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.
IMPORTANCE An estimated 4 to 5 million Americans have Alzheimer disease or another dementia. OBJECTIVE To determine the health care utilization and cost outcomes of a comprehensive dementia care program for Medicare fee-for-service beneficiaries. DESIGN, SETTING, AND PARTICIPANTS In this case-control study, we used a quasiexperimental design to compare health care utilization and costs for 1083 Medicare fee-for-service beneficiaries enrolled in the University of California Los Angeles Health System Alzheimer and Dementia Care program between July 1, 2012, and December 31, 2015, with those of 2166 similar patients with dementia not participating in the program. Patients in the comparison cohort were selected using the zip code of residence as a sampling frame and matched with propensity scores, which included demographic characteristics, comorbidities, and prior-year health care utilization. We used Medicare claims data to compare utilization and cost outcomes for the 2 groups. INTERVENTIONS Patients in the dementia care program were comanaged by nurse practitioners and physicians, and the program consisted of structured needs assessments of patients and their caregivers, creation and implementation of individualized dementia care plans with input from primary care physicians, monitoring and revising care plans, referral to community organizations for dementia-related services and support, and access to a clinician for assistance and advice 24 hours per day, 7 days per week. MAIN OUTCOMES AND MEASURES Admissions to long-term care facilities; average difference-indifferences per quarter over the 3-year intervention period for all-cause hospitalization, emergency department visits, 30-day hospital readmissions, and total Medicare Parts A and B costs of care. Program costs were included in the cost estimates. RESULTS Program participants (n = 382 men, n = 701 women; mean [SD] age, 82.10 [7.90] years; age range 54-101 years) were less likely to be admitted to a long-term care facility (hazard ratio, 0.60; 95% CI, 0.59-0.61) than those not participating in the dementia care program (n = 759 men, n = 1407 women; mean [SD] age, 82.42 [8.50] years; age range, 34-103 years). There were no differences between groups in terms of hospitalizations, emergency department visits, or 30-day readmissions.
OBJECTIVES: Although osteoporosis treatment can dramatically reduce fracture risk, rates of treatment after hip fracture remain low. In‐hospital initiation of recommended medications has improved outcomes in heart disease; hospitalization for hip fracture may represent a similar opportunity for improvement. The objective of this study was to examine rates of in‐hospital treatment with a combination of calcium and vitamin D (Cal+D) and antiresorptive or bone‐forming medications in patients hospitalized for hip fractures DESIGN: Observational cohort. SETTING: Three hundred eighteen hospitals in the United States. PARTICIPANTS: Fifty‐one thousand three hundred forty‐six patients aged 65 and older hospitalized for osteoporotic hip fracture. MEASUREMENTS: In‐hospital administration of Cal+D and antiresorptive or bone‐forming medications. RESULTS: Three thousand four hundred five patients (6.6%) received Cal+D anytime after a procedure to correct femoral fracture; 3,763 patients (7.3%) received antiresorptive or bone‐forming medications. Only 1,023 patients (2.0%) were prescribed ideal therapy, receiving Cal+D and an antiresorptive or bone‐forming medication. Treatment rates remained low across virtually all patient‐, provider‐, and hospital‐level characteristics. The strongest predictor of treatment with Cal+D was the receipt of an antiresorptive or bone‐forming medication (adjusted odds ratio=5.50, 95% confidence interval=4.84–6.25), but only 27.2% of patients who received these medications also received Cal+D. CONCLUSION: Rates of in‐hospital initiation of osteoporosis treatment for patients with hip fracture are low and may represent an opportunity to improve care.
Purpose Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. Methods We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Results Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Conclusions Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.
OBJECTIVES: To develop a process of goal-setting and measurement of goal attainment in a dementia care management program. DESIGN: Observational. SETTING: Dementia care management program in an urban academic medical center. PARTICIPANTS: Persons with dementia (N=101) and their caregivers; nurse practitioner dementia care managers (N=5). INTERVENTION: Specification of a personalized health goal and action plan and measurement of goal attainment using goal attainment scaling in a clinical care visit. MEASUREMENTS: Goal attainment at 6 and 12 months; focus groups of 5 dementia care managers. RESULTS: Eighty-four percent of participant goals were nonmedical, 47% were related to quality of life, and 29% were caregiver support goals. Eighty-eight percent of participants felt that the goal they set was meaningful and 74% that the goal-setting process captured something different from usual care, and 85% found the process helpful in planning for future care. At 6 months, 74% of dyads had achieved or exceeded their expected level of goal attainment. Dementia care managers felt that the goal-setting process improved their understanding of what was most important to the patient, helped set expectations about disease progression and care needs, and provided positive reinforcement when goals were accomplished and an opportunity for revision when goals were not met. CONCLUSION: Goal setting using goal attainment scaling can be incorporated into the care of persons with dementia to establish and attain person-centered goals. Research is needed to further develop personalized goal attainment as an outcome measure for dementia care.
