Using care navigation to address caregiver burden in dementia: A qualitative case study analysis.

INTRODUCTION: Many caregivers of people with dementia experience burden and resulting health effects due to the intensive nature of caregiving. Phone- and web-based care navigation is an innovative model of care that may be useful in addressing caregiver burden in dementia. METHODS: Qualitative methods (interviews, focus groups, and case study analysis) were used to identify care navigator approaches used to address caregiver burden in dementia as part of a dementia care navigation program. RESULTS: Care navigators targeted caregiver burden by focusing on strategies to reduce caregiver guilt and frustration, manage patient-related behavior, address caregiver depression, and improve the relationship between the caregiver and person with dementia. The case studies presented demonstrate the ways that care navigators identified patient and caregiver needs and tailored their approaches to meet the specific social, cultural, economic, and geographic contexts of the dyads with which they worked. DISCUSSION: Findings provide insights into strategies used to address caregiver burden through care navigation. Care navigators who speak the same language as the caregivers with whom they work and who have an in-depth understanding of the symptoms of different dementia syndromes may be particularly effective.

The Care Ecosystem: Promoting self-efficacy among dementia family caregivers.

OBJECTIVES: To illustrate specific psychosocial interventions aimed at improving self-efficacy among family caregivers enrolled in the Care Ecosystem, a model of navigated care designed to support persons with dementia and their primary caregivers. Enrolled family caregivers work with unlicensed care team navigators who are trained in dementia care and provide information, linkages to community resources, and emotional support by phone and email. METHOD: We conducted focus groups and interviews with the care team navigators to identify the approaches they used to target caregiver self-efficacy. We assessed mean self-efficacy scores in a sample of 780 family caregivers and selected three exemplary cases in which the caregivers had low self-efficacy scores at baseline with significantly higher scores after six months of participation in the Care Ecosystem intervention. RESULTS: Multiple psychosocial strategies were utilized by care team navigators working with patients with dementia and their family caregivers. Using thematic coding we identified three categories of Care Team Navigator intervention: emotional, informational, and instrumental support. These are consistent with a psychosocial approach to building self-efficacy. DISCUSSION: Self-efficacy represents a family caregiver's knowledge and preparedness in managing the challenges of care. Psychosocial support shows benefit in improving caregiver self-efficacy that in turn, may positively influence caregiver health and well-being. The findings in this manuscript demonstrate how a model of navigated care can positively impact self-efficacy among dementia family caregivers.

Dementia assessment and management in primary care settings: a survey of current provider practices in the United States.

BACKGROUND: Primary care providers (PCPs) are typically the first to screen and evaluate patients for neurocognitive disorders (NCDs), including mild cognitive impairment and dementia. However, data on PCP attitudes and evaluation and management practices are sparse. Our objective was to quantify perspectives and behaviors of PCPs and neurologists with respect to NCD evaluation and management. METHODS: A cross-sectional survey with 150 PCPs and 50 neurologists in the United States who evaluated more than 10 patients over age 55 per month. The 51-item survey assessed clinical practice characteristics, and confidence, perceived barriers, and typical practices when diagnosing and managing patients with NCDs. RESULTS: PCPs and neurologists reported similar confidence and approaches to general medical care and laboratory testing. Though over half of PCPs performed cognitive screening or referred patients for cognitive testing in over 50% of their patients, only 20% reported high confidence in interpreting results of cognitive tests. PCPs were more likely to order CT scans than MRIs, and only 14% of PCPs reported high confidence interpreting brain imaging findings, compared to 70% of specialists. Only 21% of PCPs were highly confident that they correctly recognized when a patient had an NCD, and only 13% were highly confident in making a specific NCD diagnosis (compared to 72 and 44% for neurologists, both p < 0.001). A quarter of all providers identified lack of familiarity with diagnostic criteria for NCD syndromes as a barrier to clinical practice. CONCLUSIONS: This study demonstrates how PCPs approach diagnosis and management of patients with NCDs, and identified areas for improvement in regards to cognitive testing and neuroimaging. This study also identified all providers' lack of familiarity with published diagnostic criteria for NCD syndromes. These findings may inform the development of new policies and interventions to help providers improve the efficacy of their decision processes and deliver better quality care to patients with NCDs.

Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial.

Importance: Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. Objective: To determine whether the Care Ecosystem is effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care. Design, Setting, and Participants: A single-blind, randomized clinical trial with a pragmatic design was conducted among PWDs and their caregivers. Each PWD-caregiver dyad was enrolled for 12 months between March 20, 2015, and February 28, 2017. Data were collected until March 5, 2018. Study interventions and assessments were administered over the telephone and internet by clinical and research teams in San Francisco, California, and Omaha, Nebraska. Of 2585 referred or volunteer PWD-caregiver dyads in California, Iowa, or Nebraska, 780 met eligibility criteria and were enrolled. A total of 512 PWD-caregiver dyads were randomized to receive care through the Care Ecosystem and 268 dyads to receive usual care. All eligible PWDs had a dementia diagnosis; were enrolled or eligible for enrollment in Medicare or Medicaid; and spoke English, Spanish, or Cantonese. Analyses were intention-to-treat. Intervention: Telephone-based collaborative dementia care was delivered by a trained care team navigator, who provided education, support and care coordination with a team of dementia specialists (advanced practice nurse, social worker, and pharmacist). Main Outcomes and Measures: Primary outcome measure: Quality of Life in Alzheimer's Disease based on caregiver's rating of 13 aspects of PWD's well-being (including physical health, energy level, mood, living situation, memory, relationships, and finances) on a 4-point scale (poor to excellent). Secondary outcomes: frequencies of PWDs' use of emergency department, hospitalization, and ambulance services; caregiver depression (score on 9-Item Patient Health Questionnaire; higher scores indicate more severe depression); and caregiver burden (score on 12-Item Zarit Burden Interview; higher scores indicate more severe caregiver burden). Results: The 780 PWDs (56.3% female; mean [SD] age, 78.1 [9.9] years) and 780 caregivers (70.9% female; mean [SD] age, 64.7 [12.0] years) lived in California (n = 452), Nebraska (n = 284), or Iowa (n = 44). Of 780 dyads, 655 were still active at 12 months, and 571 completed the 12-month survey. Compared with usual care, the Care Ecosystem improved PWD quality of life (B, 0.53; 95% CI, 0.25-1.30; P = .04), reduced emergency department visits (B, -0.14; 95% CI, -0.29 to -0.01; P = .04), and decreased caregiver depression (B, -1.14; 95% CI, -2.15 to -0.13; P = .03) and caregiver burden (B, -1.90; 95% CI, -3.89 to -0.08; P = .046). Conclusions and Relevance: Effective care management for dementia can be delivered from centralized hubs to supplement usual care and mitigate the growing societal and economic burdens of dementia. Trial Registration: ClinicalTrials.gov identifier: NCT02213458.

Variations in Costs of a Collaborative Care Model for Dementia.

OBJECTIVES: Care coordination programs can improve patient outcomes and decrease healthcare expenditures; however, implementation costs are poorly understood. We evaluate the direct costs of implementing a collaborative dementia care program. DESIGN: We applied a micro-costing analysis to calculate operational costs per-participant-month between March 2015 and May 2017. SETTING: The University of California, San Francisco (UCSF) and the University of Nebraska Medical Center (UNMC). PARTICIPANTS: Participants diagnosed with dementia, enrolled in Medicare or Medicaid, 45 years of age or older, residents of California, Nebraska or Iowa, and having a caregiver. The sample was 272 (UCSF) and 192 (UNMC) participants. INTERVENTION: A collaborative dementia care program provided by care team navigators (CTNs), advanced practice nurses, a social worker, and a pharmacist, focusing on caregiver support and education, medications, advance care planning, and behavior symptom management. MEASUREMENTS: We measured costs (personnel, supplies, equipment, and training costs) during three program periods, Start-up, Early Operations, and Continuing Operations, and estimated the effects of caseload variation on costs. RESULTS: Start-up and Early Operations costs were, respectively, $581 and $328 (California), and $501 and $219 (Nebraska) per-participant-month. Average costs decreased across phases to $241 (California) and $142 (Nebraska) per-participant-month during Continuing Operations. We estimated that costs would range between $75 (UNMC) and $92 (UCSF) per-participant-month with the highest projected caseloads (90). CONCLUSION: We found that CTN caseload is an important driver of service cost. We provide strategies for maximizing caseload without sacrificing quality of care. We also discuss current barriers to broad implementation that can inform new reimbursement policies. J Am Geriatr Soc 67:2628-2633, 2019.

