Improving the Approach to Defining, Classifying, Reporting and Monitoring Adverse Events in Seriously Ill Older Adults: Recommendations from a Multi-stakeholder Convening.

BACKGROUND: Clinical trials are needed to study topics relevant to older adults with serious illness. Investigators conducting clinical trials with this population are challenged by how to appropriately define, classify, report, and monitor serious and non-serious adverse events (SAEs/AEs), given that some traditionally reported AEs (pressure ulcers, delirium) and SAEs (death, hospitalization) are common in persons with serious illness, and may be consistent with their goals of care. OBJECTIVES: A multi-stakeholder group convened to establish greater clarity on and new approaches to address this critical issue. PARTICIPANTS: Thirty-two study investigators, members of regulatory and sponsor agencies, and patient stakeholders took part. APPROACH: The group met virtually four times and, using a collaborative approach, conducted a survey, select interviews, and reviewed regulatory guidance to collectively define the problem and identify a new approach. RESULTS: SAE/AE challenges fell into two areas: (1) definitions and classifications, including (a) implausible relationships, (b) misalignment with patient-centered care goals, and (c) well-known associations, and (2) reporting and monitoring, including (a) limited guidance, (b) inconsistent standards across regulators, and (c) Data Safety Monitoring Board (DSMB) member knowledge gaps. Problems largely reflected practice norms rather than regulatory requirements that already support context-specific and aggregate reporting. Approaches can be improved by adopting principles that better align strategies for addressing adverse events with the type of intervention being tested, favoring routine and aggregate over expedited reporting, and prioritizing how SAE/AEs relate to patient-centered care goals. Reporting plans and decisions should follow an algorithm underpinned by these principles. CONCLUSIONS: Adoption of the proposed approach-and supporting it with education and better alignment with regulatory guidance and procedures-could improve the quality and efficiency of clinical trials' safety involving older adults with serious illness and other vulnerable populations.

ASPIRE: A Program for Developing Clinician Educators' Scholarship, Advancement, and Sense of Community.

INTRODUCTION: Faculty development programs encouraging clinician educators' scholarship have been established at many medical schools. The same is true for programs that address the isolation and loneliness many faculty members feel in their day-to-day clinical work and administration. Few programs have explicitly combined development of scholarship and sense of community. AIM: The goals of the Advanced Scholars Program for Internists in Research and Education (ASPIRE) are as follows: (1) provide training in scholarship development including research methods, implementation, and dissemination; (2) provide expert mentoring and support for professional development; and (3) create a greater sense of campus community. SETTING: ASPIRE scholars are clinician educators in the Department of Medicine at Indiana University School of Medicine. PROGRAM DESCRIPTION: The program runs 18 months, includes intensive mentoring, covered time for scholars and mentors, resources, and two half-day educational sessions per month focused on scholarship and community development. PROGRAM EVALUATION: Institutional leaders' public statements and actions regarding ASPIRE were documented by program leadership. Data collected from ASPIRE mentors and scholars through interviews and free text survey responses were analyzed using an immersion/crystallization approach. Two central themes were identified for both scholars and mentors: benefits and challenges of the program. Benefits included mentors, program design, community development, increased confidence, skills development, improved patient care, and institutional impact. Challenges included time to accomplish the program, balance of community-building and skills development, and lack of a clear path post-ASPIRE. DISCUSSION: Combining skills-based learning with safe psychological space were judged important elements of success for the ASPIRE program. Conversations are ongoing to identify opportunities for scholars who have completed the program to continue to pursue scholarship, expand their skills, and build community. We conclude that the program both is feasible and was well-received. Sustainability and generalizability are important next steps in ensuring the viability of the program.

Age-specific rates of hospital transfers in long-stay nursing home residents.

