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. 2023 Feb 28;33(1):22–28. doi: 10.1093/ppar/prac037

Advancing the Research-to-Policy and Practice Pipeline in Aging and Dementia Care

Jennifer L Wolff 1,✉, Danielle Peereboom 2, Nadia Hay 3, Daniel Polsky 4, Katherine A Ornstein 5, Cynthia M Boyd 6, Quincy M Samus 7
Editor: Brian Kaskie
PMCID: PMC9976701  PMID: 36873958

This is a period of striking and unprecedented population aging that involves more individuals not merely attaining old age but reaching very old ages at which they are at heightened risk for chronic age-related conditions such as sensory loss, frailty, functional disability, and cognitive decline (Ortman et al., 2014). The delivery of person- and family-centered care to the right person at the right time and tailored to meet the needs of individuals and families based on their values and preferences to achieve optimal outcomes is thought to represent the pinnacle of health care quality (Berwick, 2009), but is particularly challenging in the care of older persons due to misaligned payment and delivery systems, the complexity and heterogeneity of health and function, and variable treatment preferences and goals (Boyd et al., 2019; Tinetti et al., 2012; Wolff & Boyd, 2015).

Despite major payment and care delivery reforms to promote more comprehensive, coordinated, affordable, and person- and family-centered care, formidable challenges remain for the growing numbers of older adults living with complex health needs. These include high costs and fragmentation of health care and long-term services and supports, inadequate workforce of health care and allied health professionals with competency in geriatric medicine and nursing, and heavy reliance on family and other unpaid caregivers who are often not well supported or prepared for their roles. Within this context, there is a critical need to expand the community of investigators who are trained in health services and outcomes research and public policy, who both understand the specific issues affecting older adults and who possess rigorous methodological training, understanding of health services and systems, and an appreciation of the policy process; have built relationships with advocacy and policy leaders; and thus possess the requisite knowledge to conduct applied policy-oriented research that improves and integrates care for older adults who are frail or have complex health needs such as multiple chronic conditions, dementia, or functional disability.

In this contribution, we describe 2 new National Institute on Aging (NIA)-funded initiatives at Johns Hopkins University that seek to build the field of scholars poised to bridge aging-related research and policy with the goal of translating benefits of the scientific enterprise throughout mainstream care. We briefly describe each program: a T32 training program to support predoctoral and postdoctoral scholars, and a P30 Center grant to build the field of dementia services research. We then discuss how these programs operate synergistically with each other and other institutional initiatives and resources in our community, including examples of research to policy and practice initiatives that pertain to dementia care. Finally, we conclude by discussing generalizable features in our environment that are critical elements in developing the careers of investigators who are equipped to lead multidisciplinary translational applied research teams to benefit the health and lives of older adults through more compassionate, person- and family-centered care delivery and payment systems.

Training Program on Health Services and Outcomes Research for Aging Populations

The Health Services and Outcomes Research for Aging Populations Training Program is a Cross-Institutional T32 Training Program funded by the NIA (T32AG066576) that seeks to develop leaders in health services and outcomes research relating to aging populations. Launched in the fall of 2020, the program provides tuition, stipend, and health insurance to support predoctoral and postdoctoral scholars and provides rigorous training and mentorship in three interrelated focal areas: (1) person- and family-oriented care; (2) organization, financing, and delivery of care; and (3) implementation and dissemination research. The program is housed in the Department of Health Policy and Management of the Johns Hopkins Bloomberg School of Public Health and administered in partnership with the Division of Geriatric Medicine and Gerontology of the Johns Hopkins School of Medicine and is closely affiliated with the Johns Hopkins School of Nursing. This partnership between the three schools, the involvement of faculty with a long and productive history of collaboration, and multiple interdisciplinary policy-oriented interventional and observational activities constitute unique features of our program.

