The National Dementia Workforce Study: Development of Questionnaires for Home Care, Assisted Living, and Nursing Home Settings

ABSTRACT

The growing aging population and rising prevalence of dementia are driving increased demand for long‐term care services and supports in the United States. People with dementia require substantial support and care, often from direct care workers in private homes, assisted living communities, and nursing homes. Despite their crucial role, these workers receive highly variable training, particularly in dementia care, and face significant work‐related challenges including stress, injury, and burnout. The National Dementia Workforce Study (NDWS), sponsored by the National Institute on Aging, was designed to include large‐scale, nationally representative annual surveys of staff and administrators providing care to individuals with dementia in home care, assisted living, and nursing homes, and of community clinicians practicing across settings. NDWS will capture workforce demographics, training adequacy, job satisfaction, and their impact on dementia care quality. This report describes NDWS's rigorous process for questionnaire design for the initial wave of home care, assisted living, and nursing home surveys. Our survey development methods integrated literature reviews, validated questionnaire items, expert consultations, and cognitive interviews to ensure instrument reliability and validity. Resulting survey data will be available to researchers seeking to examine workforce conditions, training, and worker knowledge, and their impact on care for people with dementia. NDWS infrastructure will also allow researchers to link survey responses with administrative and medical claims data to examine how workforce dynamics and organizational factors are associated with outcomes for people with dementia over time, enabling insights into policies to improve dementia care training, workforce retention, and care delivery.

Summary.

• Key points

  • ○
    The National Dementia Workforce Study (NDWS) is poised to be the first nationally representative study examining workforce dynamics, training, and job satisfaction among direct care workers and administrators who are serving people with dementia in home care, assisted living, and nursing home settings.
  • ○
    NDWS questionnaires for the initial survey wave were developed using a rigorous process and cover critical topics such as education, training, employment status, dementia care knowledge, attitudes, care practices, worker outcomes, and organizational characteristics.
  • ○
    Survey data will be made available to the research community and will enable investigation of factors that influence workforce stability and effectiveness, to inform targeted interventions to improve dementia care quality.
• Why does this matter?

  • ○
    Direct care workers are the backbone of dementia care, yet they often face low wages, high turnover, limited career advancement, and inadequate training, which strain the workforce and compromise the quality of care it can provide.
  • ○
    The National Dementia Workforce Study (NDWS) will collect the first nationally representative data that will allow researchers to generate evidence‐based recommendations to improve workforce training, recruitment, retention, and effectiveness.

1. Introduction

The United States' growing population of older adults is leading to greater demand for long‐term services and supports (LTSS), which encompass paid and unpaid personal care and medical services that support people with chronic illness or disability [1]. It is estimated that 56% of adults who turned 65 years old in 2022 will require some paid care over their lifetime, with 22% requiring this help for more than 5 years [2]. The number of adults aged 65 years and older is projected to increase by 47% between 2022 and 2050 (reaching 82 million), and the number of adults over the age of 85 is expected to increase by 168% over this same period [3]. Parallel increases are expected in the number of people with dementia [4], who receive home health care services at more than double the rate of other Medicare beneficiaries and are admitted to nursing homes at more than four times the rate of their peers [5]. These trends are expected to place major demands across health care systems, organizations, and workers providing care.

LTSS needs typically increase with the progression of dementia [6]. According to data from the 2015 National Health and Aging Trends Study, among those with dementia and significant functional impairment, about half received paid care in the home, with an average of 50 h per week [7]. When home care is no longer feasible, many individuals move into assisted living communities, which have been expanding rapidly across the United States [8]. These communities are now the primary residential provider of personal care services for people with dementia [9], and nearly one‐quarter of assisted living communities offered memory care services in 2016 [10]. Many individuals require more intensive services provided in nursing homes and skilled nursing facilities, and it has been estimated that more than half of nursing home residents have Alzheimer's disease and related dementias [11]. A growing number of nursing homes have units that offer care services focused on people with dementia, including special activities, meals, and access to specially trained staff [12, 13].

