"There has to be more caring": patient and care partner experiences of the disclosure of amyloid-ß PET scan results.

OBJECTIVES: To explore patient and care partner experiences of receiving an amyloid scan result, with a focus on how clinician disclosure practices influenced patient and care partner emotional responses to the scan result and/or diagnosis. METHODS: Semi-structured interviews with 38 people with mild cognitive impairment or dementia and 62 care partners who experienced the disclosure of results from an amyloid PET scan as part of the CARE-IDEAS study. We used thematic analysis to analyze interview transcripts. RESULTS: We identified four aspects of the disclosure process that could influence patient and care partner emotional experiences of the scan result/diagnosis: (1) mode of delivery, (2) presence of a care partner, (3) clarity of the scan result explanation, and (4) discussion of post-scan treatment and support options. CONCLUSIONS: Emotional experiences of an amyloid scan result can vary depending on how results are communicated. These findings support previous efforts to develop standard disclosure protocols. Scan results should be delivered in person with the care partner present. Clinicians should give a clear explanation of the result and its implications in an empathetic manner. Options for treatment and support should be discussed for all patients.

"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-ß PET scan results and caregiver burden.

BACKGROUND: Caregiver burden consists of disease specific and perceived stressors, respectively referred to as objective and subjective indicators of burden, and is associated with negative outcomes. Previous research has found that care partners to persons living with cognitive impairment and elevated levels of amyloid-ß, as measured by a positron emission tomography (PET) scan, may experience caregiver burden. AIMS: To elucidate the relationship between amyloid scan results and subjective and objective indicators of burden. METHODS: A parallel mixed-methods design using survey data from 1338 care partners to persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study; and semi-structured interviews with a subsample of 62 care partners. Logistic regression models were used to investigate objective factors associated with caregiver burden. A thematic analysis of semi-structured interviews was used to investigate subjective indicators by exploring care partners' perceptions of their role following an amyloid scan. RESULTS: Elevated amyloid was not associated with burden. However, the scan result influenced participants perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, whereas partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support. CONCLUSIONS: Amyloid scans can influence subjective indicators of burden and present the opportunity to identify and address care partners' support needs.

Advance directives among cognitively impaired persons who had an amyloid PET scan and their care partners: a mixed-methods study.

BACKGROUND: Little research exists on the role of ß-amyloid PET scans as part of Alzheimer's diagnostic tests and documentation of end-of-life preferences for persons with cognitive impairment. The study objectives were to examine the association of amyloid PET scan results (elevated vs. not elevated amyloid levels) and diagnostic category (mild cognitive impairment vs. dementia) with the likelihood of having an advance directive (reported a median of 4.5 months post-scan); to explore perceptions of PET scan results and their influence on planning for the future among persons with cognitive impairment and their care partners. METHODS: Sequential, explanatory mixed-methods design using data from dyads in the CARE-IDEAS study: advance directives as a factor of diagnostic category and scan result using multivariable logistic regression models; thematic analysis of semi-structured interviews with persons with cognitive impairment and care partners to explore how scan results influenced documentation of future healthcare preferences. Participants included 1784 persons with cognitive impairment and care partners from the CARE-IDEAS study, and a subsample of 100 semi-structured telephone interviews. RESULTS: 81.6% of dyads reported an advance directive. Non-Hispanic, White participants had higher rates of advance directives. There was no significant association between having an advance directive and scan results. Qualitative analysis provided insight into perceived urgency to have advance directives, evolving healthcare preferences, and the context of completing advance directives. CONCLUSIONS: Although amyloid PET scans prompted persons with cognitive impairment and care partners to consider progressive cognitive impairment as part of evolving healthcare preferences, we found substantial variability in the perceived urgency of documentation.

Nursing home leaders' perceptions of a research partnership.