The Role of Care Navigators Working with People with Dementia and Their Caregivers.

BACKGROUND: Care navigation is an approach to personalized care management and care coordination that can help overcome barriers to care. Care navigation has not been extensively studied in dementia, where health care workforce innovations are needed as a result of increasing disease prevalence and resulting costs to the health care system. OBJECTIVE: To identify facilitators and barriers to care navigation in dementia and to assess dementia caregiver satisfaction with care navigation. METHODS: Methods include qualitative research (interviews, focus groups, observations) with "Care Team Navigators" (CTNs) who were part of a dementia care navigation program, the Care Ecosystem, and a quantitative survey with caregivers about their experiences with CTNs. Transcripts were analyzed to identify themes within the data. RESULTS: CTNs identified the following facilitators to care navigation in dementia: working closely with caregivers; providing emotional support; tailoring education and resources; and coordinating with a clinical team around issues ranging from clinical questions to financial and legal decision-making. The barriers CTNS identified included burn-out, the progressive nature of the disease; coordinating with primary care providers; and identifying resources for dyads who are low-income, do not speak English, or live in rural areas. Caregivers across both sites highly rated CTNs, though satisfaction was higher among those in Nebraska and Iowa. CONCLUSIONS: Innovative approaches to care delivery in dementia are crucial. Care navigation offers a feasible model to train unlicensed people to deliver care as a way to deliver larger-scale support for the growing population of adults living with dementia and their caregivers.

Development of an adaptive, personalized, and scalable dementia care program: Early findings from the Care Ecosystem.

Katherine Possin and colleagues report on the implementation, development, and early findings of the Care Ecosystem, an adaptive, personalized, and scalable dementia care program.

Personal and political histories in the designing of health reform policy in Bolivia.

While health policies are a major focus in disciplines such as public health and public policy, there is a dearth of work on the histories, social contexts, and personalities behind the development of these policies. This article takes an anthropological approach to the study of a health policy's origins, based on ethnographic research conducted in Bolivia between 2010 and 2012. Bolivia began a process of health care reform in 2006, following the election of Evo Morales Ayma, the country's first indigenous president, and leader of the Movement Toward Socialism (Movimiento al Socialism). Brought into power through the momentum of indigenous social movements, the MAS government platform addressed racism, colonialism, and human rights in a number of major reforms, with a focus on cultural identity and indigeneity. One of the MAS's projects was the design of a new national health policy in 2008 called The Family Community Intercultural Health Policy (Salud Familiar Comunitaria Intercultural). This policy aimed to address major health inequities through primary care in a country that is over 60% indigenous. Methods used were interviews with Bolivian policymakers and other stakeholders, participant observation at health policy conferences and in rural community health programs that served as models for aspects of the policy, and document analysis to identify core premises and ideological areas. I argue that health policies are historical both in their relationship to national contexts and events on a timeline, but also because of the ways they intertwine with participants' personal histories, theoretical frameworks, and reflections on national historical events. By studying the Bolivian policymaking process, and particularly those who helped design the policy, it is possible to understand how and why particular progressive ideas were able to translate into policy. More broadly, this work also suggests how a uniquely anthropological approach to the study of health policy can contribute to other disciplines that focus on policy analysis and policy processes.