INTRODUCTION: hospital transfers and admissions are critical events in the care of nursing home residents. We sought to determine hospital transfer rates at different ages. METHODS: a cohort of 1,187 long-stay nursing home residents who had participated in a Centers for Medicare and Medicaid demonstration project. We analysed the number of hospital transfers of the study participants recorded by the Minimum Data Set. Using a modern regression technique, we depicted the annual rate of hospital transfers as a smooth function of age. RESULTS: transfer rates declined with age in a nonlinear fashion. Rates were the highest among residents younger than 60 years of age (1.30-2.15 transfers per year), relatively stable between 60 and 80 (1.17-1.30 transfers per year) and lower in those older than 80 (0.77-1.17 transfers per year). Factors associated with increased risk of transfers included prior diagnoses of hip fracture (annual incidence rate ratio or IRR: 2.057, 95% confidence interval (CI): [1.240, 3.412]), dialysis (IRR: 1.717, 95% CI: [1.313, 2.246]), urinary tract infection (IRR: 1.755, 95% CI: [1.361, 2.264]), pneumonia (IRR: 1.501, 95% CI: [1.072, 2.104]), daily pain (IRR: 1.297, 95% CI: [1.055,1.594]), anaemia (IRR: 1.229, 95% CI [1.068, 1.414]) and chronic obstructive pulmonary disease (IRR: 1.168, 95% CI: [1.010,1.352]). Transfer rates were lower in residents who had orders reflecting preferences for comfort care (IRR: 0.79, 95% CI: [0.665, 0.936]). DISCUSSION: younger nursing home residents may require specialised interventions to reduce hospital transfers; declining transfer rates with the oldest age groups may reflect preferences for comfort-focused care.

Do Life-sustaining Treatment Orders Match Patient and Surrogate Preferences? The Role of POLST.

BACKGROUND: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices. OBJECTIVE: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms. DESIGN: Chart review and interviews. SETTING: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use). PARTICIPANTS: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms. MAIN MEASUREMENTS: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83). KEY RESULTS: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance. CONCLUSIONS: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.

Facility and resident characteristics associated with variation in nursing home transfers: evidence from the OPTIMISTIC demonstration project.

BACKGROUND: Centers for Medicare and Medicaid Services (CMS) funded demonstration project to evaluate financial incentives for nursing facilities providing care for 6 clinical conditions to reduce potentially avoidable hospitalizations (PAHs). The Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) site tested payment incentives alone and in combination with the successful nurse-led OPTIMISTIC clinical model. Our objective was to identify facility and resident characteristics associated with transfers, including financial incentives with or without the clinical model. METHODS: This was a longitudinal analysis from April 2017 to June 2018 of transfers among nursing home residents in 40 nursing facilities, 17 had the full clinical + payment model (1726 residents) and 23 had payment only model (2142 residents). Using CMS claims data, the Minimum Data Set, and Nursing Home Compare, multilevel logit models estimated the likelihood of all-cause transfers and PAHs (based on CMS claims data and ICD-codes) associated with facility and resident characteristics. RESULTS: The clinical + payment model was associated with 4.1 percentage points (pps) lower risk of all-cause transfers (95% confidence interval [CI] - 6.2 to - 2.1). Characteristics associated with lower PAH risk included residents aged 95+ years (- 2.4 pps; 95% CI - 3.8 to - 1.1), Medicare-Medicaid dual-eligibility (- 2.5 pps; 95% CI - 3.3 to - 1.7), advanced and moderate cognitive impairment (- 3.3 pps; 95% CI - 4.4 to - 2.1; - 1.2 pps; 95% CI - 2.2 to - 0.2). Changes in Health, End-stage disease and Symptoms and Signs (CHESS) score above most stable (CHESS score 4) increased the risk of PAH by 7.3 pps (95% CI 1.5 to 13.1). CONCLUSIONS: Multiple resident and facility characteristics are associated with transfers. Facilities with the clinical + payment model demonstrated lower risk of all-cause transfers compared to those with payment only, but not for PAHs.

Factors Associated with Physician Moral Distress Caring for Hospitalized Elderly Patients Needing a Surrogate Decision-maker: a Prospective Study.