BACKGROUND/OBJECTIVE: Partnerships between healthcare providers and researchers may accelerate the translation of interventions into widespread practice by testing them under real-world conditions, but depend on provider's willingness to engage with researchers and ability to fully implement an intervention. AIM: To understand nursing home leader's motivations for participating in a research study and perceptions of the process and value. METHODS: After a feasibility study of tuned lighting in a nursing home, we conducted semi-structured telephone interviews with six facility leaders. Interviews were audio-recorded, transcribed, and independently coded by four investigators. RESULTS: Three themes emerged: (1) The importance of the nursing home's culture and context: the facility had stable leadership, clear processes for prioritizing and implementing new initiatives, and an established interest in the study's topic. (2) The importance of leader's belief in the value of the intervention: leaders perceived research generally and the intervention specifically as positively impacting their facility and residents. (3) The importance of ongoing collaboration and flexibility throughout the study period: leaders served as champions to catalyze the project and overcome implementation barriers. CONCLUSION: Nursing home leader's perspectives about their participation in a feasibility study underscore the importance of establishing strong researcher-provider partnerships, understanding the environment in which the intervention will be implemented, and employing pragmatic methods that allow for flexibility in response to real-world implementation barriers. We recommend eliciting qualitative information to understand the environment in which an intervention will be implemented and to engage opinion leaders who can inform the protocol and champion its success.

An Examination of the First 30 Days After Patients are Discharged to the Community From Hip Fracture Postacute Care.

BACKGROUND: Postacute care (PAC) rehabilitation aims to maximize independence and facilitate a safe community transition. Yet little is known about PAC patients' success in staying home after discharge or differences on this outcome across PAC providers. OBJECTIVES: Examine the percentage of PAC patients who remain in the community at least 30 days after discharge (ie, successful community discharge) after hip fracture rehabilitation and describe differences among PAC facilities based on this outcome. RESEARCH DESIGN: Retrospective observational study. SUBJECTS: Community-dwelling, Medicare fee-for-service beneficiaries 75 years of age and above who experienced their first hip fracture between 1999 and 2007 (n=880,779). PAC facilities admitting hip fracture patients in 2006. MEASURES: Successful community discharge, sites of readmission after PAC discharge. RESULTS: Between 1999 and 2007, 57% of patients achieved successful community discharge. Black were less likely (adjusted odds ratios=0.84; 95% confidence interval, 0.82-0.86) than similar whites to achieve successful community discharge. Among all who reentered the community (n=581,095), 14% remained in the community <30 days. Acute hospitals (67.5%) and institutional PAC (16.8%) were the most common sites of reentry. The median proportion of successful community discharge among facilities was 49% (interquartile range, 33%-66%). Lowest-quartile facilities admitted older (85.9 vs. 84.1 y of age), sicker patients (eg, higher rates of hospital complications 6.0% vs. 4.6%), but admitted fewer annually (7.1 vs. 19.3), compared with the highest quartile. CONCLUSIONS: Reentry into the health care system after PAC community discharge is common. Because of the distinct care needs of the PAC population there is a need for a quality measure that complements the current 30-day hospital readmission outcome and captures the objectives of PAC rehabilitation.

Attitudes Toward Computer Interventions for Partner Abuse and Drug Use Among Women in the Emergency Department.

BACKGROUND: Drug use and partner abuse often coexist among women presenting to the emergency department (ED). Technology offers one solution to the limited time and expertise available to address these problems. AIMS: The aims of this study were to explore womens' attitudes about use of computers for screening and intervening in drug use and partner abuse. METHODS: Seventeen adult women with recent histories of partner abuse and drug use were recruited from an urban ED to participate in one-on-one semi-structured interviews. A coding classification scheme was developed and applied to the transcripts by two independent coders. The research team collaboratively decided upon a thematic framework and selected illustrative quotes. RESULTS: Most participants used computers and/or mobile phones frequently and reported high self-efficacy with them. Women described emotional difficulty and shame around partner abuse experiences and drug use; however, they felt that reporting drug use and partner abuse was easier and safer through a computer than face-to-face with a person, and that advice from a computer about drug use or partner abuse was acceptable and accessible. Some had very positive experiences completing screening assessments. However, participants were skeptical of a computer's ability to give empathy, emotional support or meaningful feedback. The ED was felt to be an appropriate venue for such programs, as long as they were private and did not supersede clinical care. CONCLUSIONS: Women with partner abuse and drug use histories were receptive to computerized screening and advice, while still expressing a need for the empathy and compassion of a human interaction within an intervention.

