Dementia care navigation: Building toward a common definition, key principles, and outcomes.

INTRODUCTION: As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient-, provider-, and systems-level barriers. Due to its high incidence, duration, and medical-social complexity, dementia is an ideal candidate for a patient-centric health care delivery model such as care navigation. METHODS: The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to identify evidence-based guidelines. RESULTS: Recognizing the unique and challenging needs of persons living with dementia and their care partners, several U.S. dementia care navigation programs have been developed and assessed in recent years. Collectively these programs demonstrate that persons living with dementia and their care partners benefit from dementia care navigation. Improved care system outcomes for the person living with dementia include reduced emergency department visits, lower hospital readmissions, fewer days hospitalized, and shorter delays in long-term care placement. Well-being is also increased, as there is decreased depression, illness, strain, embarrassment, and behavioral symptoms and increased self-reported quality of life. For care partners, dementia navigation resulted in decreased depression, burden, and unmet needs. DISCUSSION: This article presents principles of dementia care navigation to inform existing and emerging dementia care navigation programs. Highlights: Several U.S. dementia care navigation programs have demonstrated outcomes for persons living with dementia, care partners, and health systems.The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to create a shared definition and identify evidence-based guidelines or principles.These outlined principles of dementia care navigation can inform existing and emerging dementia care navigation programs.

Chronic disease management: why dementia care is different.

With the rise in the population of older adults, the number of individuals living with chronic diseases that need management will increase dramatically. Successful programs have been developed for chronic conditions (eg, heart failure, diabetes, asthma, chronic obstructive pulmonary disease) that use principles of self-management, monitoring, and care coordination. However, because of the effects of dementia on the mind including behavioral complications, the progressive loss of capacity for affected individuals to participate in care or decision-making, the devastating effects on care partners, and the scope of disease management beyond medical issues, the management of dementia is different and demands different approaches. The success of dementia management will depend upon how well the care provided is able to maximize the function, independence, and dignity of the individual living with dementia while minimizing care partner strain and burnout.

Dissemination of a successful dementia care program: Lessons to facilitate spread of innovations.

BACKGROUND: Despite the effectiveness of innovations to improve the care of persons with dementia, there has been limited diffusion of these into widespread clinical practice. We aimed to identify common barriers and address them directly in the initial phase of dissemination of a successful dementia care program. METHODS: Description of and early experience with a dissemination strategy of the UCLA Alzheimer's and Dementia Care Program to health care systems nationwide. We measured site-identified goals for the program and indicators of success, number of adopting sites, and participants in their programs. RESULTS: From January 2019 to December 2021, 80 sites expressed interest in adopting the program, 14 (18%) sites adopted it, and 10 of these sites have begun caring for patients. Another 4 sites have implemented the program as part of a randomized clinical trial. To date, over 1690 persons living with dementia and their caregivers have received Alzheimer's and Dementia Care (ADC) care at 14 adopting sites. Key lessons from the early dissemination efforts include the importance of identifying a strong product champion at the adopting site, creating a business case for adoption, training of clinical staff and adapting the model to fit local cultures and workflow, as well as recognizing the likely long length of time needed for the decision to adopt and implementation process. CONCLUSIONS: Despite many obstacles to dissemination, with local champions and technical assistance, successful innovations in dementia care can be implemented in diverse health systems. The ability to adopt sites to bring the program to full scale and achieve comparable outcomes to the original program remains to be determined.

Dissemination of a successful dementia care program: Lessons from early adopters.

BACKGROUND: Evidence-based models for providing effective and comprehensive care for Alzheimer's disease and related dementias exist but have yet to be successfully implemented at scale. The Alzheimer's and Dementia Care Program (ADC Program) is an effective comprehensive dementia care model that is being disseminated across the United States. This qualitative study examines barriers and facilitators to implementing the model among early adopting sites. METHODS: This study included semi-structured interviews with a total of 21 clinical site leaders and Dementia Care Specialists from a total of 11 sites across the US. Interviews were audio recorded, transcribed, and coded using Dedoose qualitative analysis software. Coding scheme development and data interpretation were informed by Rogers' Diffusion of Innovations framework. RESULTS: Key themes are organized in line with Rogers' framework. These include: the innovation-decision process, implementation and characteristics of the innovation, and sustainability. CONCLUSIONS: Across the three overarching themes presented in this manuscript, the importance of engagement from site leaders, the multifaceted nature of the dementia care specialist role, and the value of technical assistance from qualified experts are apparent. However, for this work to continue to be successful, there needs to be more appropriate payment to cover needed services and a mechanism for supporting comprehensive dementia care over time.

Overwhelmed: a Dementia Caregiver Vital Sign.

BACKGROUND: The emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program. OBJECTIVE: To examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes. DESIGN: Longitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia. CONCLUSIONS: A single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.

Caregiver outcomes of a dementia care program.

The University of California, Los Angeles Alzheimer's and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs' behavioral and depressive symptoms improved. In addition, at one-year, overall caregiver depression, strain, and distress related to behavioral symptoms also improved. However, not all dyads enrolled in the ADC program showed improvement in these outcomes. We conducted a mixed qualitative-quantitative study to explore why some participants did not benefit and what could be changed in this and other similar dementia management programs to increase the percentage who benefit. Semi-structured interviews (N=12) or surveys (N=41) were completed with 53 caregivers by telephone, mail and online. Seven areas for potential program improvement were identified from the first 12 interviews. These included: recommendations that did not match caregivers' perceived care needs, barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, behavioral recommendations that the caregiver felt did not work, and poor rapport of the dementia expert with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers (85%) reported that the program was very beneficial or extremely beneficial. Respondents identified the close, longitudinal relationship and access to a dementia care expert as particularly beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program.