These three settings (home care, assisted living, and nursing homes) employ a wide range of staff. The largest segment of this workforce is “direct care workers,” including occupations such as certified nursing assistants (CNAs), home health aides, personal care aides, medication aides, and people with other job titles who provide daily personal care services. There were an estimated 1.5 million nursing assistants and 4 million home health and personal care aides in the United States in 2023, with this segment of the workforce projected to grow by 885,000 jobs by 2033. This represents a 12.5% growth rate, compared to the average 4% growth for other occupations [14, 15]. Within home health and home care agencies, individuals in these roles provide essential daily support, such as assistance with activities of daily living, personalized care, and support for overall wellness [16, 17, 18]. In assisted living communities, services are provided by CNAs, personal care aides, activity staff, and other direct care workforce professionals. Nursing homes are required to employ CNAs in direct care roles and may also employ other direct care workers in other supportive roles [19]. These direct care roles are complemented by registered nurses (RNs) and licensed practical/vocational nurses (LPNs/LVNs), who together represent the second‐most common occupation in long‐term care. Across all three settings, licensed nurses develop care plans, coordinate and supervise care, and administer medications and treatments.

This large workforce is heterogeneous both between and within roles, particularly in dementia care. For example, whereas federal regulations require that home health aides and CNAs each receive a specified number of hours of training, the number of required hours varies by state. Not all states have training requirements for personal care aides [20, 21, 22]. Training programs often focus on providing physical support (e.g., assisting with mobility) and do not address the broad range of support that direct care workers actually provide, such as addressing behavioral expressions (previously referred to as behavioral and psychological symptoms of dementia) and reminding clients to take their medications [22]. Information gleaned in expert workgroups and interviews with direct care workers and nurses indicates that their training rarely includes much information about supporting people with dementia [23, 24]. At the same time, the development of expanded training requirements and enhanced educational programs is hindered by a lack of research identifying which specific components of knowledge would be most important in preparing direct care workers to provide high‐quality care for people with dementia who need LTSS.

There is also a need for data to inform policies to improve satisfaction and safety among the workforce that serves people with dementia, who face significant work‐related stress. Direct care workers and nurses in long‐term care settings have high rates of back and other musculoskeletal injuries due to the physical demands of their jobs, emotional strain from caring for people with serious illness and disability, long work hours, and difficulty managing clients who exhibit difficult behaviors and/or may be unable to express their needs [25, 26]. It is well established that these challenges are associated with job dissatisfaction, high rates of burnout, and increased intention to quit their jobs [27], but less is known about the effectiveness of strategies that might improve the work experiences of those serving PLWD.

To address these gaps, the National Dementia Workforce Study (NDWS), sponsored by the National Institute on Aging, was designed to be the first large, nationally representative study of the dementia care workforce in the United States. It consists of four distinct surveys, to be fielded annually, that sample staff and administrators in home care, assisted living, and nursing home settings, as well as community clinicians (e.g., physicians, nurse practitioners) across settings. Survey data will be made available to the research community and can be linked with other data about respondents' employers and the residents and clients they serve, providing researchers with opportunities to generate new insights about the workforce itself (including their quality of life) and their contributions to quality of care and quality of life for people with dementia and their families. This report describes the design process for the first wave of questionnaires to be completed by staff in home care, assisted living, and nursing home settings, as well as by the administrators of these organizations. Additional information on the NDWS, the sampling approach for these surveys, and the Community Clinician Survey may be found in the companion articles in this special collection.

2. Methods

2.1. Overview of Questionnaire Design Process

Our questionnaire design process was guided by a conceptual framework derived from the Donabedian and Quality Health Outcomes models, as described by Maust et al. [28]. To ensure that the surveys could accommodate the complexity of our target population, settings, and topics, the questionnaires were developed by workgroups that included researchers and clinicians with expertise in the health care workforce, labor economics, dementia, geriatrics, gerontology, nursing, neurology, geriatric psychiatry, occupational health, psychology, neuropsychology, social work, public health, medical anthropology, sociology, health services research, health policy, public policy, ethics, and survey methods. Survey leads were designated for each care setting (home care, assisted living, and nursing homes) as well as for the NDWS Community Clinician Survey, which is described elsewhere in this special collection [29]. The survey leads met weekly to ensure consistency of common questions, such as demographics, across all questionnaires. The home care, assisted living, and nursing home questionnaires were developed in parallel with one another so that only minimal setting‐specific modifications to survey items were needed.

