Comprehensive Dementia Care Models: State of the Science and Future Directions
Abstract
The rising prevalence of Alzheimer's disease and Alzheimer's disease–related dementias has led to renewed public discourse and policy changes in response to the care needs of persons living with dementia and their care partners. Comprehensive dementia care models are central to many recent policy initiatives, most notably the Centers for Medicare & Medicaid Services Guiding an Improved Dementia Experience model. Gerontological nursing research is uniquely positioned to design and lead research investigating the effectiveness of these initiatives, as well as the dissemination and scaling of existing comprehensive dementia care models. The current Annual State of the Science Review provides an overview of the current state of comprehensive dementia care models in the United States and relevant policies. Challenges and opportunities for nursing education, research, and implementation across the translational research continuum are also outlined. [Research in Gerontological Nursing, 18(1), 7–16.]
Introduction
Approximately 7 million older adults are living with Alzheimer's disease and Alzheimer's disease–related dementias (AD/ADRD) in the United States (Alzheimer's Association, 2024). Continued growth and adoption of comprehensive dementia care models represent a necessary shift in health services for persons living with dementia (PLWD) and their care partners. This shift reflects progress in transitioning research evidence toward dissemination and implementation (March et al., 2023). Broadly, comprehensive dementia care models are approaches to practice and health care and service delivery designed to meet the care needs of PLWD. These models of care vary in the modality of support and populations served but consistently emphasize proactive responses to care needs and support for family care partners (Possin et al., 2019; Super et al., 2023; Toles et al., 2022).
Advancing interventions that improve diagnosis and the diagnostic experience, as well as care planning and management of the symptoms of dementia, are an internationally recognized public health priority (Livingston et al., 2024). Comprehensive dementia care models constitute one approach to facilitating these advances and are identified as a priority area for research implementation in the National Plan to Address Alzheimer's Disease (National Alzheimer's Project Act, 2023). Recently published AD/ADRD research implementation milestones identify research priorities focused on comprehensive dementia care models with the objective of quality of life and reducing care partner burden (National Institute on Aging [NIA], 2024). Progress toward these milestones includes research addressing comprehensiveness and implementation factors that may affect adoption, such as cost, payers, dosage, and staffing (Jennings et al., 2019; Lees Haggerty et al., 2020; Reuben et al., 2019).
Health policies that guide reimbursement and development of Medicare-supported programs play a significant role in incentivizing the adoption of specific models of care through payment models and regulating care quality standards at local, state, and federal levels. The intersection between comprehensive dementia care models and health policy for stimulating the adoption of these models in real-world settings is evolving and gerontological nursing is poised to lead rigorous research evaluations of models as they diffuse through diverse practice environments. The current Annual State of the Science Review provides an overview of comprehensive dementia care models, challenges, and intersecting policies related to adoption of models of care and opportunities for nursing education, research, and implementation.
Comprehensive Dementia Care Models
Core elements of comprehensive dementia care include continuous monitoring and assessment, ongoing care plans, psychosocial interventions, self-management, medication management, treatment of related conditions, care coordination, and care partner support (Table 1) (Lees Haggerty et al., 2020). The societal impacts of dementia are expansive and require specialized support from care partners who also manage legal, cultural, and financial aspects of care (Super et al., 2023); accordingly, dementia care models extend beyond disease management and monitoring of progression. The complexity of dementia care necessitates comprehensive and coordinated models that can attenuate well-documented care fragmentation while offering comprehensive care, including families, friends, and community or faith-based members who may be caring for PLWD (Epps et al., 2024; Kern et al., 2024).