Trainees engage in a variety of didactic and applied learning activities (see Table 1). The main elements of the program are: (1) didactic experiences through required and elective coursework; (2) mentored research experiences; (3) a year-long practicum course to provide exposure to “real world” care of older adults and clinical, financing, organizational, and public policy factors affecting care delivery; and (4) integrative activities that connect didactic training, the practicum, and independent research activities to give trainees a broader understanding of the relevance of applied research, connected through a professional development seminar. These four areas of activity span the spectrum of theoretical and practical learning to prepare graduates to become independent researchers with proficiency in implementation science, a broad understanding of public policy and other factors influencing the care and lives of older adults, and a holistic understanding of key building blocks for a successful research career.

Table 1.

Training Program Components

Component Description
Didactic training Didactic training emphasizes tenets of health services and outcomes research. All trainees complete a three-course sequence to gain a broad understanding of seminal readings, concepts, and skills that are relevant to leading research related to person- and family-oriented care for aging populations:
(1) Health Issues for Aging Populations introduces students to determinants of population aging and its consequences for individuals and society, foundational gerontological frameworks, and cross-cutting social, economic, and policy considerations.
(2) Epidemiology of Aging provides an overview of the epidemiology of major geriatric syndromes, including frailty, disability, falls, and cognitive decline as well as opportunities for primary, secondary, and tertiary prevention.
(3) Methods in Implementation Science provides an overview of the concepts, theories, tools, and methods used to advance implementation research and practice, presented from a multidisciplinary perspective and with presentation of practical applications of those principles in both practice- and research-based settings.
Mentored research Mentored research provides opportunities for applied research and policy experiences and may lead to peer-reviewed publications and presentations to internal and external audiences.
For predoctoral trainees, these experiences culminate in a doctoral dissertation on a health services and outcomes research topic.
Postdoctoral trainees’ experiences are more varied and individualized and developed in close collaboration with primary and secondary mentors with close attention to policy impacts and real-world significance.
Practicum A year-long practicum course provides exposure to “real world” care of older adults, clinical, financing, and organizational aspects of care delivery with a mix of lectures and experiential learning. Both lectures and practical learning experiences draw on the diverse expertise of program faculty and multidisciplinary practitioners in the community.
The practicum is guided by the principle that person- and family-oriented care of older adults must recognize and respect (1) where older adults live and want to live, (2) variability in the services older adults need and want to maximize function and quality of life, (3) that older adults often traverse the continuum of care in accessing necessary health care services, (4) that older adults often benefit from an interdisciplinary team that includes many types of health care and direct care workers as well as family caregivers, and, for each of these 4 areas, financing and regulatory requirements affect the comprehensiveness, quality, and responsiveness of person- and family-oriented care delivery.
Integrative activities Integrative activities connect didactic training, the practicum, and independent research activities to give trainees a broader understanding of the relevance of applied research, and career aspects of being a researcher in the field of geriatrics and gerontology. These include:
A bi-weekly training grant seminar on topics including manuscript writing techniques, presentation skills, grant preparation, job search strategies, and student presentations of research in progress.
Teaching and presentation experience through internal seminars, working groups, and professional meetings and research conferences.
Annual research day organized in conjunction with other aging-related programs within the Institution.
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The program is supported by 50 faculty members from diverse disciplines, including gerontology, geriatrics, economics, epidemiology, nursing, palliative care, health equity, audiology, mental health, and law. These faculty serve as mentors who support trainee development, provide tailored support and guidance on individual research projects, and make links between each trainee’s specific research topic and larger scientific discussions in aging, gerontology, and geriatric medicine. They also participate in seminars and service-learning experiences, provide research opportunities, offer access to data sources, and make connections for trainees with practitioners who are leading health programs for older adults and agencies relating to aging services.

A key objective of the program is to build the field of scholars conducting significant and impactful collaborative research directed at motivating care delivery transformation and the development, adoption, and implementation of evidence-based policies at the local, state, and federal levels. This objective is advanced by deliberatively assembling mentoring teams that include early and later stage investigators from at least two of the three participating schools and by supporting trainees with relevant exposure to policy conversations, access to data resources for policy-relevant applied research projects, and networking opportunities with relevant stakeholders and advocates in their field of interest. By pairing early-stage faculty with senior faculty we seek to facilitate growth in mentorship skills among junior faculty while building the community of scholars across the university who are engaged in collaborative applied health services research related to aging populations.