The process of questionnaire design is depicted in Figure 1 and included a variety of methods, described in detail below, that supported the creation of questionnaires that would be reliable and valid [30, 31, 32, 33]. The workgroups initially focused on the development of questionnaires for staff, including nurses and direct care workers, and then developed questionnaires to be completed by organization leadership (i.e., administrators) to capture additional information about the organization's structure, services, and employment practices (e.g., procedures for training new staff).

FIGURE 1.

Staff and administrator questionnaire design process.

2.2. Literature Review

We conducted an extensive review of the literature to identify prior surveys of nursing staff, direct care staff, and administrators in home care agencies, assisted living communities, and nursing homes, as well as previously validated measures of key concepts of interest (e.g., dementia knowledge). Surveys previously conducted by members of the NDWS team were included in this review, such as the 2022 Survey of California Registered Nurses [34], the 2018 Survey of Director of Nursing Perceptions of Physicians' Roles in US Nursing Homes [35], the University of California San Francisco 2015 Surveys of Long‐Term Facilities and Home Health Agencies in Arizona [36, 37], surveys of internationally educated nurses in nursing homes [38], and the numerous Collaborative Studies of Long‐Term Care [39, 40, 41]. We also drew on the National Post‐acute and Long‐term Care Study (NPALS) Direct Care Worker Pilot Study [42] and the National Institute for Occupational Safety and Health (NIOSH) Worker Well‐Being Questionnaire (WellBQ) [43].

A key source for questionnaire items was the U.S. Health Resources and Services Administration's (HRSA) “Minimum Data Set” recommendations for surveys of health professionals [44], which focus on four areas: demographics, education, employment, and practice. They suggest that questionnaire items include birth date (or age), sex, race, ethnicity, country of birth, languages spoken fluently, initial profession‐related education completed before entering the profession, year of completion of initial professional education, location of initial education, highest level of professional education, first year of licensure or certification, clinical/care specialty, employment status, employment setting, job title, number of positions held, hours of work by activity (e.g., patient care, administration, teaching), patients served (e.g., age groups, payer types), and retirement intentions. The HRSA recommendations have been adapted to multiple professions, including licensed nurses, physician assistants, and physicians [45].

Of particular interest was measuring staff knowledge, attitudes, and skills related to dementia. The workgroup closely reviewed validated scales in these areas, including the Sense of Competence in Dementia Care Staff (SCIDS) scale [46], the Alzheimer's Disease Knowledge Scale (ADKS) [47], the Dementia Knowledge Assessment Tool (DKAT) [48], the Dementia Knowledge Assessment Scale (DKAS) [49], Confidence in Dementia Scale (CODES) [50], the Knowledge in Dementia Scale (KIDE) [50], the Dementia Attitudes Scale (DAS) [51], and the short form of the Dementia Attitudes Scale (DAS‐6) [52].

In total, the literature, validated scales, and prior survey instruments numbered in the hundreds. We prioritized content that was most consistent with our conceptual framework [28] and study goals; when possible, we drew from previously validated questions.

2.3. Solicitation of Ideas for Questionnaire Content

In November 2023, we began soliciting ideas for questionnaire content through a simple online form available on the NDWS website. We announced the opportunity to contribute proposals for both general topics and specific questions to relevant professional associations and their affiliated interest groups (e.g., the Society for Post‐Acute and Long‐Term Care Medicine [AMDA], the Paid Caregiving Interest Group of the Gerontological Society of America), industry associations (e.g., Association of American Medical Colleges, LeadingAge), and dementia and long‐term care advocacy organizations (e.g., Alzheimer's Association, PHI), via direct emails, email distribution lists, and discussion boards. Members of the NDWS team also shared the solicitation on social media (e.g., Bluesky) and directly with colleagues who conduct research and/or provide clinical services related to people with dementia and/or the health workforce. By mid‐December 2023, we had received 29 responses for the nursing home questionnaire, 26 for the assisted living questionnaire, and 22 for the home care questionnaire. Responses were organized into content themes, which were then prioritized by the workgroups for question development.