| Continuous Monitoring and Assessment |
| Regular and continuous monitoring of cognitive, functional, behavioral, and psychological needs |
| Assessments of care partner stress |
| Ongoing Care Plans |
| Regularly assessed care plans, including advance care planning, preferences surrounding where PLWD would like to reside and receive care, and end-of-life care preferences |
| Psychosocial interventions |
| Implementing interventions to prevent and reduce symptoms and challenges of dementia and care partner stress |
| Self-Management |
| Tools and strategies to strengthen the skills of PLWD and their care partners in managing illness through person-centered goals |
| Medication Management |
| Using evidence-based strategies for deprescribing medications and reducing adverse effects |
| Improved medication adherence |
| Education about medication management |
| Treatment of Related Conditions |
| Prevention, treatment, and management of comorbid conditions |
| Addressing depression, falls, and delirium |
| Care Coordination |
| Centering the coordination of health care services across the care continuum (e.g., hospital, home, primary care, ambulatory care, community-based care settings) |
| Care Partner Support |
| Identification of care partners |
| Incorporating care partners in care decisions, planning, and evaluation |
| Culturally sensitive caregiving support and guidance |
Existing comprehensive dementia care models provide services and reimbursements to health care providers for dementia care, including medical management and care coordination. These models can lead to higher-quality continuous care with reductions in care partner burden (Lees Haggerty et al., 2020; Reuben et al., 2023; Super et al., 2023). Although current programs offer reimbursement for skilled nursing care or rehabilitative services, improvements in payment policies may include establishing payments for services to care partners, using population-based methods to stratify risk for dementia, and developing broader metrics for payments and coverage for dementia care in general (Lees Haggerty et al., 2020).
Comprehensive dementia care models are often pragmatically implemented and require partnership, buy-in, and co-design methodologies essential for developing culturally tailored dementia care approaches (Ramirez et al., 2023). Community-based participatory research and partnerships with health care systems using established frameworks ensure that research participants, including PLWD, care partners, family members, health care professionals, and community partners, have direct input into the research generation and translation process (Epps et al., 2024; Gabbard et al., 2023; Mullins et al., 2012).
Examples of Comprehensive Dementia Care Models
Several comprehensive dementia care models facilitate high-quality care with benefits for patients and partners, including cost savings, improved medication management, care partner support, and continuity of care (Reuben et al., 2023; Super et al., 2023) (Table 2). Evidence from these and other programs has been foundational for recent initiatives in advancing the efforts to establish comprehensive dementia care.
| Model | Team Members | Description |
|---|---|---|
| Care Ecosystem | Care team navigators, APN, social worker, pharmacist | Telephonic and online care management to improve quality of life for PLWD and reduce ED visits. Adapted into the Living With Dementia Program, it supports care partners, enhancing their self-efficacy. |
| Living With Dementia Program | Care partners, health care team members | Developed from the Care Ecosystem model, this program demonstrates an association between care partner support and greater self-efficacy in caregiving. |
| Maximizing Independence at Home (MIND at Home®) | Memory care coordinators, RN, geriatric psychiatrist | Home-based care coordination model that supports PLWD and their care partners through personalized assessments, safety monitoring, and access to resources. It focuses on reducing care partner burden and improving satisfaction, showing positive outcomes across cognitive, emotional, and social domains. |
| Aging Brain Care Program | RN, care coordinator assistants, social workers, medical directors | Comprehensive 18-month program aimed at improving care and quality of life for PLWD and addressing depression. Includes home visits for cognitive assessments and personalized care plans, improving symptoms of dementia and depression while engaging care partners for ongoing support. |
| Benjamin Rose Institute Care Consultation | Community workers, social workers, RNs, marriage and family therapists | Specialized program offering care navigation and tailored resources for PLWD and their care partners. Focuses on improved well-being and reduced care partner stress through comprehensive approaches and personalized coaching. It has shown improvements in reducing isolation and enhancing support use for care partners and PLWD. |
| Integrated Memory Care Clinic (IMCC) | APRNs, physicians, geriatric nurses, social workers | Patient-centered medical home focused oncomprehensive and coordinated primary care for PLWD. Reduced hospitalizations and increased care partner satisfaction, with minor improvements in neuropsychiatric symptoms and care partner metrics. |
| Program of All-Inclusive Care for the Elderly (PACE) | Physicians, nurses, social workers, therapists | PACE provides holistic, person-centered support for PLWD through an interdisciplinary team that creates individualized care plans. It assists with daily activities, offers training for family care partners, and includes transportation services, home health care, prescription drugs, and social services, ensuring comprehensive support for maintaining independence. |
The Care Ecosystem model delivers telephonic and online care management through trained care team navigators and health care team members, including an advanced practice nurse, social worker, and pharmacist. This model improves the quality of life of PLWD and reduces emergency department (ED) visits (Possin et al., 2019). Adapted from this model, the Living With Dementia program in geriatric primary care demonstrates an association between a care partner support program and greater care partner self-efficacy (Schara et al., 2022).