Hopkins’ Economics of Alzheimer’s Disease and Services Center

The Hopkins’ Economics of Alzheimer’s Disease and Services Center (HEADS) Center is an NIA-funded center on the demography and economics of aging that seeks to catalyze research leading to policy and practice initiatives that reduce challenges for those affected by Alzheimer’s disease and related dementias (ADRD). The Center was launched in August, of 2020 with 2 overall aims: (1) To generate new knowledge concerning ADRD care; and (2) To advance the field of ADRD economics and health services research and its impact by nurturing emerging and established investigators, developing a cutting-edge research infrastructure, disseminating new knowledge, and forging linkages with policy and practice communities. The center focuses on two thematic areas: (1) identifying and quantifying the range of ADRD care needs and related economic consequences and (2) examining how the organization, financing, and delivery of services affects accessibility, affordability, quality, and equity of ADRD care.

The work of the HEADS Center is accomplished through an infrastructure of four cores (See Table 2). The External Research Resources Support and Dissemination (R&D) Core is specifically focused on the research-to-policy pipeline by disseminating and translating findings and research resources so that they reach diverse internal and external governmental, advocacy, and scientific audiences who are positioned to influence policy and clinical practice. The R&D Core amplifies the reach and impact of center activities by pursuing 3 initiatives that interrelate with the overall center aims.

Table 2.

Hopkins’ Economics of Alzheimer’s Disease and Services (HEADS) Center Cores to Support the Research to Policy Pipeline

Core Description
Administrative Core Develops and executes the center’s strategic vision by coordinating and managing research, methods, data, community-building, and dissemination activities
Organizes a monthly seminar series that convenes core and affiliate members to present on contemporary policy issues related to ADRD care and services, research in progress, and completed research studies that are aligned with HEADS Center themes
Program Development (Pilot) Core Provides funding, interdisciplinary research mentorship, and monitoring of novel pilot studies that advance research within center themes to develop the careers of researchers and attract new investigators to the field
External Research Resources Support and Dissemination Core Facilitates use of research resources
Disseminates scientific evidence developed within our themes
Nurtures partnerships with key stakeholders and advocacy organizations to translate findings into policy and practice
Remote Data Enclave Core Supports a high-capacity, secure computing environment that can generate new research and support investigators pursuing projects within our themes by leveraging linkages among ADRD-related data sets, many with strict security requirements
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Note: ADRD = Alzheimer’s Disease and Related Dementias.

First, the HEADS R&D Core engages promising early-stage researchers at Johns Hopkins University and external institutions through summer workshops to build research capacity and nurture a new generation of scientists conducting innovative, rigorous economic and health services research addressing population and care systems issues related to ADRD. Second, the HEADS R&D Core promotes awareness and extends its reach through multiple modes of communication by developing a dissemination and translation infrastructure involving print- and web-based approaches, social media, webinars, and traditional methods of research dissemination, such as policy briefs and peer-review publication. Third, the HEADS R&D Core establishes a strategic bi-directional pipeline to facilitate developing, disseminating, and translating HEADS Center research and research resources through engaging a translation advisory panel of external leaders with diverse perspectives in ADRD-related policy, advocacy, and health care delivery.

Cross-Program Synergies that Facilitate the Research-to-Policy and Practice Pipeline

The Johns Hopkins University provides an especially rich and vibrant training environment for applied policy and research related to aging populations. The diversity and number of investigators at our institution who are engaged in a wide range of social and behavioral science, health informatics and data science, and clinically oriented research that is relevant to addressing population-based and care system challenges is unique and a key element of our success. Both the T32 and HEADS Center include faculty with expertise in a wide range of methodologies, including qualitative and mixed methods, primary and secondary data analysis, and observational and interventional study designs. A unique aspect of our geographic location is access to local, county, state, and federal aging translational and dissemination opportunities, including the broad array of national activities and organizations in Washington, DC, focused on health services and systems related to the care of older adults, such as the Centers for Medicare and Medicaid Services, which is based in Baltimore. Some illustrative examples of areas in which our institution has strong research-to-policy and research-to-practice pipelines that have been connected to trainees are included in Table 3.

Table 3.