BACKGROUND: When working with surrogate decision-makers, physicians often encounter ethical challenges that may cause moral distress which can have negative consequences for physicians. OBJECTIVE: To determine frequency of and factors associated with physicians' moral distress caring for patients requiring a surrogate. DESIGN: Prospective survey. PARTICIPANTS: Physicians (n = 154) caring for patients aged 65 years and older and their surrogate decision-makers (n = 362 patient/surrogate dyads). Patients were admitted to medicine or medical intensive care services, lacked decisional capacity and had an identified surrogate. MAIN MEASURES: Moral distress thermometer. KEY RESULTS: Physicians experienced moral distress in the care of 152 of 362 patients (42.0%). In analyses adjusted for physician, patient, and surrogate characteristics, physician/surrogate discordance in preferences for the plan of care was not significantly associated with moral distress. Physicians were more likely to experience moral distress when caring for older patients (1.06, 1.02-1.10), and facing a decision about life-sustaining treatment (3.58, 1.54-8.32). Physicians were less likely to experience moral distress when caring for patients residing in a nursing home (0.40, 0.23-0.69), patients who previously discussed care preferences (0.56, 0.35-0.90), and higher surrogate ratings of emotional support from clinicians (0.94, 0.89-0.99). Physicians' internal discordance when they prefer a more comfort-focused plan than the patient is receiving was associated with significantly higher moral distress (2.22, 1.33-3.70) after adjusting for patient, surrogate, and physician characteristics. CONCLUSIONS: Physician moral distress occurs more frequently when the physician is male, the patient is older or requires decisions about life-sustaining treatments. These findings may help target interventions to support physicians. Prior discussions about patient wishes is associated with lower distress and may be a target for patient-centered interventions.

Communication Quality Predicts Psychological Well-Being and Satisfaction in Family Surrogates of Hospitalized Older Adults: An Observational Study.

BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization. OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults. DESIGN: Observational study at three hospitals in a Midwest metropolitan area. PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study. MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems). KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate-severe anxiety); 29% reported depression, (14.0% moderate-severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001). CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.

Hospice use among nursing home and non-nursing home patients.

BACKGROUND: For nursing home patients, hospice use and associated costs have grown dramatically. A better understanding of hospice in all care settings, especially how patients move across settings, is needed to inform debates about appropriateness of use and potential policy reform. OBJECTIVE: Our aim was to describe characteristics and utilization of hospice among nursing home and non-nursing home patients. DESIGN AND PARTICIPANTS: Medicare, Medicaid and Minimum Data Set data, 1999-2008, were merged for 3,771 hospice patients aged 65 years and above from a safety net health system. Patients were classified into four groups who received hospice: 1) only in nursing homes; 2) outside of nursing homes; 3) crossover patients utilizing hospice in both settings; and 4) "near-transition" patients who received hospice within 30 days of a nursing home stay. MAIN MEASURES: Differences in demographics, hospice diagnoses and length of stay, utilization and costs are presented with descriptive statistics. KEY RESULTS: Nursing home hospice patients were older, and more likely to be women and to have dementia (p < 0.0001). Nearly one-third (32.3 %) of crossover patients had hospice stays > 6 months, compared with the other groups (16 % of nursing home hospice only, 10.7 % of non-nursing home hospice and 7.6 % of those with near transitions) (p < 0.0001). Overall, 27.7 % of patients had a hospice stay <1 week, but there were marked differences between groups-48 % of near-transition patients vs. 7.4 % of crossover patients had these short hospice stays (p < 0.0001). Crossover and near-transition hospice patients had higher costs to Medicare compared to other groups (p < 0.05). CONCLUSIONS: Dichotomizing hospice users only into nursing home vs. non-nursing home patients is difficult, due to transitions across settings. Hospice patients with transitions accrue higher costs. The impact of changes to the hospice benefit on patients who live or move through nursing homes near the end of life should be carefully considered.

Advanced dementia: state of the art and priorities for the next decade.

Dementia is a leading cause of death in the United States. This article outlines the current understanding of advanced dementia and identifies research priorities for the next decade. Research over the past 25 years has largely focused on describing the experience of patients with advanced dementia. This work has delineated abundant opportunities for improvement, including greater recognition of advanced dementia as a terminal illness, better treatment of distressing symptoms, increased access to hospice and palliative care services, and less use of costly and aggressive treatments that may be of limited clinical benefit. Addressing those opportunities must be the overarching objective for the field in the coming decade. Priority areas include designing and testing interventions that promote high-quality, goal-directed care; health policy research to identify strategies that incentivize cost-effective and evidence-based care; implementation studies of promising interventions and policies; and further development of disease-specific outcome measures. There is great need and opportunity to improve outcomes, contain expenditures, reduce disparities, and better coordinate care for the millions of persons in the United States who have advanced dementia.

