terri Lalonde – ProMedica. Stacy Terrell, Lisa Holloway – Kendal. Karen Compton, Megan Krull – Omega. Megan Constatini, Mike Bingham - Presbyterian Homes. Nikki Holmes - Right at Home. Marcia Jarelle – SarahCare. Katie Tardiff, Sarah Fowler – Seniorlink. Kim Butrum – Silverado. Rita Altman - Sunrise Senior Living. Pam Tokarczuk, Michael Wissot - Van Dyk Healthcare. Kelly Ording - Watermark Retirement Communities. This work was not supported by funding.

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to disclose. Author disclosures are available in the Supporting Information.