Selected Translational Research to Policy and Practice Activities

Activity Research Policy and practice Trainee opportunities
Research to policy
Overarching ADRD Care T32 Co-Director Jennifer Wolff chaired NIA’s 2020 National Research Summit on Care, Services, and Supports for Persons with ADRD and their Caregivers. Core faculty Chanee Fabius serves as 2023 Summit Steering Committee Member.
MIND at Home identified notable unmet dementia care needs in Maryland (Black et al., 2013, 2019) which informed State Plan recommendations.		 Chanee Fabius serves on the Maryland Community Options Advisory Council for the State of Maryland.
HEADS Translation Advisory Panel Leader Quincy Samus chairs Maryland’s ADRD Council & 2022–2026 State Plan to Address ADRD; commissioner on the Lancet Commission on Dementia prevention, treatment and care.		 Pilot funding through the HEADS Center call for proposals each spring; summer workshops for early stage investigators.
Opportunities for trainees to present their findings to state boards/councils responsible for identifying state-level needs and making recommendations to improve care.
Pharmaceutical policy Junior investigator Michael DiStefano led a national survey to assess public opinions regarding aducanumab (DiStefano et al., 2022). HEADS Co-Director Dan Polsky convened the HEADS Summer 2021 Symposium on Aduhelm; Halima Amjad’s presentation led to subsequent NASEM talk. Opportunities to work with the Center for Drug Safety and Effectiveness.
Hearing policy Cochlear Center for Hearing and Public Health Director Frank Lin & colleagues demonstrate hearing loss as a risk factor for incident dementia (Lin et al., 2011) and services use (Reed at al., 2021; Willink et al., 2020), with the support of robust external funding. Cochlear Center for Hearing and Public Health contributes to national dialogue such as NASEM report on hearing health care for older adults, and policy expanding over-the counter access to hearing devices. With HEADS pilot funding T32 post-doctoral scholar Danielle Powell, AuD, PhD extends prior research (Powell, 2022; Powell et al., 2020; 2021; ; 2022) to ADRD-related treatment strategies.
Home-based care delivery T32 Core faculty Sarah Szanton demonstrated the CAPABLE model improves function and reduces costs in low-income older adults with disabilities (Szanton et al., 2021); Hospital at Home reduces hospital length of stay in diverse populations. Nearly half of older adults with dementia receive home health and/or other in-home services annually (Ornstein et al., 2022). CAPABLE and Independence at Home (Ornstein, Levine, & Leff, 2021) expand Medicare coverage for home-based care. The CMS Acute Hospital Care at Home (AHCaH) waiver was initiated during COVID-19 to incentivize implementation of Hospital at Home (HaH) care. T32 postdoctoral scholar Safiyyah Okoye, RN, PhD, led secondary analyses from CAPABLE (Okoye et al., 2021a; 2021b; Waldersen et al., 2017) building interests in housing as health. T32 practicum clinical experiences include home based primary care visits with Mariah Robertson, MD, MPH. T32 predoctoral scholar Tiffany Riser is pursuing doctoral work in the Veteran Administration’s home-based primary care program.
Research to practice, in care delivery
Care partner support HEADS Center Co-Director, Jennifer Wolff is PI on an R35 Leadership Award (R35AG072310) to promote engagement and support of ADRD care partners through consumer health information technology. The Coalition for Care Partners addresses challenges (Vick et al., 2018; Wolff et al., 2016, 2020) and opportunities (Wolff et al, 2018, 2021) of involving care partners in care delivery through the spread of strategies to support appropriate care partner uptake and use of the provider sponsored patient portal. R35AG072310 has supported training opportunities, including access to data, collaborations, and cross-institutional collaborations and mentored research opportunities at various levels. Former T32 postdoctoral fellow Julia Burgdorf is leading studies to engage care partners through information technology in home health care.
Dementia care coordination & support MIND at Home is an advanced care coordination program for community-living persons with dementia and memory disorders and their caregiver, delivered through an interdisciplinary, dementia capable collaborative team (Samus et al., 2014, 2017, 2018).
Research trials test the effects of infusing advance care planning in primary care (Dy et al., 2022) and MEMORI Corps, to engage and support trained volunteers in providing companionship and meaningful activities to persons living at home with dementia		 Quincy Samus serves national and international consensus panels on best practices in ADRD care coordination; MIND at Home has been adopted by Medicaid, Medicare-Medicaid, and D-SNP health plans as an operational pilot.
The Johns Hopkins’ Dementia Care Specialist training bundle derived from MIND at Home trains care managers and direct care staff to increase dementia care knowledge and skills.
Training curriculum and program infrastructure support community health workers (MIND at Home) and volunteers (MEMORI Corps) in ADRD care.		 With HEADS support T32 postdoctoral scholar Julia Burgdorf demonstrates cost impacts of ADRD in home health (Burgdorf, Amjad, & Bowles, 2022; Burgdorf, Sen, & Wolff, 2022). T32 postdoctoral scholar and audiologist Danielle Powell is focused on how to improve hearing health care for persons living with ADRD by engaging their care partners.
Geriatric workforce development and capacity building Several embedded pragmatic trials are completed (Bayliss et al., 2022) or underway (NCT#04819191) with the goal of testing scalable strategies to infuse best practices in geriatric care throughout mainstream care delivery. The Johns Hopkins Geriatric Workforce Enhancement Program integrates geriatric principles in community-based primary care. T32 predoctoral scholar, Jenni Reiff, OTA leads first-authored paper related to trial on which she was involved in data collection (Reiff et al., 2022).
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Notes: NIA = National Institute on Aging; ADRD = Alzheimer’s Disease and Related Dementias; HEADS = Hopkins’ Economics of Alzheimer’s Disease and Services; NASEM = National Academies of Sciences, Engineering, and Medicine; CAPABLE = Community Aging in Place—Advancing Better Living for Elders; COVID-19 = coronavirus disease 2019; PI = principal investigator; MIND = Mind at Home; CMS = Centers for Medicare and Medicaid Services; D-SNP = Dual Eligible Special Needs Plan; MEMORI = Making Engagement Meaningful through Organized Routine Interaction (MEMORI) Corps.