The Quick FICS: 5 and 10 Item Versions of the Family Inpatient Communication Survey.

CONTEXT: Communication quality in the hospital impacts outcomes like satisfaction, depression, and anxiety for families, and assessment tools must be efficient and reliable. OBJECTIVES: We developed the Quick FICS-5 and -10, shorter versions of the 30-item Family Inpatient Communication Survey (FICS). METHODS: The Quick FICS were developed from the original FICS study of hospitalized patients 65+ and their surrogates. The development sample came from the original FICS-30 scale. The validation sample came from a randomized controlled trial of surrogates for adult ICU patients. Participants were family members of patients on medical ICU or inpatient medicine services at three hospitals in a Midwest metropolitan area. We evaluated validity and reliability using factor analysis, internal consistency, and associations with surrogate psychological and decision-making outcomes. RESULTS: In the development sample of 364 patient/surrogate dyads, most surrogates were adult children (66.8%), female (70.9%), and white (68.9%). We identified 5-item and 10-item surveys. Exploratory factor analysis supported an overall communication score for the FICS-5 and FICS-10, as well as information and emotional support subscales for the FICS-10. There was high internal reliability (Cronbach's alpha was 0.83 for the FICS-5 and 0.90 for the FICS-10; information and emotional support subscales were 0.89 and 0.75 respectively). There was good predictive validity when comparing FICS scores to outcomes six to eight weeks after discharge, including anxiety (P = -0.13; P = 0.0234), and satisfaction with the hospital stay (P = 0.48; P < 0.0001). Similarly, the validation sample (n = 188) revealed Cronbach's alpha ranging from 0.81 to 0.93 and significant correlations (P < 0.05) with concurrent distress, anxiety, depression, and decision regret. CONCLUSIONS: The Quick FICS offers efficient, valid, and reliable evaluation of communication quality in the hospital that can be useful for research and quality improvement.

Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE): Protocol for a randomized controlled trial in persons with advanced dementia.

BACKGROUND: Dementia affects 6.5 million persons in the U.S., a number which is expected to double by 2060. More than half of persons with dementia die at home, creating an enormous burden for both patients and caregivers. However, there is a paucity of research on community-based palliative care interventions for advanced dementia. OBJECTIVES: The Indiana Palliative Excellence in Alzheimer's Care Efforts (IN-PEACE) study is a randomized trial to test the effectiveness of a collaborative predominantly telehealth home-based intervention for persons with advanced dementia residing in the community and their primary, informal caregivers. The primary aim is to determine if this palliative care focused supportive intervention is superior to usual care in reducing neuropsychiatric symptoms of dementia. Secondarily, intervention effects on other patient symptoms (e.g., pain), caregiver distress and depression, and emergency department (ED)/hospitalization events are examined. METHODS: The study population consists of participant pairs comprising a person with dementia and their primary, informal caregiver. The person with dementia must be ≥65 years old, with a clinical diagnosis of moderate to severe dementia. A total of 201 demographically and socioeconomically diverse participant pairs have been randomized to the IN-PEACE care coordination intervention (n = 99) or usual care (n = 102). Outcome assessments are conducted at baseline, and quarterly for up to 2 years (3, 6, 9, 12, 15, 18, 21, and 24 months). DISCUSSION: IN-PEACE results will inform care for the large number of individuals with advanced dementia residing in the community and enable informal caregivers to provide effective home-based care. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT03773757.

The symptom experience of community-dwelling persons with dementia: self and caregiver report and comparison with standardized symptom assessment measures.