Professional development and exposure to geriatrics: medical student perspectives from narrative journals.

Teaching professionalism is an important goal in American medical education. With the aging of the U.S. population, it is critical to understand how medical students develop professional behaviors when caring for older adults. Exposure to geriatrics and older patients can enhance students' professional development with patients of all ages and across different specialties. Medical students learn explicit and implicit messages during their education. In addition to helping to evaluate curricula, reflective journaling encourages individual development and helps in revealing how medical students become professionals. In this study, medical student volunteers described their responses to new geriatrics content in their curriculum, encounters with older patients in clinical settings, and their evolving physician identities. Multidisciplinary team analysis elicited 10 themes regarding: evaluation of geriatrics within the curriculum, recognition of geriatrics principles, and attitudes regarding aging and professional development over time. This article focuses on the impact of geriatrics exposure on students' professional development, revealing ways that students think about professionalism and older patients. Medical educators should consider journaling to help foster and gauge students' professional development.

Association between results of an amyloid PET scan and healthcare utilization in individuals with cognitive impairment.

BACKGROUND: The Imaging Dementia Evidence for Amyloid Scanning (IDEAS) study reports that amyloid PET scans help providers diagnose and manage Alzheimer's disease and related dementias (ADRD). Using CARE-IDEAS, an IDEAS supplemental study, we examined the association between amyloid PET scan result (elevated or non-elevated amyloid), patient characteristics, and participant healthcare utilization. METHODS: We linked respondents in CARE-IDEAS study to their Medicare fee-for-service records (n = 1333). We examined participants' cognitive impairment-related, outpatient, emergency department (ED), and inpatient encounters in the year before compared with the 2 years after the amyloid PET scan. RESULTS: Individuals with a non-elevated amyloid scan had more healthcare encounters throughout the overall study period than those with an elevated amyloid scan. Regardless of the amyloid scan result, cognitive impairment-related and outpatient encounters overall decreased, but ED and inpatient encounters increased in the 2 years after the scan compared with the year prior. There was minimal evidence of differences in healthcare utilization between participants with an elevated and non-elevated amyloid scan. CONCLUSIONS: There is no difference in change in healthcare utilization between people with scans showing elevated and non-elevated beta-amyloid.

Beta amyloid PET scans for dementia diagnoses: Practice and research implications from CARE-IDEAS.

Beta amyloid PET scans are a minimally invasive biomarker that may inform Alzheimer's disease (AD) diagnosis. The Caregiver's Reactions and Experience (CARE) study, an IDEAS supplement, aimed to understand experiences of PET scan recipients and their care partners regarding motivations for scans, reporting and interpreting results, and impact of results. Patients with mild cognitive impairment or dementia who agreed to join the CARE-IDEAS study and their care partners participated in a baseline survey and follow-up survey approximately 18 months later, supplemented by in-depth qualitative interviews with subsets of participants. Patients who received scans and volunteered for follow-up research were more likely to be male, better educated, and have higher income than the general population. Survey information was merged with Medicare data. This article integrates findings from several CARE-IDEAS publications and provides implications for practice and research. Although most participants accurately reported scan results, they were often confused about their meaning for prognosis. Some participants reported distress with results, but there were no significant changes in measured depression, burden, or economic strain over time. Many respondents desired more information about prognosis and supportive resources. Scan results were not differentially associated with changes in service use over time. Findings suggest a need for carefully designed and tested tools for clinicians to discuss risks and benefits of scans and their results, and resources to support patients and care partners in subsequent planning. Learning of scan results provides a point-of-contact that should be leveraged to facilitate shared decision-making and person-centered longitudinal AD care.

Elevated Amyloid-ß PET Scan and Cognitive and Functional Decline in Mild Cognitive Impairment and Dementia of Uncertain Etiology.

