Care Ecosystem Collaborative Model and Health Care Costs in Medicare Beneficiaries With Dementia: A Secondary Analysis of a Randomized Clinical Trial.

Importance: Collaborative dementia care programs are effective in addressing the needs of patients with dementia and their caregivers. However, attempts to consider effects on health care spending have been limited, leaving a critical gap in the conversation around value-based dementia care. Objective: To determine the effect of participation in collaborative dementia care on total Medicare reimbursement costs compared with usual care. Design, Setting, and Participants: This was a prespecified secondary analysis of the Care Ecosystem trial, a 12-month, single-blind, parallel-group randomized clinical trial conducted from March 2015 to March 2018 at 2 academic medical centers in California and Nebraska. Participants were patients with dementia who were living in the community, aged 45 years or older, and had a primary caregiver and Medicare fee-for-service coverage for the duration of the trial. Intervention: Telehealth dementia care program that entailed assignment to an unlicensed dementia care guide who provided caregiver support, standardized education, and connection to licensed dementia care specialists. Main Outcomes and Measures: Primary outcome was the sum of all Medicare claim payments during study enrollment, excluding Part D (drugs). Results: Of the 780 patients in the Care Ecosystem trial, 460 (59.0%) were eligible for and included in this analysis. Patients had a median (IQR) age of 78 (72-84) years, and 256 (55.7%) identified as female. Participation in collaborative dementia care reduced the total cost of care by $3290 from 1 to 6 months postenrollment (95% CI, -$6149 to -$431; P = .02) and by $3027 from 7 to 12 months postenrollment (95% CI, -$5899 to -$154; P = .04), corresponding overall to a mean monthly cost reduction of $526 across 12 months. An evaluation of baseline predictors of greater cost reduction identified trends for recent emergency department visit (-$5944; 95% CI, -$10 336 to -$1553; interaction P = .07) and caregiver depression (-$6556; 95% CI, -$11 059 to -$2052; interaction P = .05). Conclusions and Relevance: In this secondary analysis of a randomized clinical trial among Medicare beneficiaries with dementia, the Care Ecosystem model was associated with lower total cost of care compared with usual care. Collaborative dementia care programs are a cost-effective, high-value model for dementia care. Trial Registration: ClinicalTrials.gov Identifier: NCT02213458.

"Out of the clear blue sky she tells me she loves me": Connection experiences between caregivers and people with dementia.

BACKGROUND: Dementia can impede the relationship and connection between the person with dementia (PWD) and their caregiver. Yet, caregiving in dementia also offers opportunities for connection, which has implications for caregiver and PWD well-being. In this qualitative study, we describe and characterize ways caregivers felt connected to the person with dementia they care for. METHODS: We conducted a telephone-based survey with caregivers of people with dementia. For this paper, we analyzed responses to an open-ended question focused on when caregivers feel most connected to the person they are caring for. Responses were analyzed and coded and themes were identified through an iterative process involving a multidisciplinary team of researchers and clinicians. RESULTS: 437 caregivers participated in this study. We identified two domains of connection: activity-based and emotion-based connections. Within activity-based connections, the following themes emerged: everyday activities; reminiscing; activities of caregiving; novel experiences; and time with family and friends. Within emotional connections, the following themes emerged: expressions of love, appreciation, and gratitude; physical affection; sharing an emotion or emotional experience; and times when the PWD seems like "themself" again. CONCLUSIONS: Findings provide insights into ways caregivers experience a sense of connection with the person they care for. There is a call to shift away from focusing on reducing stress and toward optimizing positive experiences as a way to better support caregivers' health and well-being. Interventions that leverage these insights to foster caregiver - PWD connection could lead to better health and well-being for both members of the dyad. The amplification of a positive experience may be particularly important for caregivers who are struggling with limited support or respite. Clinicians may be interested in using a question about connection as a way to more fully understand a caregiver's current experience.

Effect of collaborative dementia care on potentially inappropriate medication use: Outcomes from the Care Ecosystem randomized clinical trial.

INTRODUCTION: Potentially inappropriate medications (PIMs) cause adverse events and death. We evaluate the Care Ecosystem (CE) collaborative dementia care program on medication use among community-dwelling persons living with dementia (PLWD). METHODS: Secondary analysis of a randomized clinical trial (RCT) comparing CE to usual care (UC) on changes in PIMs, over 12 months between March 2015 and May 2020. Secondary outcomes included change in number of medications, clinically relevant PIMs, and anti-dementia medications. RESULTS: Of 804 PLWD, N = 490 had complete medication data. The CE resulted in significantly fewer PIMs compared to UC (-0.35; 95% CI, -0.49 to -0.20; P < 0.0001). Number needed to prevent an increase in 1 PIM was 3. Total medications, PIMs for dementia or cognitive impairment, CNS-active PIMs, anticholinergics, benzodiazepines, and opioids were also fewer. Anti-dementia medication regimens were modified more frequently. CONCLUSION: The CE medication review intervention embedded in collaborative dementia care optimized medication use among PLWD. HIGHLIGHTS: Compared to usual care (UC), the Care Ecosystem (CE) medication review intervention prevented increases in potentially inappropriate medications (PIMs). Use of anticholinergics, benzodiazepines, and opioids were significantly reduced, with a trend for antipsychotics. Anti-dementia medications were adjusted more frequently. The CE medication review intervention embedded in collaborative dementia care optimized medication use.