OBJECTIVES: : The symptom experience of community-dwelling persons with dementia adopting an open-ended approach has not been well documented. We sought to identify the most bothersome symptoms experienced using self and caregiver report, and to evaluate whether these symptoms are captured by commonly used symptom-assessment measures including the Edmonton Symptom Assessment System (ESAS, standard in palliative care), Neuropsychiatric Inventory (NPI), and End-of-Life Dementia Scale-Symptom Management (ELDS-SM). DESIGN: : The authors use data from the Palliative Excellence in Alzheimer Care Efforts (PEACE) study to characterize the symptom experience. SETTING: : PEACE included outpatient primary care geriatric patients in an urban setting affiliated with the University of Chicago. PARTICIPANTS: : Data were examined from the 150 patient-caregiver dyads. MEASUREMENTS: : The most bothersome symptoms of persons with dementia during the past week were reported separately by self and family caregiver. Symptoms were asked in an open-ended format and qualitative analysis using constant comparative technique was applied for each response. Reports were categorized and frequencies tabulated. RESULTS: : One hundred fifteen persons (35 could not respond to the interview questions) with dementia reported 135 symptoms (median 1, range: 0-3). The most frequently reported symptoms were pain (N = 48; 42%), depression (N = 13; 11%), cognitive deficit (N = 12; 10%), anxiety (N = 7; 6%), and ophthalmologic complaint (N = 5; 4%). One hundred fifty caregivers reported 259 symptoms (median 2, range: 0-5) with cognitive deficit (N = 71; 47%), pain (N = 46; 30%), depression (N = 26; 17%), activity disturbance (N = 23; 15%), and thought and perceptual disturbances (N = 12; 8%) being reported most frequently. The ESAS, NPI, and ELDS-SM missed two or more of the most commonly reported symptoms by dyads of persons with dementia and their family caregivers. CONCLUSION: : Symptoms were frequently reported by persons with dementia and their caregiver; however, commonly used symptom assessment measures overlooked important symptoms. All physicians should be vigilant about screening for both psychologic and physical symptoms in this population.

Cognitive impairment: an independent predictor of excess mortality: a cohort study.

BACKGROUND: Dementia is a leading cause of death among older adults, but less is known about the mortality risk associated with milder forms of cognitive impairment. OBJECTIVE: To determine whether cognitive impairment is independently associated with increased long-term mortality in primary care patients aged 60 years and older. DESIGN: Linkage of electronic health records from a cohort recruited between January 1991 and May 1993 with data from the National Death Index through 31 December 2006. SETTING: A public safety-net hospital and its community health centers. PATIENTS: 3957 older adults aged 60 to 102 years who were screened at scheduled primary care appointments. MEASUREMENTS: At baseline, patients were screened for cognitive impairment by using the Short Portable Mental Status Questionnaire and were categorized into groups with no, mild, or moderate to severe cognitive impairment. Baseline data from comprehensive electronic health records were linked with vital status obtained from the National Death Index. Kaplan-Meier survival curves compared time to death for the groups with cognitive impairment. Cox proportional hazards models controlled for mortality risk factors. RESULTS: At baseline, 3157 patients had no cognitive impairment, 533 had mild impairment, and 267 had moderate to severe impairment. Overall, 2385 of the 3957 patients (60.3%) died during the observation period: 1812 (57.4%) patients with no cognitive impairment, 363 (68.1%) patients with mild impairment, and 210 (78.7%) patients with moderate to severe impairment. Both mild and moderate to severe cognitive impairment were associated with increased mortality hazard independent of other mortality risk factors (hazard ratio, 1.184 [95% CI, 1.051 to 1.334] and for mild impairment 1.447 [CI, 1.235 to 1.695] for moderate to severe impairment). Median survival for all 3957 participants was 129 months. Median survival for participants with no, mild, and moderate to severe cognitive impairment was 138, 106, and 63 months, respectively. LIMITATIONS: Cognition was assessed only at enrollment by using a screening instrument. Participants were drawn from a single safety-net health system and had low educational and socioeconomic status, which limits generalizability to other populations. Changes in cognition, function, and comorbid conditions were not measured over time. CONCLUSION: Both mild and moderate to severe cognitive impairment as identified by the Short Portable Mental Status Questionnaire are associated with an increased risk for mortality. PRIMARY FUNDING SOURCE: Agency for Healthcare Research and Quality.

Rethinking Decision Quality: Measures, Meaning, and Bioethics.

Studies of patient decision-making use many different measures to evaluate the quality of decisions and the decision-making process, partly to determine whether the ethical goals of informed consent, patient autonomy, and shared decision-making have been achieved. We describe these measures, grouped under three main approaches, and review their limitations, leading to three conclusions. First, no measure or combination of measures can provide a complete assessment of decision quality. Second, the quality of a decision is best characterized vaguely, for instance as "good," "satisfactory," or "poor," and these categorizations depend on qualitative judgments that go beyond quantitative measures. Third, bioethicists should focus on identifying and addressing poor or problematic decisions, rather than trying to incrementally increase decision quality, quantified by a measure. Decision-quality measures can be useful in research and in advancing important goals of bioethics, as long as the challenges of defining and measuring decision quality are recognized.