The Maximizing Independence at Home (MIND at Home®) program is a home-based care coordination model that supports the needs of PLWD and their care partners at home (Samus et al., 2018; Samus et al., 2014). Trained non-clinical community workers (i.e., Memory Care Coordinators), a RN, and a geriatric psychiatrist deliver this program in the home setting. The intervention components include care needs assessments, care planning, safety monitoring, and assessment. Care partner burden and overall satisfaction with care are also evaluated. Care coordination centers on personalized support, including check-ins by care coordinators, assistance accessing health care and community resources, dementia management strategies, and customized care plans. The MIND at Home® Program shows positive outcomes across cognitive, emotional, and social domains for PLWD and their care partners (Samus et al., 2018; Samus et al., 2014).
The Aging Brain Care Program is a comprehensive dementia care program that focuses on improving collaborative dementia and depression care and quality of life of PLWD and their care partners (LaMantia et al., 2015). The team includes a RN, care coordinator assistants, administrators, social workers, and medical directors. The team visits the PLWD's home or preferred setting to complete cognitive assessment and measurement of functional, behavioral, and psychological symptoms. The team develops an individualized care plan, including pharmacological and psychosocial protocols. Care partners engage with the care coordinator assistants, who can connect them with the team if changes arise, such as hospitalization or when follow up is needed. The program has shown improvements in dementia and depression symptoms and greater care partner support (LaMantia et al., 2015).
The Benjamin Rose Institute Care Consultation is a specialized program that supports and offers care navigation for PLWD and care partners. Partners in Dementia Care is an outgrowth of this program. This model seeks to improve quality of life for older adults and their families by providing tailored resources and solutions. Delivered by community workers, social workers, RNs, and marriage and family therapists, the model results in increased well-being and satisfaction with care, and reduced stress for family members. Partners in Dementia Care involves personalized coaching via telephone, email, and mail. A study that followed 148 care partners and 84 PLWD over 12 months showed that implementation of the model resulted in reduced isolation and unmet needs for PLWD and their care partners, particularly in challenging caregiving situations (Bass et al., 2019). PLWD reported less embarrassment about memory issues and increased support utilization (Bass et al., 2019; Bass et al., 2013).
The Integrated Memory Care Clinic (IMCC) is a patient-centered medical home for PLWD. This model is led by advanced practice RNs (APRNs) with support from a multidisciplinary team, including physicians, geriatric nurses, and social workers (Clevenger et al., 2018). This model emphasizes comprehensive, coordinated primary care while taking a palliative-oriented approach to reduce the burden of dementia. Clevenger et al. (2018) evaluated the first year of IMCC operations with 139 PLWD–care partner dyads, predominantly diagnosed with Alzheimer's disease. Hospitalizations decreased during this period, and care partner satisfaction increased.
The Program of All-Inclusive Care for the Elderly (PACE) supports PLWD through a holistic and person-centered approach that can be obtained through Medicare (Arku et al., 2022; Williams & Chandrasekaran, 2023). PACE features an interdisciplinary team of physicians, nurses, social workers, and therapists who collaborate to create individualized care plans tailored to the specific needs of participants, many of whom are PLWD in long-term care. Services are designed to support cognitive and physical abilities, incorporating memory care programs and cognitive therapies to enhance engagement and well-being. In addition, PACE assists with daily activities, such as personal care, meal preparation, and medication management, allowing individuals to maintain independence. PACE also offers resources and training for care partners, transportation, providing strategies for managing dementia care, and respite services.
In July 2024, the Centers for Medicare & Medicaid Services (CMS; 2024a) Innovation Center introduced the Guiding an Improved Dementia Experience (GUIDE) Model (Kaufman & Grant, 2024), an 8-year national initiative that uses an alternate payment model to improve quality-of-life outcomes and reduce disparities for PLWD and their family care partners. The GUIDE Model operationalizes assessments and planning, monitoring, and support for care partners by providing access to a telephonic support line and care navigators who work with clinical services and community-based organizations (CMS, 2024a). The model is reported as highly desired by patients and care partners and increasingly more so for those who wish to avoid long-term care for severe cognitive impairment and limited mobility (Ritchie & Leff, 2022). The model also offers care partner training education, as well as respite. By fostering a more integrated approach to care, the GUIDE Model aims to reduce hospitalizations, improve patient satisfaction, and ultimately enhance the overall quality of life for PLWD with complex care needs.
