Evaluating In-home Assistive Technology for Dementia Caregivers.

OBJECTIVES: Dementia caregivers (CGs) are at heightened risk for developing problems with anxiety and depression. Much attention has been directed toward developing and deploying interventions designed to protect CG health, but few have been supported by rigorous empirical evidence. Technology-based interventions that are effective, scalable, and do not add greatly to the CG burden are of particular interest. METHODS: We conducted a nine-month randomized controlled trial in 63 homes evaluating People Power Caregiver (PPCg), a system of sensors in the home connected to cloud-based software that alerts CGs about worrisome deviations from normal patterns (e.g., falls, wandering). RESULTS: CGs in the active condition had significantly less anxiety than those in the control condition at the six-month assessment. Greater anxiety reduction in the active condition at the six-month assessment was associated with greater interaction with PPCg via SMS text messages. There were no differences in anxiety at the three-month or nine-month assessments or in depression at any assessment. CONCLUSIONS: PPCg shows promise for reducing anxiety associated with caring for a =person with dementia. CLINICAL IMPLICATIONS: Technology-based interventions can help reduce CG anxiety, a major adverse consequence of caregiving that may be difficult to treat due to other demands on caregiver time and energy.

Using personal narrative to promote person-centered values in aging, dementia, and caregiving.

Personal narrative is a powerful way to include people in their care and to understand their values that drive their needs. In this paper, we describe a program designed to teach oral history to clinicians and trainees in the field of aging, dementia and caregiving. The training uses empathic listening, open-ended interviewing, and the discovery of individual values and experience to breakdown stigma and preconceptions of what it means to age with cognitive impairment. Sharing these stories of aging, dementia, and caregiving becomes an important tool to break down stereotypes, promote person-centered care, and advocate for the unheard. The profound impact of the oral history process is felt by the narrator, the interviewer and the listener. Human beings are wired for stories, and oral history taps into that power to connect us and provide better care through better understanding.

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.

Outcome measures for Alzheimer's disease: A global inter-societal Delphi consensus.

INTRODUCTION: We aim to provide guidance on outcomes and measures for use in patients with Alzheimer's clinical syndrome. METHODS: A consensus group of 20 voting members nominated by 10 professional societies, and a non-voting chair, used a Delphi approach and modified GRADE criteria. RESULTS: Consensus was reached on priority outcomes (n = 66), measures (n = 49) and statements (n = 37) across nine domains. A number of outcomes and measurement instruments were ranked for: Cognitive abilities; Functional abilities/dependency; Behavioural and neuropsychiatric symptoms; Patient quality of life (QoL); Caregiver QoL; Healthcare and treatment-related outcomes; Medical investigations; Disease-related life events; and Global outcomes. DISCUSSION: This work provides indications on the domains and ideal pertinent measurement instruments that clinicians may wish to use to follow patients with cognitive impairment. More work is needed to develop instruments that are more feasible in the context of the constraints of clinical routine.

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.

Pronoun Use among Caregivers of People Living with Dementia: Associations with Dementia Severity Using Text Analysis of a Natural Language Sample.

Introduction: Family caregivers of persons living with dementia (PLWDs) have extensive social, physical, emotional, and financial responsibilities. However, less is known about the relationship and interpersonal connection between caregivers and PLWDs. We examined caregiver pronoun use, as an index of the connection between the caregiver and PLWD and its associations with the caregiver's and PLWD's health and well-being. Methods: Caregivers of PLWDs (N = 320) were asked to describe a recent time they felt connected to the PLWD in their care. Responses were transcribed and coded to quantify pronoun use by category (we-pronouns, I-pronouns, and they-pronouns). Caregivers also reported on their depression, burden, and the PLWD's dementia severity and marital satisfaction. Sixty-eight caregivers repeated the same survey 24 months after the initial survey. Results: Caregivers used less we-pronouns when the PLWD's dementia was more severe, at both timepoints. Spousal caregivers used more we-pronouns and less I- and they-pronouns than nonspousal caregivers. There was an interaction between spousal relationship and dementia severity, such that spousal caregivers exhibited a stronger negative association between dementia severity and we-pronoun use. There were no associations between pronoun category and caregiver burden or depression. Discussion: Caregivers may feel increasingly disconnected from the PLWD as their dementia becomes more severe, as reflected by less we-pronoun usage. This study highlights the opportunity to explore relationship connection through text analysis.

Responding to the Needs of Persons Living With Dementia and Their Caregivers During the COVID-19 Pandemic: Lessons From the Care Ecosystem.