Prevalence and Predictors of Symptoms in Persons with Advanced Dementia Living in the Community.

Background: Behavioral, psychological, and physical symptoms are prevalent in advanced dementia, as well as major contributors to poor quality of life, health care costs, caregiver burden, and nursing home placement. Objectives: To determine the frequency and severity of symptoms in persons with advanced dementia living in the community, as well as the association between symptoms and satisfaction with care, and the identification of factors associated with symptom burden. Design: Baseline data from a clinical trial testing the effectiveness of collaborative care home-based management for patients with advanced dementia. Setting/Subjects: Two hundred and one patient-caregiver dyads from an urban area in the United States, who were still residing in the community. Measurements: Caregivers completed the Symptom Management in End-of-Life Dementia (SM-EOLD) and Satisfaction with Care in End-of-Life Dementia (SWC-EOLD) scales. Results: Patients' mean age was 83.1; 67.7% were women, and most were either White (50.2%) or African American (43.8%). Most (88.1%) had severe dementia (Functional Assessment Staging Tool [FAST] stage 6 or 7). SM-EOLD mean score was 29.3 (on 0-45 scale) and SWC-EOLD score was 32.6 (on 10-40 scale). Pain, agitation, anxiety, and resistiveness to care were present at least weekly in ≥40% of patients. Multivariable linear regression modeling showed that higher neuropsychiatric symptom severity (assessed by the Neuropsychiatric Inventory), increased caregiver strain, and higher medical comorbidity were all independently associated with increased symptom burden. Satisfaction with care was high and had only a modest correlation (r = 0.20) with symptom burden. Conclusions: Community-dwelling patients with advanced dementia and their caregivers may benefit from home-based palliative care interventions to identify and manage burdensome symptoms.

Improving Care for People Living With Dementia and Diabetes: Applying the Human-Centered Design Process to Continuous Glucose Monitoring.

People with Alzheimer's disease or related dementias and diabetes mellitus (ADRD-DM) are at high risk for hypoglycemic events. Their cognitive impairment and psychosocial situation often hinder detection of hypoglycemia. Extending use and benefits of continuous glucose monitoring (CGM) to people with ADRD-DM could improve hypoglycemia detection, inform care, and reduce adverse events. However, cognitive impairment associated with ADRD presents unique challenges for CGM use. This commentary proposes applying the human-centered design process to CGM, investigating design solutions or interventions needed to integrate CGM into the health care of patients with ADRD-DM. With this process, we can identify and inform CGM designs for people with ADRD-DM, broadening CGM access, increasing detection and treatment of the silent threat posed by hypoglycemia.

Implementing innovative models of dementia care: The Healthy Aging Brain Center.

BACKGROUND: Recent randomized controlled trials have demonstrated the effectiveness of the collaborative dementia care model targeting both the patients suffering from dementia and their informal caregivers. OBJECTIVE: To implement a sustainable collaborative dementia care program in a public health care system in Indianapolis. METHODS: We used the framework of Complex Adaptive System and the tool of the Reflective Adaptive Process to translate the results of the dementia care trial into the Healthy Aging Brain Center (HABC). RESULTS: Within its first year of operation, the HABC delivered 528 visits to serve 208 patients and 176 informal caregivers. The mean age of HABC patients was 73.8 (standard deviation, SD 9.5), 40% were African-Americans, 42% had less than high school education, 14% had normal cognitive status, 39% received a diagnosis of mild cognitive impairment, and 46% were diagnosed with dementia. Within 12 months of the initial HABC visit, 28% of patients had at least one visit to an emergency room (ER) and 14% were hospitalized with a mean length of stay of five days. The rate of a one-week ER revisit was 14% and the 30-day rehospitalization rate was 11%. Only 5% of HABC patients received an order for neuroleptics and only 16% had simultaneous orders for both definite anticholinergic and anti-dementia drugs. CONCLUSION: The tools of 'implementation science' can be utilized to translate a health care delivery model developed in the research laboratory to a practical, operational, health care delivery program.