Challenges in Comprehensive Dementia Care Models
Regardless of model, there are challenges to implementation. The level, focus, and types of training for clinicians and care partners impact the successful delivery of dementia care models. Clinicians (e.g., nurses, physicians, social workers) may not be trained in dementia-specific care but offer general care coordination for all advanced illnesses. Care partners are not routinely provided training despite the potential benefit of improving skills and confidence (Pleasant et al., 2020; Sefcik et al., 2022).
There is heterogeneity in available dementia care models. In large health systems, established interprofessional dementia care centers provide in-person and round-the-clock access to care providers for treatment, medication management, communication with primary care providers, and tailored care planning. Alternatively, such services may be unavailable in dementia care settings, such as assisted living, nursing homes, and home health care. Some may be offered virtually, in rural settings where resources are limited. Virtual telehealth or telephonic assessments can foster communication with care partners when in-person visits are inconvenient or inaccessible.
Evidence generation and translation of dementia care models takes considerable effort and time as research and implementation may not constantly evolve as rapidly as clinical care. Translating and implementing dementia care interventions, which are needed to inform optimal dementia care models, depends on developing dementia care science as a non-linear process (Gaugler et al., 2021). Varied methodologies and flexibility in delivery are required if investigators and health system leaders alike are to meet the needs of PLWD in a complex health care system (Gaugler et al., 2021).
Intersecting Policies and Implementation of Dementia Care Models
Successful implementation of dementia care models will require policy initiatives that promote health care system commitment and long-term sustainability and implementation. Four areas where policy initiatives could improve implementation efforts are those that enhance the long-term care workforce, reimbursements and disincentives, family caregiving, and care planning.
Long-Term Care Workforce
As long-term care's prominence in dementia management grows, innovation and translation must include how long-term care and the direct care workforce factor into developing and sustaining high-quality dementia care models (Weiss et al., 2020). Staffing standards in most long-term care facilities, such as nursing homes, remain inadequate despite ample evidence that improved staffing is needed for safe care (Falvey et al., 2019; Harrington et al., 2020). Recent policy has begun to address this critical problem by establishing minimum staffing standards that support nursing home reform nationwide and improve safety and quality (CMS, 2024b; Mukamel et al., 2023).
The National Academies of Sciences, Engineering, and Medicine (2022) report the quality of care in nursing homes prioritized the delivery of person-centered interdisciplinary team-based care that aligns with residents' values and preferences and addresses medical, behavioral, and social care needs. Improved staffing and enhanced nursing leadership may equate to better adoption of dementia care models. Optimizing nursing in this setting would present an opportunity for greater scalability, as more available and trained nurses can potentially increase the impact of dementia care model implementation, ultimately improving care quality (CMS, 2024b; Harrington et al., 2016).
Reimbursements and Disincentives
Implementation of dementia care models requires policies that incentivize participation of providers and health care systems. Medicaid reimbursements drive nursing home care quality. Consistent underfunding and low reimbursement are associated with lower quality in nursing homes, widening inequities in care, and impacting staffing, especially in areas of neighborhood deprivation (Falvey et al., 2023; Werner & Konetzka, 2022). Dementia care models implemented in nursing homes can only be successfully translated if reimbursement policies meet the growing need for higher quality and safer care.
Family Caregiving
Some states are beginning to implement policies that support dementia caregiving (National Academy for State Health Policy, 2022). For example, New York State recently implemented care partner training videos available based on survey feedback from working care partners. Connecticut expanded support for dementia family care partners through assistive technology and respite care, including care partner training. Utah trained “dementia care trainers” to support dementia care expansion in rural areas using grant funds. California has an extensive state-funded program called the Caregiver Resource System that provides education, respite, and counseling for care partners. These exemplary programs are needed to support dementia care models and can work to increase their impact.
Care Planning
Advanced care planning policies, such as state Physician Orders for Life-Sustaining Treatment (POLST) programs ( https://polst.org/), are helpful for decision-making at the end of life (Umberfield et al., 2024). The presence of medical orders that reflect prior stated wishes of individuals can guide families in real-time decision-making about preferred place of end-of-life care, antibiotic use, or hospitalization (Fu et al., 2021).