BACKGROUND: Elevated amyloid-ß (Aß) on positron emission tomography (PET) scan is used to aid diagnosis of Alzheimer's disease (AD), but many prior studies have focused on patients with a typical AD phenotype such as amnestic mild cognitive impairment (MCI). Little is known about whether elevated Aß on PET scan predicts rate of cognitive and functional decline among those with MCI or dementia that is clinically less typical of early AD, thus leading to etiologic uncertainty. OBJECTIVE: We aimed to investigate whether elevated Aß on PET scan predicts cognitive and functional decline over an 18-month period in those with MCI or dementia of uncertain etiology. METHODS: In 1,028 individuals with MCI or dementia of uncertain etiology, we evaluated the association between elevated Aß on PET scan and change on a telephone cognitive status measure administered to the participant and change in everyday function as reported by their care partner. RESULTS: Individuals with either MCI or dementia and elevated Aß (66.6% of the sample) showed greater cognitive decline compared to those without elevated Aß on PET scan, whose cognition was relatively stable over 18 months. Those with either MCI or dementia and elevated Aß were also reported to have greater functional decline compared to those without elevated Aß, even though the latter group showed significant care partner-reported functional decline over time. CONCLUSIONS: Elevated Aß on PET scan can be helpful in predicting rates of both cognitive and functional decline, even among cognitively impaired individuals with atypical presentations of AD.

Preparing to care for an aging population: medical student reflections on their clinical mentors within a new geriatrics curriculum.

Reflective writing techniques such as journaling help provide insights into the process by which medical students are mentored and develop into practicing physicians. The authors sought to analyze medical students' journals regarding their mentored experiences within a new geriatrics curriculum at a U.S. medical school. Thirty preclinical and clinical medical student journalers participated in this project. The authors employed qualitative analytic techniques using an interdisciplinary team process. Three major themes emerged: (a) exposure to clinical mentors challenged medical students' preconceptions regarding older adults and geriatric medicine; (b) students learned new medical knowledge and techniques from observing their mentors; and (c) students provided positive and negative assessments of their mentors. Reflective journaling provides important insights into the process by which medical students draw upon mentored clinical experiences during their training. Such mentorship may be particularly relevant to promoting their interest in geriatrics.

Reactions to Amyloid PET Scan Results and Levels of Anxious and Depressive Symptoms: CARE IDEAS Study.

BACKGROUND AND OBJECTIVES: Few studies have examined care partners' reactions to their loved ones receiving amyloid-ß positron emission tomography (PET) scan results, which can be indicative of Alzheimer's disease. We explored care partners' reactions qualitatively, and checked the association of scan results and diagnostic category (dementia vs mild cognitive impairment [MCI]) with care partner anxious and depressive symptoms through quantitative analysis. RESEARCH DESIGN AND METHODS: Using data from 1,761 care partners in the Caregivers' Reactions and Experience, a supplemental study of the Imaging Dementia Evidence for Amyloid Scanning study, we applied an exploratory sequential mixed-methods design and examined the reactions of 196 care partners to receiving amyloid PET scan results through open-ended interview questions. Based on the qualitative content analysis, we hypothesized there would be an association of care partners' depressive (Patient Health Questionnaire-2) and anxious (6-item State-Trait Anxiety Inventory) symptoms with scan results and diagnostic category which we then tested with logistic regression models. RESULTS: Content analysis of open-ended responses suggests that when scan results follow the care partner's expectations, for example, elevated amyloid in persons with dementia, care partners report relief and gratitude for the information, rather than distress. Adjusted logistic regression models of survey responses support this finding, with significantly higher odds of anxiety, but not depressive symptoms, among care partners of persons with MCI versus dementia and elevated amyloid. DISCUSSION AND IMPLICATIONS: Care partners of persons with MCI reported distress and had higher odds of anxiety after receiving elevated amyloid PET scan results than care partners of persons with dementia. This has the potential to inform clinical practice through recommendations for mental health screening and referrals.

Improvise, Adapt & Overcome: Successful Surgery-Sparing Prosthetic Hip Infection Antibiotic Suppression During COVID-19 Crisis.

CASE: A 79-year-old active male presented during the first COVID-19 pandemic surgery moratorium with late Staphylococcus lugdunensis periprosthetic total hip arthroplasty infection. Due to the unprecedented circumstances, novel treatment of IV and oral antibiotic suppression was trialed without preceding surgical intervention. At latest follow-up, the patient has two-year revision-free survival with normalization of inflammatory markers and MRI findings, and resolution of clinical symptoms. CONCLUSION: We report a novel surgery-sparing treatment for periprosthetic hip infection. Judicious caution should be used in the application of similar therapies, as host and organism characteristics likely contributed substantially to the success of this case.