Multiple studies have shown that quality of care for dementia in primary care is poor with physician adherence to dementia quality indicators (QIs) ranging from 18-42%. In response, the University of California, Los Angeles Health System created the UCLA Alzheimer’s and Dementia Care (ADC) Program, a quality improvement program that uses a co-management model with a nurse practitioner dementia care manager (DCM) working with primary care physicians and community-based organizations to provide comprehensive dementia care. Our objective was to measure the quality of dementia care provided by nurse practitioner DCMs using the Assessing Care of Vulnerable Elders (ACOVE-3) and Physician Consortium for Performance Improvement QIs. Participants included 797 community-dwelling adults with dementia referred to the UCLA ADC program over a two-year period. UCLA is an urban academic medical center with primarily fee-for-service reimbursement. We measured the percentage of recommended care received for 17 dementia QIs. The primary outcome was aggregate quality of care for the UCLA ADC cohort calculated as the total number of recommended care processes received divided by the total number of eligible quality indicators. Secondary outcomes included aggregate quality of care in three domains of dementia care: assessment and screening (7 QIs), treatment (6 QIs), and counseling (4 QIs). QIs were abstracted from DCM notes over a three-month period from date of initial assessment. Patients were eligible for 9,895 QIs, of which 92% were passed. Overall pass-rates among DCMs were similar (range 90% to 96%). All counseling and assessment QIs had pass-rates >80% with most exceeding 90%. Wider variation in adherence was found among QIs addressing treatments for dementia, which were triggered by patient-specific criteria, ranging from 27% for discontinuation of medications associated with mental status changes to 86% for discussion about acetylcholinesterase inhibitors. Comprehensive dementia care co-management with a nurse practitioner can result in very high quality of care for dementia, especially for assessment, screening and counseling. The effect on treatment QIs is more variable but higher than previous reports of physician-provided dementia care.
BACKGROUND/OBJECTIVES Although Alzheimer disease and other dementias are life limiting, only a minority of these patients or their proxy decision makers participate in advance care planning. We describe end‐of‐life care preferences and acute care and hospice use in the last 6 months of life for persons enrolled in a comprehensive dementia care management program. DESIGN Observational, retrospective cohort. SETTING Urban, academic medical center. PARTICIPANTS A total of 322 persons enrolled in dementia care management after July 1, 2012, who died before July 1, 2016. INTERVENTION Dementia care comanagement model using nurse practitioners partnered with primary care providers and community organizations to provide comprehensive dementia care, including advance care planning. MEASUREMENTS Advance care preferences, use of Physician Orders for Life Sustaining Treatment (POLST), hospice enrollment, and hospitalizations and emergency department (ED) visits in the last 6 months of life obtained from electronic health record data. RESULTS Nearly all decedents (99.7%, N = 321) had a goals‐of‐care conversation documented (median = 3 conversations; interquartile range = 2‐4 conversations), and 64% had advance care preferences recorded. Among those with recorded preferences, 88% indicated do not resuscitate, 48% limited medical interventions, and 35% chose comfort‐focused care. Most patients (89%) specified limited artificial nutrition, including withholding feeding tubes. Over half (54%) had no hospitalizations or ED visits in the last 6 months of life, and intensive care unit stays were rare (5% of decedents). Overall, 69% died on hospice. Decedents who had completed a POLST were more likely to die in hospice care (74% vs 62%; P = .03) and die at home (70% vs 59%; P = .04). CONCLUSIONS Enrollees in a comprehensive dementia care comanagement program had high engagement in advance care planning, high rates of hospice use, and low acute care utilization near the end of life. Wider implementation of such programs may improve end‐of‐life care for persons with dementia. J Am Geriatr Soc 67:443–448, 2019.
Alzheimer’s disease and other dementias are chronic, incurable diseases that require coordinated care that addresses the medical, behavioral, and social aspects of the disease. With funding from the Center for Medicare and Medicaid Innovation (the Innovation Center), we launched a dementia care program in which a nurse practitioner acting as a dementia care manager worked with primary care physicians to develop and implement a dementia care plan that offers training and support to caregivers, manages care transitions, and facilitates access to community-based services. Post-visit surveys showed high levels of caregiver satisfaction. As program enrollment grows, outcomes will be tracked based on the triple aim developed by the Institute for Healthcare Improvement and adopted by the Centers for Medicare and Medicaid Services: better care, better health, and lower cost and utilization. The program, if successful at achieving the triple aim, may serve as a national model for how dementia and other chronic diseases can be managed in partnership with primary care practices. The program may also inform policy and reimbursement decisions for the recently released transitional care management codes and the complex chronic care management codes to be released by Medicare in 2015.
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