In January 2024, the NDWS team held a focus group with the Alzheimer's Association's Early Stage Advisory Group, which convenes individuals with personal experiences with Alzheimer's disease and related dementias to provide input to external groups. The discussion focused on clinician services and home care services, as Advisory Group members were living at home and thus had minimal experience with assisted living or nursing homes. Content themes from the focus group informed the prioritization of topics for the questionnaires.

2.4. First Draft Development, Reviews, and Cognitive Interviewing

Drawing on the literature review results, the suggestions gathered from experts in the field, and findings from the focus group with the Early Stage Advisory Group, the questionnaire workgroups developed initial English language drafts of six questionnaires (one questionnaire for staff and one questionnaire for administrators in each of the three care settings). They were designed to be appropriate for a sixth‐grade reading level. Decisions about the order and flow of questions prioritized feasibility and respondent experience to increase response rates. For example, questions about education and training appear early to set the stage for our interest in staff knowledge, and these items are objective and easily answered by most respondents. More complex and subjective concepts, such as confidence in working with people with dementia, appear later in the questionnaires. Finally, personal items that some respondents may view as invasive were placed at the end of the questionnaires, including demographics, family structure, and citizenship.

The initial complete drafts were shared with the National Institute on Aging program and scientific officers, as well as with six external consultants with clinical and research expertise in the areas of interest. The external consultants were also asked to test the time required to complete the questionnaires. Both the National Institute on Aging staff and external consultants provided feedback on questionnaire content and question wording; the study team revised the questionnaires based on this feedback.

Next, the team identified questionnaire items to prioritize for testing via cognitive interviewing. This approach asks individuals who share characteristics with the intended survey respondents to narrate their thought process while completing survey questions in order to assess whether questions adequately convey the intended meaning and whether response options are sufficiently comprehensive, to identify potential points of confusion and corresponding opportunities to clarify wording, and to assess whether respondents can complete survey items easily and quickly. Goals of cognitive interviewing include identifying potential sources of response error or reporting bias, assessing face validity and acceptability, and increasing feasibility. Participants were recruited using electronic fliers shared with relevant groups or lists of people who provide care for people with dementia, including AMDA, the Gerontological Advanced Practice Nurses Association (GAPNA), and the National Association of Health Care Assistants (NAHCA). Additional recruitment was conducted by contacting organizations identified through online searches and by referrals from people who had been interviewed and volunteered to pass information on to other colleagues in the field (i.e., snowball sampling). Candidates were screened to ensure a relevant and diverse sample that was representative of potential English‐speaking survey respondents and included a mix of gender, race/ethnicity, and age groups. Interviews lasted 45–60 min, were conducted via Zoom, and consisted of the interviewer showing the participant questions on the screen and asking them to indicate how well they understood the question and whether they had any difficulties answering it. This process identified incomplete response choices, wording that had multiple potential interpretations, and other issues that would benefit from question revision (see Supporting Information). We conducted a total of 16 cognitive interviews with staff (3 working in nursing homes, 9 in assisted living communities, and 4 in home care settings) and 4 interviews with administrators. Participants were each paid $50 in appreciation for their time.

The team then revised all questionnaires and carefully reviewed them to ensure that items were consistent across questionnaires. Once questionnaires were finalized in English, the staff questionnaires were translated into Spanish versions by certified translators with experience in survey translation. We used existing translations of specific items and scales when they were available. The translated versions were reviewed by NDWS team members who were fluent in Spanish before finalization. All questionnaires were approved by the Michigan Medicine Institutional Review Board.

3. Results

The final nursing home and assisted living questionnaires are nearly identical to each other, whereas the home care questionnaires include additional items (described below). Respondents for the nursing home and assisted living surveys are asked about “residents” and home care staff are asked about “clients.” Figure 2 summarizes the content domains of items in the final questionnaires, and Table 1 provides details about the topics included in each domain for the staff questionnaires. All final questionnaires are available on the NDWS website (https://www.ndws.org/surveys‐and‐data/surveys).