Similarly, at the end of life, hospice has been shown to lead to favorable outcomes for PLWD and their care partners, including increased support and improved care quality (Harrison et al., 2022). However, eligibility criteria are not tailored for dementia illness, leading to missed opportunities for hospice enrollment (Wallace & Wladkowski, 2024). Extended lengths of stay often lead to live discharge, a traumatic outcome for PLWD and their care partners (Wladkowski, Hunt, et al., 2024; Wladkowski, Wallace, et al., 2024). Policy reform within the Medicare Hospice Benefit is needed to meet the end-of-life needs of PLWD through higher quality, flexibility in eligibility criteria, and a live discharge protocol to mitigate adverse effects (Wallace & Wladkowski, 2024).
Opportunities for Nursing and Research
Implementation and Evaluation
Nursing has an opportunity to advance research efforts in comprehensive dementia care and practice (Gibson et al., 2021). As integral members of the dementia care team, nurse scientists are ideally poised to appraise the readiness of models for implementation in real-world clinical care using criteria established by pragmatic clinical trials (Baier et al., 2019). Nurses also have an opportunity to offer their expertise in long-term care and dementia care in standardizing measures for quality improvement. These efforts require leveraging administrative datasets for policy analyses to enact meaningful systemic change for dementia care.
Nurses can lead and conduct longitudinal and prospective interventional studies, which are needed to understand how to integrate key partners (e.g., PLWD, care partners, priority communities) in research involving dementia care models. Centering health equity research design principles to advance equitable dementia care for minoritized and marginalized PLWD and persons living in low-resourced and socioeconomically deprived environments is a critical priority.
By leveraging the strengths of available dementia care models (e.g., reduction of unwanted ED visits, days in the hospital, fragmented care), evidence translation and sustainability in dementia care models can be enhanced (Super et al., 2023). Regular appraisal of evidence with translation and adoption of approaches and targeted reviews of drawbacks should be analyzed carefully to avoid unhelpful and wasteful replication. For example, given the CMS GUIDE Model's nascency, future evaluation of outcomes and effects of this model on PLWD and care partners should be completed to understand successful strategies for future modifications (CMS, 2024a).
Participation and Engagement of Care Recipients and Care Partners in Research
Participation and engagement of care recipients in the innovation of dementia care models should be a core component of research endeavors (Frank et al., 2021). When PLWD are included in research, in the design or participa-tory phase, the potential impact can be far more significant than relying solely on a proxy report (NIA IMPACT Collaboratory, 2024). PLWD and care partners should have a leading voice in determining health-related goals that can establish greater precision and individualized care. Their experiences and views of managing dementia and caregiving can inform intervention development and increase the utility and identification of patient- and care partner– reported outcomes (Frank et al., 2021).
Nursing and Workforce Education and Research
Most nurses and health care professionals caring for PLWD need training in geriatrics and gerontological nursing in their pre-licensure programs and in the workforce. Research on the effectiveness of dementia care education and training can guide future training efforts by addressing gaps and identifying areas of improvement. Current strategies can potentially advance educational preparation for effectively delivering dementia care models.
The new American Association of Colleges of Nursing (2021) Essentials: Core Competencies for Professional Nursing Education include competencies for system-based practice, such as nurses' ability to respond to and lead within complex health care systems so that safe, equitable, and quality care can be delivered to diverse populations. For example, building on programs, such as Aliviado Dementia Care that seeks to improve education and preparedness of clinicians for dementia-specific hospice and home care, can be used as a guide for future training efforts (Lin et al., 2022; Schneider et al., 2020). Gerontological nursing requires renewed training in health equity to assess and understand the inequalities and inequities affecting older adults (Moss et al., 2022). Training may focus on helping nurses gain proficiency in research, as they may be called on to engage in co-designed intervention research, which has potential to result in more responsive and inclusive dementia care (Goh et al., 2022).
Conclusion
As the health care system moves toward long-term implementation of comprehensive dementia care, optimizing care models and fostering sustainability are urgent priorities. Scaling successful models of comprehensive dementia care requires substantial investment and policy initiatives as they are notable for their benefits, including care partner support and care coordination. Ultimately, ongoing efforts to maximize the impact of dementia care models are needed to realize optimal and widely scaled, policy-supported care for all PLWD and their families in the United States.
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