Recommendations to Improve Payment Policies for Comprehensive Dementia Care.

Access to comprehensive dementia care is limited. Recent changes in billing for professional services, including new physician fee schedule codes, encourage clinicians to provide new services; however, current reimbursement does not cover costs for all needed elements of dementia care. The Payment Model for Comprehensive Dementia Care Conference convened more than 50 national experts from diverse perspectives to review promising strategies for payment reform including ways to accelerate their adoption. Recommendations for reform included payments for services to family caregivers; new research to determine success metrics; education for consumers, providers, and policymakers; and advancing a population health model approach to tier coverage based on risk and need within a health system.

D-CARE: The Dementia Care Study: Design of a Pragmatic Trial of the Effectiveness and Cost Effectiveness of Health System-Based Versus Community-Based Dementia Care Versus Usual Dementia Care.

BACKGROUND/OBJECTIVES: Although several approaches have been developed to provide comprehensive care for persons living with dementia (PWD) and their family or friend caregivers, the relative effectiveness and cost effectiveness of community-based dementia care (CBDC) versus health system-based dementia care (CBDC) and the effectiveness of both approaches compared with usual care (UC) are unknown. DESIGN: Pragmatic randomized three-arm superiority trial. The unit of randomization is the PWD/caregiver dyad. SETTING: Four clinical trial sites (CTSs) based in academic and clinical health systems. PARTICIPANTS: A total of 2,150 English- or Spanish-speaking PWD who are not receiving hospice or residing in a nursing home and their caregivers. INTERVENTIONS: Eighteen months of (1) HSDC provided by a nurse practitioner or physician's assistant dementia care specialist who works within the health system, or (2) CBDC provided by a social worker or nurse care consultant who works at a community-based organization, or (3) UC with as needed referral to the Alzheimer's Association Helpline. MEASUREMENTS: Primary outcomes: PWD behavioral symptoms and caregiver distress as measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity and Modified Caregiver Strain Index scales. SECONDARY OUTCOMES: NPI-Q Distress, caregiver unmet needs and confidence, and caregiver depressive symptoms. Tertiary outcomes: PWD long-term nursing home placement rates, caregiver-reported PWD functional status, cognition, goal attainment, "time spent at home," Dementia Burden Scale-Caregiver, a composite measure of clinical benefit, Quality of Life of persons with dementia, Positive Aspects of Caregiving, and cost effectiveness using intervention costs and Medicare claims. RESULTS: The results will be reported in the spring of 2024. CONCLUSION: D-CARE will address whether emphasis on clinical support and tighter integration with other medical services has greater benefit than emphasis on social support that is tied more closely to community resources. It will also assess the effectiveness of both interventions compared with UC and will evaluate the cost effectiveness of each intervention.

Unmet needs of caregivers of individuals referred to a dementia care program.

OBJECTIVES: To characterize caregiver strain, depressive symptoms, and self-efficacy for managing dementia-related problems and the relationship between these and referring provider type. DESIGN: Cross-sectional observational cohort. SETTING: Urban academic medical center. PARTICIPANTS: Caregivers of community-dwelling adults with dementia referred to a dementia care management program. MEASUREMENTS: Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves; the Modified Caregiver Strain Index; the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress; and a nine-item caregiver self-efficacy scale developed for the study. RESULTS: Of 307 patient-caregiver dyads surveyed over a 1-year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed that the individual's provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of individuals referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for an individual with more-severe behavioral symptoms. CONCLUSION: Most caregivers perceived inadequate support from the individual's provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of individuals with dementia and their caregivers.

The University of California at Los Angeles Alzheimer's and Dementia Care program for comprehensive, coordinated, patient-centered care: preliminary data.

Dementia is a chronic disease that requires medical and social services to provide high-quality care and prevent complications. As a result of time constraints in practice, lack of systems-based approaches, and poor integration of community-based organizations (CBOs), the quality of care for dementia is poorer than that for other diseases that affect older persons. The University of California at Los Angeles (UCLA) Alzheimer's and Dementia Care (UCLA ADC) program partners with CBOs to provide comprehensive, coordinated, patient-centered care for individuals with Alzheimer's disease and other dementias. The goals of the program are to maximize function, independence, and dignity; minimize caregiver strain and burnout; and reduce unnecessary costs. The UCLA ADC program consists of five core components: recruitment and a dementia registry, structured needs assessments of individuals in the registry and their caregivers, creation and implementation of individualized dementia care plans based on needs assessments and input from the primary care physicians, monitoring and revising care plans as needed, and around-the-clock access for assistance and advice. The program uses a comanagement model with a nurse practitioner Dementia Care Manager working with primary care physicians and CBOs. Based on the first 150 individuals served, the most common recommendations in the initial care plans were referrals to support groups (73%) and Alzheimer's Association Safe Return (73%), caregiver training (45%), and medication adjustment (41%). The program will be evaluated on its ability to achieve the triple aim of better care for individuals, better health for populations, and lower costs.