The MIND at Home dementia care coordination program developed at Johns Hopkins in multiple studies illustrates a successful example of the research-to-policy and research-to-practice pipelines that have involved several cross-disciplinary training opportunities. MIND at Home is an innovative, comprehensive care coordination model for people living at home with cognitive impairment that systematically assesses and addresses a broad range of dementia-related care needs that place people at risk for health disparities and other potentially avoidable adverse outcomes. Primary results demonstrate the acceptability and feasibility of delivering the program in real-world settings as well as promising effects on delayed transition from hospital to home, fewer unmet care needs, better quality of life, reduced acute health care utilization, and lower caregiver burden, at a potentially lower cost of health care (Amjad et al., 2018; Samus et al., 2017, 2018; Tanner et al., 2015; Willink et al., 2020). MIND at Home has been translated outside research and is operational in several health care settings, including managed-care health plans (Medicaid and Medicaid managed care plans such as Dual Eligible Special Need Plans [D-SNPs] and Medicare-Medicaid Plan [MMP]) and home health care. Currently, research is being conducted to adapt and test the model for delivery of complex care in primary care.

Beyond dissemination of MIND at Home in practice, data on the prevalence and risk factors for dementia-related unmet care needs derived from two of the Maryland-based MIND at Home studies (Black et al., 2013, 2019) directly informed the development of recommendations included in the Maryland State Plan to Address Alzheimer’s Disease and Related Dementias: 2022–2026 (https://health.maryland.gov/phpa/ccdpc/Documents/FINAL_ADRD%20STATE%20PLAN%202022-2026.pdf), which in turn has influenced state policy through providing evidence to support additional state infrastructure such as the Dementia Services Act of 2022 (https://mgaleg.maryland.gov/mgawebsite/Legislation/Details/hb0166?ys=2022RS). The development, evaluation, and dissemination of the MIND at Home dementia care coordination program has provided seminal research experience and training opportunities to pre doctoral and postdoctoral trainees, K-award recipients, and international visiting scientists over the past decade. These analyses have provided valuable insight into topics such as the relationship of the built home environment and function (Marquardt et al., 2011); disparities in dementia-related need, care, and burden (Antonsdottir et al., 2022; Hughes et al., 2014; Sloan et al., 2022); effects of the care coordination program on health care utilization for people with dementia and caregiver outcomes (Amjad et al., 2018; Lee et al., 2022; Tanner et al., 2015); and whether the MIND program is cost-effective (Willink et al., 2020).