FIGURE 2.

Questionnaire item domains.

TABLE 1.

Staff questionnaire content.

Domain	Topic
Education, training, experience	Licensure, certification, and registration
	Highest level of education
	Current enrollment
	Formal and informal training
	Perception of readiness
	Experience in long‐term care
Employment status	Tenure with the employer from which the worker was sampled
	Number of jobs
	Hours worked per week
	Weeks worked per year
	Usual shift
	Stability of work schedule
	Stability of resident/client assignments
	Residence with a client (home care only)
	Hourly wage
	Benefits
	Source of health insurance
	Transportation to work
	Travel between clients (home care only)
	Working past shift (home care only)
	Ease of contacting agency for help
	Grief support
	Workplace safety
Dementia care knowledge, attitudes, practices	Dementia attitudes
	Confidence working with people with dementia
Worker outcomes	Job satisfaction
	Experiences on the job
	Work‐life balance
	Work‐related injuries
	Burnout
	Intention to quit
	View of organization
Demographics	Birth year
	Race/ethnicity
	Sex
	Sexual identity
	Military service
	Languages spoken
	Disability
	Immigration
	Citizenship
	Deportation concern
	Household composition

3.1. Staff Questionnaires

The final staff questionnaires cover five broad domains: (1) Education, training, and experience; (2) Employment status; (3) Dementia care knowledge, attitudes, and practices; (4) Worker outcomes; and (5) Demographics.

The education and training questions were designed to apply to both licensed nurses and unlicensed staff. Items inquire about whether the respondent is or has ever been licensed, certified, or registered as an RN, LPN, CNA home health aide, personal care assistant, or medication aide, their highest level of education attained, and whether they are currently working toward a healthcare‐related license or certification. Questions also focus on the formal and informal training they have received on a variety of specific topics, including those related to the care of people with dementia and injury prevention. An overall self‐assessment of readiness is also included: “How well did your training prepare you for what it is like to actually work at your current job?” [53].

As described in detail by Wagner et al. [54], respondents for the home care, assisted living, and nursing home surveys are sampled through an employer. Thus, questions about employment status reference the employer and also ask about the number of jobs they currently have in long‐term care and in other fields. Questions about the number of hours per week worked for all of their jobs combined and for the organization from which they were sampled are included. There are questions about the stability of their work schedule [55] and the stability of their resident or client assignments [42]. Several questions focus on earnings and benefits, and questions also inquire about the source of their health insurance, if they have it (e.g., employer‐sponsored, Medicaid). Staff are asked about their method of transportation to work, its reliability, and whether they have missed work or been late due to transportation problems. Home care workers are asked whether they live with a client, the amount of time they spend traveling between clients, and how frequently they have to stay with a client past their authorized hours or shift. They also are asked if they support or interact with clients outside their official work hours, such as visiting them to see how they are doing, communicating with family members, or providing other types of support (e.g., shopping for them). Finally, all respondents are asked whether they have enough support to grieve the loss of a resident/client.

Dementia care knowledge, attitudes, and practices are queried using both validated scales and new items. For example, we include the Short Form of the Dementia Attitudes Scale (DAS‐6), which includes 6 items on a 7‐point Likert scale [52]. A set of 9 items focuses on the respondent's confidence in their care for people with dementia, such as adapting their work to meet changing resident or client needs, maintaining a positive attitude, handling personal care needs (e.g., incontinence), and playing an active role in the care team [46].

Additional questions inquire about worker outcomes such as burnout [56], positive and negative experiences on the job, whether work interferes with their personal life, work‐related injuries, and intentions to stay on the job or quit. A 4‐point Likert scale (very dissatisfied to very satisfied) ascertains satisfaction for 19 items drawn from or adapted from surveys including the California Board of Registered Nursing Survey of RNs [34], the National Post‐acute and Long‐term Care Study Direct Care Worker Pilot Study [42], and the RN4CAST study [57]. Items on positive and negative experiences on the job include whether staff receive praise from supervisors and from residents or clients; whether they have enough time to provide person‐centered care; whether they have experienced communication problems with or disrespectful behavior from supervisors, clients, and/or clients' family members; whether they have experienced direct insults, inappropriate sexual behavior, physical aggression, verbal aggression, or discrimination; and whether they have been injured on the job. Finally, respondents are asked whether they would recommend their organization to family and friends needing care [57].

