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.
Dementia is a chronic disease that requires both medical and social services to provide high quality of 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 poor compared to other diseases that affect older persons. The UCLA Alzheimer’s and Dementia Care (UCLA ADC) program partners with CBOs to provide comprehensive, coordinated, patient-centered care for patients with Alzheimer’s disease and other dementias. The goals of the program are to maximize patient function, independence and dignity, minimize caregiver strain and burnout and reduce unnecessary costs. The UCLA ADC program consists of five key components: patient recruitment and a dementia registry, structured needs assessments of patients 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 access 24/7, 365 days a year for assistance and advice. The program uses a co-management model with a nurse practitioner Dementia Care Manager working with primary care physicians and CBOs. Based on the first 150 patients served, the most common recommendations in the initial care plans were referrals to support groups (73%), 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.
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.
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.
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