Discussion

The benefits of new knowledge achieved through research will not reach full potential without being accessed, understood, and acted on by appropriate audiences, including the lay public, government and other policy makers, providers, payors, and the scientific community. Although major reforms have been undertaken to motivate shifts toward more comprehensive, coordinated, affordable, and person- and family-centered care, the current systems of financing and delivering care are often misaligned with the needs of older adults living with serious illness, such as those living with dementia, and do not well address the needs of family and other unpaid caregivers who provide the majority of assistance with daily activities. Within this context, there is an urgent need to invest in the research to policy and practice pipeline for dementia and aging training.

New knowledge achieved through research will not reach its full potential without being accessed, understood, and acted upon by appropriate audiences including the lay public, government and other policy makers, providers, payors, and the scientific community.

This contribution describes two new complementary initiatives at our institution that seek to build the field of scholars who are poised to bridge the research-to-policy and practice pipeline to facilitate the goal of translating benefits of the scientific enterprise throughout mainstream care. The two initiatives build community through facilitating interdisciplinary interactions and opportunities for scholars to gain real-world experience. Here we conclude by remarking on features of our initiatives that we believe are foundational to this work and that may prove helpful to other organizations seeking to build capacity of investigators trained to lead gerontologic and geriatric applied translational research and policy initiatives.

This contribution describes two new complementary initiatives at our institution that seek to build the field of scholars who are poised to bridge the research to policy and practice pipeline to facilitate the goal of translating benefits of the scientific enterprise throughout mainstream care.

Mentorship

The leadership of both initiatives are committed to building the next generation of applied policy researchers and recognize the importance of providing learners with structured guidance and support. Both programs deliberately match individuals with mentoring teams of faculty at varied career stages, and in so doing, seek to build mentoring skills and experience with junior faculty across our community. Trainees and faculty represent a range of disciplines across multiple schools; this interdisciplinary approach in the training community is vital for advancing the field.

Communications Training and Support

Both new initiatives strongly emphasize written and oral communication skills to effectively disseminate new knowledge beyond the scientific community to policy makers as well as the lay public. Both initiatives have dedicated institutional resources to support external communications, such as social media and institutional websites to facilitate ready availability of research findings. Through internal communications, we can facilitate greater awareness about seminar series, working groups, ongoing research projects, mentored research opportunities, and the availability of pilot funding and resources.

Commitment to Community

There is a growing appreciation that translational research is predicated on team science with strong partnerships bridging disciplines and settings. Building and sustaining deep, trusting internal and external relationships within and across programs, within the institution, and with nonacademic partners that include providers, insurers, advocates, community-based organizations, and policy groups is a priority for undertaking high-quality and impactful research and presents wide-ranging opportunities for trainees.

Training Resources

Both initiatives recognize the importance of disseminating information about and providing seed money for trainees to attend academic and nonacademic meetings and engage in professional development activities. Both initiatives seek to make a wide range of data available to trainees, as well as access to skilled experts in how to use it, with the HEADS Remote Data Enclave serving as a hub for this effort.

We look forward to continuing to advance these initiatives through capacity-building to make substantial impacts on the field that bridge aging-related research, policy, and practice.

Contributor Information

Jennifer L Wolff, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Danielle Peereboom, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Nadia Hay, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Daniel Polsky, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Katherine A Ornstein, Center for Equity in Aging, Johns Hopkins School of Nursing, Baltimore, Maryland, USA.

Cynthia M Boyd, Division of Geriatric Medicine and Gerontology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.

Quincy M Samus, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.

Funding

This work was supported by the National Institute on Aging, National Institutes of Health [grant numbers T32AG066576, P30AG066587]. JLW is also supported by 5R35AG072310 and CMB is supported by 1K24AG056578.

Conflict of Interest

None declared.

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