The demographic questions are identical to those in the NDWS's Community Clinician Survey [29] and include birth year, race, ethnicity, sex, sexual identity, military service, languages spoken, and whether they self‐identify as a person with a disability. Respondents are asked if they are immigrants, if they are citizens, and if they ever worry that they or a family member could be detained or deported [58]. Other questions about their family include their household composition (i.e., number of children and number of adults in the home) and whether they have responsibility for the care of children and/or adult family members with disabilities.

3.2. Administrator Questionnaires

The administrator questionnaires elicit information about their organization's structure and services, staffing, workplace resources, and training practices. Questions about structure include whether the nursing home, assisted living community, or home health or home care agency is owned by a for‐profit, non‐profit, or government entity; whether it is part of a multi‐site entity; whether it is associated with other types of health care organizations such as a hospital; and how long it has been in operation with its current owner. Administrators of assisted living communities and nursing homes are asked about their organization's number of licensed beds and current occupancy, whether they have a dedicated memory care unit, and, if so, that unit's number of licensed beds and occupancy. Questions about the organization's residents or clients include the estimated percentages who have dementia, serious mental illness, or substance use disorders, are enrolled in hospice services, and have advance directives upon admission. The questionnaire also asks about the cost of services for private‐pay clients and residents.

Several questions query whether the organization has an electronic health record (EHR), whether there are multiple electronic systems, whether all documentation is in an EHR, and whether the EHR can be used to exchange information (e.g., laboratory test results) with outside health care providers [59]. A series of questions asks about other agency or facility practices, such as the administration of common assessments (e.g., depression screening) and the frequency of review of advance directives.

The administrator questionnaire also requests information about the number of full‐time, part‐time, and contract staff. For assisted living communities and nursing homes, staffing ratios at specific times of the day are requested for both licensed nurses and direct care staff. One question asks assisted living community and home health or home care agency administrators whether there are staff available to administer medication 24 h per day, 7 days per week. Assisted living administrators are asked about on‐site medical care provided by physicians, nurse practitioners, and physician assistants. Several questions focus on the stability of the organization's leadership, including the number of administrators and the number of nursing directors or health care supervisors the organization has had in the prior 5 years.

A series of questions focuses on the benefits offered to full‐time staff. To accommodate different definitions of “full time” across organizations (e.g., number of hours in their standard full‐time work week), respondents are asked to respond according to the definition of “full time” that they use for their employment designations. Respondents are also asked to indicate which job titles, if any, are represented by a union. There are also questions about training provided to newly hired staff and in continuing education, including content specific to the care of people with dementia.

4. Discussion

Our efforts to take a comprehensive, multi‐step approach to the creation of questionnaires for staff and administrators of home health or home care agencies, assisted living communities, and nursing homes resulted in both challenges and opportunities. First, we aimed to use previously validated questions as much as possible, but our comprehensive literature review identified hundreds of articles and questionnaires. This made it challenging to organize questions, identify overlapping concepts, and assess which items were most appropriate for our populations of interest. Further, many validated scales had been designed for one occupation or setting of care, such as RNs in nursing homes, and were not appropriate for other occupations (such as CNAs) or other settings (such as home care). We were able to adopt or adapt many of our questions from previous work, with no single prior study contributing the majority of our final questionnaire items. Our team also benefited from engagement with a variety of experts representing various perspectives (including several former long‐term care workers) and from several rounds of question testing and revision, but time constraints restricted our ability to solicit extensive feedback from direct care workers themselves. We expect to obtain more direct feedback as NDWS efforts continue in the coming years, particularly as part of a large, complementary qualitative data collection effort that will engage a subset of survey respondents [28].