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic created challenges for persons with dementia, their caregivers, and programs that support them. The Care Ecosystem (CE) is a model of dementia care designed to support people with dementia and their family caregiver dyads through ongoing contact with a care team navigator (CTN) and an expert clinical team. CTNs provide support, education, and resources and help dyads manage dementia-related concerns as they evolve over the course of the disease. We aimed to understand how the CE responded to the needs of dyads during the initial 3 months of the COVID-19 pandemic. Research Design and Methods: We conducted a survey and qualitative interviews with staff members from 4 established CE programs located in 4 different states to explore (a) challenges dyads voiced during the pandemic, (b) CE staff approaches to addressing the needs of dyads, and (c) programmatic challenges faced and lessons learned. Findings: Nine staff members from 4 CE programs with an active collective caseload of 379 dyads were interviewed. Themes were identified that included dyad concerns regarding fear of illness, changing attitudes toward long-term care, decreased availability of services and resources, and impacts on patient and caregiver health and well-being. Programmatic challenges included maintaining effective communication with dyads and program staff, technological readiness, workflow restructuring, and program sustainability. Discussion and Implications: Approaches in supporting people with dementia and their caregivers should demonstrate flexibility, responsivity, and creativity, and these findings provide insight for understanding how dementia care programs can be positioned to offer continuous support for this vulnerable population.

Lower activity linkage between caregivers and persons with neurodegenerative diseases is associated with greater caregiver anxiety.

Physiological linkage refers to the degree to which two individuals' central/peripheral physiological activities change in coordinated ways. Previous research has focused primarily on linkage in the autonomic nervous system in laboratory settings, particularly examining how linkage is associated with social behavior and relationship quality. In this study, we examined how linkage in couples' daily somatic activity (e.g., synchronized movement measured from wrist sensors)-another important aspect of peripheral physiology-was associated with relationship quality and mental health. We focused on persons with neurodegenerative diseases (PWNDs) and their spousal caregivers, whose linkage might have direct implications for the PWND-caregiver relationship and caregiver's health. Twenty-two PWNDs and their caregivers wore wristwatch actigraphy devices that provided continuous measurement of activity over 7 days at home. PWND-caregiver activity linkage was quantified by the degree to which activity was "in-phase" or "anti-phase" linked (i.e., coordinated changes in the same or opposite direction) during waking hours, computed by correlating minute-by-minute activity levels averaged using a 10-min rolling window. Caregivers completed well-validated surveys that assessed their mental health (including anxiety and depression) and relationship quality with the PWND. We found that lower in-phase activity linkage, but not anti-phase linkage, was associated with higher caregiver anxiety. These dyad-level effects were robust, remaining significant after adjusting for somatic activity at the individual level. No effects were found for caregiver depression or relationship quality. These findings suggest activity linkage and wearables may be useful for day-by-day monitoring of vulnerable populations such as family caregivers. We offered several possible explanations for our findings.

"Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic.

BACKGROUND: After a diagnosis of Alzheimer's disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic. OBJECTIVE: To examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic. METHODS: We conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance. RESULTS: Of 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male (n = 6/9); caregivers had a mean age of 67 and were primarily female (n = 21/31). Participants felt they received incomplete or "hesitant" guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources. CONCLUSION: PWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision.

The severity of neuropsychiatric symptoms is higher in early-onset than late-onset Alzheimer's disease.

BACKGROUND AND PURPOSE: The faster rates of cognitive decline and predominance of atypical forms in early-onset Alzheimer's disease (EOAD) suggest that neuropsychiatric symptoms could be different in EOAD compared to late-onset AD (LOAD); however, prior studies based on non-biomarker-diagnosed cohorts show discordant results. Our goal was to determine the profile of neuropsychiatric symptoms in EOAD and LOAD, in a cohort with biomarker/postmortem-confirmed diagnoses. Additionally, the contribution of co-pathologies was explored. METHODS: In all, 219 participants (135 EOAD, 84 LOAD) meeting National Institute on Aging and Alzheimer's Association criteria for AD (115 amyloid positron emission tomography/cerebrospinal fluid biomarkers, 104 postmortem diagnosis) at the University of California San Francisco were evaluated. The Neuropsychiatric Inventory-Questionnaire (NPI-Q) was assessed at baseline and during follow-up. The NPI-Q mean comparisons and regression models adjusted by cognitive (Mini-Mental State Examination) and functional status (Clinical Dementia Rating Sum of Boxes) were performed to determine the effect of EOAD/LOAD and amnestic/non-amnestic diagnosis on NPI-Q. Regression models assessing the effect of co-pathologies on NPI-Q were performed. RESULTS: At baseline, the NPI-Q scores were higher in EOAD compared to LOAD (p < 0.05). Longitudinally, regression models showed a significant effect of diagnosis, where EOAD had higher NPI-Q total, anxiety, motor disturbances and night-time behavior scores (p < 0.05). No differences between amnestics/non-amnestics were found. Argyrophilic grain disease co-pathology predicted a higher severity of NPI-Q scores in LOAD. CONCLUSIONS: Anxiety, night-time behaviors and motor disturbances are more severe in EOAD than LOAD across the disease course. The differential patterns of neuropsychiatric symptoms observed between EOAD/LOAD could suggest a pattern of selective vulnerability extending to the brain's subcortical structures. Further, co-pathologies such as argyrophilic grain disease in LOAD may also play a role in increasing neuropsychiatric symptoms.

Use of Services by People Living Alone With Cognitive Impairment: A Systematic Review.