Prevalence and incidence of depressive symptoms and diagnosis of depression as associated with elevated amyloid among Medicare beneficiaries with cognitive impairment.

BACKGROUND: Depression and cognitive impairment commonly co-occur, and it has been hypothesized that the two share pathological processes. Our objective for this study was to determine the relationship between elevated ß-amyloid level and the prevalence and incidence of depressive symptoms and diagnosed depression over two years among fee-for-service Medicare beneficiaries with cognitive impairment. METHODS: We utilized data from the CARE-IDEAS cohort study (N = 2078) including two measures of depressive symptoms (PHQ-2) and administrative claims data to identify pre-scan and incident depression diagnosis in subsample of fee-for-service Medicare beneficiaries (N = 1443). We used descriptive statistics and Poisson regression models with robust covariance. RESULTS: Beneficiaries whose scan results indicated not-elevated ß-amyloid were significantly more likely to have been diagnosed with depression pre-scan (46.4 % vs. 33.1 %). There was no significant association between elevated amyloid and the incidence of depressive symptoms or diagnosed depression. LIMITATIONS: The sample was limited to Medicare beneficiaries with cognitive impairment. Race/ethnic composition and education levels were not representative of the general population and there was substantial loss to follow-up. Mixed depressive / anxious episodes were captured as diagnoses of depression, potentially overestimating depression in this population. CONCLUSIONS: There was a high prevalence and incidence of diagnosed depression in this cohort of Medicare beneficiaries, but the incidence of depressive symptoms and diagnosed depression was not associated with elevated ß-amyloid.

Health Care and Community-Based Organization Partnerships to Address Social Needs: Medicare Advantage Plan Representatives' Perspectives.

Payers and providers are increasingly being held accountable for the overall health of their populations and may choose to partner with community-based organizations (CBOs) to address members' social needs. This study examines the opportunities and challenges that health care entities, using Medicare Advantage (MA) plans as an example, encounter when forming these relationships. We conducted interviews with 38 representatives of 17 MA organizations, representing 65% of MA members nationally. Transcripts were qualitatively analyzed to understand overarching themes. Participants described qualities they look for in community partners, including an alignment of organizational missions and evidence of improved outcomes. Participants also described challenges in working with CBOs, including needing an evidence base for CBOs' services and an absence of organizational infrastructure. Results demonstrate areas where CBOs may target their efforts to appeal to payers and providers and reveal a need for health care entities to assist CBOs in acquiring skills necessary for partnerships.

"Now at least we have something to call it": Patient and care partner experiences receiving an amyloid PET scan.

BACKGROUND: The primary objective of this paper was to examine perspectives and experiences of individuals with cognitive impairment who received an amyloid PET scan and their care partners, with regard to the process, logistics, and decision-making associated with receiving an amyloid PET scan and its results. METHODS: Structured telephone interviews were conducted with 200 randomly sampled scan recipient/care partner dyads from the CARE IDEAS study. The audio-recorded, transcribed responses were analyzed using an inductive qualitative content analytic approach. RESULTS: Participating individuals and care partners described their experiences in seeking a diagnosis for memory issues, including decision-making and logistics involved with receiving an amyloid PET scan. Participants discussed the factors contributing to their decision to seek a diagnosis for their memory issues and their hopes and expectations in completing the scan. Participants also described the trajectory of this process, and although some described relatively straightforward trajectories, others described problems associated with identifying appropriate providers and coordinating care across numerous providers to obtain a diagnosis for their memory issues. Participants described an additional challenge of physicians attributing cognitive decline to normal aging, rather than signs of a neurodegenerative disorder. CONCLUSIONS: Findings shed light on the barriers and delays that individuals and care partners experience in connecting with physicians and obtaining a comprehensive evaluation for cognitive problems. Results from this study have implications for physicians who provide care to older adults, and specifically highlight the need for greater care coordination and clearer communication with and systems of referral for patients.