As is common in surveys of complex topics, we faced a second challenge in balancing comprehensiveness and brevity. It is well established that shorter questionnaires achieve higher response rates [60], and this required us to omit many potential question domains. Some of the topics we considered but did not ultimately include in our final Wave 1 questionnaires included readiness to provide end‐of‐life care, long‐term career interests and goals, detailed characteristics of the physical work environment, and pain management practices. These and other topics will be reconsidered for inclusion in future survey waves.

A third challenge was balancing the research community's interest in obtaining detailed information about respondents and concerns that some questions would inhibit survey participation. For example, one respondent to our solicitation for study content suggested we ask for detailed information about workers' immigration status because a large proportion of the long‐term care workforce was born outside the United States [61]. However, capturing immigration pathways would have added substantially to the questionnaires' length and raised concerns that workers might not want to or be able to respond in such detail.

Overall, our resulting questionnaires represent novel contributions to the field. In addition, although the purpose of the NDWS is to study the role of the workforce in the delivery of care for people with dementia, many of the questions and topics in the questionnaires apply to the care of any client or resident in our settings of interest and could be adapted to study workforce capacity in other clinical areas. In addition, future survey waves will have a longitudinal component to learn how the workforce changes over time. This design will provide a unique opportunity to generate crucial insights into modifiable factors that drive workforce turnover and to study the relationships between changing work environments and outcomes for people with dementia.

4.1. Limitations

The questionnaire design process and final products have a number of limitations. First, as noted above, the accelerated timeline for questionnaire development prevented our engagement of direct care workers in the design process. Over the course of successive survey waves, we aim to include content directly informed by input from the workforce. Second, a longer testing period would likely have been beneficial, allowing us to conduct more cognitive interviews and to complete additional rounds of review and refinement. The questionnaires will continue to be refined over the course of the NDWS, as five waves of data collection are planned. Third, we did not develop questionnaires in languages other than English and Spanish. In 2015, it was estimated that 6% of the direct care workforce did not speak English well [62]. Among these workers, the most common language spoken well was Spanish (56%), followed by Chinese (7%), Russian (7%), Cantonese (5%), and French Creole (4%). Overall, these data suggest that 2.6% of direct care workers may not be able to respond to the questionnaires if the surveys are limited to English or Spanish. In future years, we will consider whether to translate the questionnaires into any of these other languages.

5. Conclusion

The interdisciplinary, collaborative, multi‐step questionnaire design process described here generated staff and administrator surveys that will capture rich information about the dementia workforce within and across home care settings, assisted living communities, and nursing homes, in order to capture the full spectrum of care. The resulting data will be available to the research community, allowing investigators to gain insight into the role of organizational practices in facilitating (or inhibiting) high‐quality dementia‐related care and better worker outcomes. Future data linkages with administrative and claims data, such as CMS Nursing Home Compare and Medicare claims data, will enable examination of survey data and individual‐level clinical outcomes for individuals with dementia in these care settings, allowing researchers to examine which attributes, training, and work environments are associated with resident and client outcomes.

Author Contributions

Concept and design: All authors. Acquisition, analysis, or interpretation of data: Not applicable. Drafting of the manuscript: Joanne Spetz, Joanie Rothstein, Amy R. Pettit. Critical revision of the manuscript for important intellectual contributions: All authors. Final approval of the published version: All authors.

Disclosure

As part of a collaborative U54 agreement, the National Institute on Aging has had input into the design and conduct of the National Dementia Workforce Study. However, the sponsor did not have a role in the preparation, review, or approval of this manuscript, nor in the decision to submit the manuscript for publication.

Conflicts of Interest

The authors declare no conflicts of interest.

Linked Articles

This publication is part of the special collection of National Dementia Workforce Study. To view all articles under this special collection visit https://agsjournals.onlinelibrary.wiley.com/doi/toc/10.1111/(ISSN)1532‐5415.national‐workforce‐study.

Supporting information

Data S1: Supporting Information.

Spetz J., Wagner L. M., White E. M., et al., “The National Dementia Workforce Study: Development of Questionnaires for Home Care, Assisted Living, and Nursing Home Settings,” Journal of the American Geriatrics Society 73, no. 11 (2025): 3344–3353, 10.1111/jgs.70048.