BACKGROUND AND OBJECTIVES: Formal supports and social services are essential to people living alone with cognitive impairment (PLACI) because they are at risk of negative health outcomes and lack cohabitants who may support them with cognitively demanding tasks. To further our understanding of this critical and worldwide issue, we conducted a systematic review to understand whether, and how, PLACI access and use essential formal supports and services. RESEARCH DESIGN AND METHODS: We searched 6 databases (PubMed, Embase, PsycINFO, CINAHL, Web of Science, and Sociological Abstracts) to identify quantitative and mixed-method literature on formal service use among PLACI. The initial search was conducted in 2018 and updated in 2020. RESULTS: We identified 32 studies published between 1992 and 2019, representing 13 countries, that met our criteria: 16 reported on health services and 26 on social services. Most studies compared PLACI with people with cognitive impairment living with others. Health service use was lower or similar among PLACI, as opposed to counterparts living with others. Most studies reported a higher use of social services (e.g., home services) among PLACI than those living with others. Overall use of essential home service among PLACI was higher in Europe than in the United States, a country where large portions of PLACI were reported receiving no formal services. DISCUSSION AND IMPLICATIONS: We identified wide variability among countries and major gaps in service use. Results for use of health services were mixed, although our findings suggest that PLACI may have fewer physician visits than counterparts living with others. Our findings suggest that varying policies and budgets for these services among countries may have affected our findings. We encourage researchers to evaluate and compare the influence of social policies in the well-being of PLACI. We also encourage policy makers to prioritize the needs of PLACI in national dementia strategies.

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.

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.

Emotion Recognition and Reactivity in Persons With Neurodegenerative Disease Are Differentially Associated With Caregiver Health.

BACKGROUND AND OBJECTIVES: Motivated by the high rates of health problems found among caregivers of persons with neurodegenerative disease, we examined associations between deficits in two aspects of care recipients' socioemotional functioning and their caregivers' health. RESEARCH DESIGN AND METHODS: In 2 studies with independent samples (N = 171 and 73 dyads), caregivers reported on care recipients' emotion recognition and emotional reactivity. Caregiver health was assessed using both self-report measures (Studies 1 and 2) and autonomic nervous system indices (Study 2). RESULTS: Lower emotion recognition in care recipients was linearly associated with worse self-reported health, faster resting heart rate, and greater physiological reactivity to an acoustic startle stimulus in caregivers. These effects held after accounting for a variety of risk factors for poor caregiver health, including care recipients' neuropsychiatric symptoms. Emotional reactivity showed a quadratic association with health, such that the lowest and highest levels of emotional reactivity in care recipients were associated with lower self-reported health in caregivers. DISCUSSION AND IMPLICATIONS: Results shed light on the unique associations between two aspects of care recipients' emotional functioning and caregivers' health. Findings suggest potential ways to identify and help caregivers at heightened risk for adverse health outcomes.

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.

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.

Association Between Caregiver Depression and Emergency Department Use Among Patients With Dementia.

IMPORTANCE: Current attempts to gauge the acute care needs of patients with dementia have not effectively addressed the role of caregivers, despite their extensive involvement in decisions about acute care management. OBJECTIVE: To determine whether caregiver depression is associated with increased use of the emergency department (ED) among patients with dementia. DESIGN, SETTING, AND PARTICIPANTS: This longitudinal cohort study used data from the Care Ecosystem study, a randomized clinical trial examining telephone-based supportive care for patients with dementia and their caregivers. Patients were 45 years or older with any type of dementia. A total of 780 caregiver-patient dyads were enrolled from March 20, 2015, until February 28, 2017, and 663 dyads contributed baseline and 6-month data and were included in the analysis. EXPOSURES: Caregiver depression (9-item Patient Health Questionnaire score of ≥10). Secondary analyses examined caregiver burden and self-efficacy. MAIN OUTCOMES AND MEASURES: The primary outcome was the number of ED visits in a 6-month period. RESULTS: Among the 663 caregivers (467 women and 196 men; mean [SD] age, 64.9 [11.8] years), 84 caregivers (12.7%) had depression at baseline. The mean incidence rate of ED visits was 0.9 per person-year. Rates of ED presentation were higher among dyads whose caregiver did vs did not have depression (1.5 vs 0.8 ED visits per person-year). In a Poisson regression model adjusting for patient age, sex, severity of dementia, number of comorbidities, and baseline ED use, as well as caregiver age and sex, caregiver depression continued to be associated with ED use, with a 73% increase in rates of ED use among dyads with caregivers with depression (adjusted incident rate ratio, 1.73; 95% CI, 1.30-2.30). Caregiver burden was associated with higher ED use in the unadjusted model, but this association did not reach statistical significance after adjustment (incident rate ratio, 1.19; 95% CI, 0.93-1.52). Caregiver self-efficacy was inversely proportional to the number of ED visits in the unadjusted and adjusted models (adjusted incident rate ratio, 0.96; 95% CI, 0.92-0.99). CONCLUSIONS AND RELEVANCE: Among patients with dementia, caregiver depression appears to be significantly associated with increased ED use, revealing a key caregiver vulnerability, which, if addressed with patient- and caregiver-centered dementia care, could improve health outcomes and lower costs for this high-risk population.

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.