Amyloid-ß PET Scan Results Disclosure and Care-Partner Emotional Well-Being Over Time.

BACKGROUND: Diagnostic tests, such as amyloid-ß positron emission tomography (PET) scans, can increase appropriate therapeutic management for the underlying causes of cognitive decline. To evaluate the full utility of this diagnostic tool, information is needed on whether results from amyloid-ß PET scans influence care-partner outcomes. OBJECTIVE: This study examines the extent to which previous disclosure of elevated amyloid (suggestive of Alzheimer's disease (AD) etiology) versus not-elevated amyloid (not suggestive of AD etiology) is associated with changes in care-partner wellbeing. METHODS: The study used data derived from a national longitudinal survey of Medicare beneficiaries (n = 921) with mild cognitive impairment (MCI) or dementia and their care-partners. Care-partner wellbeing outcomes included depressive symptoms (PHQ-8), subjective burden (4-item Zarit burden score), and a 3-item measure of loneliness. Change was measured between 4 (Time 1) and 18 (Time 2) months after receiving the scan results. Adjusted linear regression models regressed change (Time 2-Time 1) in each outcome on scan result. RESULTS: Care-partners were primarily white, non-Hispanic, college-educated, and married to the care recipient. Elevated amyloid was not associated with statistically significant Time 1 differences in outcomes or with statistically significant changes in depressive symptoms 0.22 (-0.18, 0.61), subjective burden 0.36 (-0.01, 0.73), or loneliness 0.15 (-0.01, 0.32) for care-partners from one time point to another. CONCLUSION: Given advances in AD biomarker testing, future research in more diverse samples is needed to understand the influence of scan results on care-partner wellbeing across populations.

Integrating and evaluating geriatrics in medical school: a novel approach for the challenge.

Brown Medical School developed a comprehensive curriculum in which enriched aging content increased from 22 to 80 hours in preclerkship courses and was also added for clerkships, residencies, and nongeriatrician physicians. Innovative evaluation strategies are also described. Highlights include "treasure hunts" in the anatomy laboratory, a Scholarly Concentration in Aging, Schwartz Communication Sessions, a Website of aging-related materials, and a monthly column in the state medical journal. Evaluation includes "tracking" to compute the "dose" of aging content, and "journaling" and focus groups to evaluate students' responses. Integrating geriatrics across a broad range of courses and clinical experiences is feasible.

Front-line Nursing Home Staff Experiences During the COVID-19 Pandemic.

OBJECTIVE: The Coronavirus disease 2019 (COVID-19) pandemic is an unprecedented challenge for nursing homes, where staff have faced rapidly evolving circumstances to care for a vulnerable resident population. Our objective was to document the experiences of these front-line health care professionals during the pandemic. DESIGN: Electronic survey of long-term care staff. This report summarizes qualitative data from open-ended questions for the subset of respondents working in nursing homes. SETTING AND PARTICIPANTS: A total of 152 nursing home staff from 32 states, including direct-care staff and administrators. METHODS: From May 11 through June 4, 2020, we used social media and professional networks to disseminate an electronic survey with closed- and open-ended questions to a convenience sample of long-term care staff. Four investigators identified themes from qualitative responses for staff working in nursing homes. RESULTS: Respondents described ongoing constraints on testing and continued reliance on crisis standards for extended use and reuse of personal protective equipment. Administrators discussed the burden of tracking and implementing sometimes confusing or contradictory guidance from numerous agencies. Direct-care staff expressed fears of infecting themselves and their families, and expressed sincere empathy and concern for their residents. They described experiencing burnout due to increased workloads, staffing shortages, and the emotional burden of caring for residents facing significant isolation, illness, and death. Respondents cited the presence or lack of organizational communication and teamwork as important factors influencing their ability to work under challenging circumstances. They also described the demoralizing impact of negative media coverage of nursing homes, contrasting this with the heroic public recognition given to hospital staff. CONCLUSIONS AND IMPLICATIONS: Nursing home staff described working under complex and stressful circumstances during the COVID-19 pandemic. These challenges have added significant burden to an already strained and vulnerable workforce and are likely to contribute to increased burnout, turnover, and staff shortages in the long term.