Interventions for Rural Caregiver Health: An Integrative Review.

Few health behavior interventions exist for rural caregivers of persons with dementia (PWD) in the United States. Of interventions that have been studied, little is known about health outcomes that are included in interventions and which interventions are most effective on health outcomes. An integrative literature review of intervention studies for rural caregiver health throughout the United States was undertaken with an emphasis on concepts related to health promotion, self-management, self-care, and/or self-efficacy. Findings from this review indicated multicomponent interventions that included self-care strategies were associated with improvements of caregiver psychosocial health outcomes of depression, burden, self-efficacy, social support, and self-rated health. Sleep problems and endurance potential were the only physical health outcomes measured. To prevent adverse physical health outcomes, interventions with attention to rural context are needed that emphasize health promotion with a focus on health behaviors and health outcome measurement in rural caregivers of PWD. [Research in Gerontological Nursing, 15(2), 101-108.].

Use of Telephone- and Internet-Based Support to Elicit and Address Financial Abuse and Mismanagement in Dementia: Experiences from the Care Ecosystem Study.

BACKGROUND: Financial mismanagement and abuse in dementia have serious consequences for patients and their families. Vulnerability to these outcomes reflects both patient and contextual factors. OBJECTIVE: Our study aimed to assess how multidisciplinary care coordination programs assist families in addressing psychosocial vulnerabilities and accessing needed resources. METHODS: Our study was embedded in a clinical trial of the Care Ecosystem, a telephone- and internet-based supportive care intervention for patients with dementia and caregivers. This program is built around the role of the Care Team Navigator (CTN), an unlicensed dementia care guide who serves as the patient and caregiver's primary point of contact, screening for common problems and providing support. We conducted a qualitative analysis of case summaries from a subset of 19 patient/caregiver dyads identified as having increased risk for financial mismanagement and abuse, to examine how Care Ecosystem staff identified vulnerabilities and provided support to patients and families. RESULTS: CTNs elicited patient and caregiver needs using templated conversations to address common financial and legal planning issues in dementia. Sources of financial vulnerability included changes in patients' behavior, caregiver burden, intrafamily tension, and confusion about resources to facilitate end-of-life planning. The Care Ecosystem staff's rapport with their dyads helped them address these issues by providing emotional support, information on how to access financial, medical, and legal resources, and improving intra-familial communication. CONCLUSION: The Care Ecosystem offers a scalable way to address vulnerabilities to financial mismanagement and abuse in patients and caregivers through coordinated care by unlicensed care guides supported by a multidisciplinary team.

Long-term digital device-enabled monitoring of functional status: Implications for management of persons with Alzheimer's disease.

INTRODUCTION: Informal caregiving is an essential element of health-care delivery. Little data describes how caregivers structure care recipients' lives and impact their functional status. METHODS: We performed observational studies of community dwelling persons with dementia (PWD) to measure functional status by simultaneous assessment of physical activity (PA) and lifespace (LS). We present data from two caregiver/care-recipient dyads representing higher and average degrees of caregiver involvement. RESULTS: We acquired >42,800 (subject 1); >41,300 (subject 2) PA data points and >154,500 (subject 1); >119,700 (subject 2) LS data points over 15 months of near continuous observation. PA and LS patterns provided insights into the caregiver's role in structuring the PWD's day-to-day function and change in function over time. DISCUSSION: We show that device-enabled functional monitoring (FM) can successfully gather and display data at resolutions required for dementia care studies. Objective quantification of individual caregiver/care-recipient dyads provides opportunities to implement patient-centered care.

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.

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.

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.

Extended, continuous measures of functional status in community dwelling persons with Alzheimer's and related dementia: Infrastructure, performance, tradeoffs, preliminary data, and promise.

BACKGROUND: The past decades have seen phenomenal growth in the availability of inexpensive and powerful personal computing devices. Efforts to leverage these devices to improve health care outcomes promise to remake many aspects of healthcare delivery, but remain in their infancy. NEW METHOD: We describe the development of a mobile health platform designed for daily measures of functional status in ambulatory, community dwelling subjects, including those who have Alzheimer's disease or related neurodegenerative disorders. Using Smartwatches and Smartphones we measure subject overall activity and outdoor location (to derive their lifespace). These clinically-relevant measures allow us to track a subject's functional status in their natural environment over prolonged periods of time without repeated visits to healthcare providers. Functional status metrics are integrated with medical information and caregiver reports, which are used by a caregiving team to guide referrals for physician/APRN/NP care. COMPARISON: with Existing Methods We describe the design tradeoffs involved in all aspects of our current system architecture, focusing on decisions with significant impact on system cost, performance, scalability, and user-adherence. RESULTS: We provide real-world data from current subject enrollees demonstrating system accuracy and reliability. CONCLUSIONS: We document real-world feasibility in a group of men and women with dementia that Smartwatches/Smartphones can provide long-term, relevant clinical data regarding individual functional status. We describe the underlying considerations of this system so that interested organizations can adapt and scale our approach to their needs. Finally, we provide a potential agenda to guide development of future systems.

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.