Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care.

The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient's identity credentials-a "do-it-yourself" solution in conflict with a health systems' legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved-patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.

Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners' preparedness for the visit and opening a direct channel to express concerns about patients' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes' and potential for future implementation and dissemination.

Care partners and consumer health information technology: A framework to guide systems-level initiatives in support of digital health equity.

Introduction: Consumer-oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified. Methods: We assemble evidence and concepts from the literature describing interpersonal communication, relational coordination theory, and systems-thinking to develop an integrative framework describing the care partner's role in applied CHIT innovations. Our framework describes pathways through which systematic engagement of the care partner affects longitudinal work processes and multi-level outcomes relevant to Learning Health Systems. Results: Our framework is grounded in relational coordination, an emerging theory for understanding the dynamics of coordinating work that emphasizes role-based relationships and communication, and the Systems Engineering Initiative for Patient Safety (SEIPS) model. Cross-cutting work systems geared toward explicit and purposeful support of the care partner role through CHIT may advance work processes by promoting frequent, timely, accurate, problem-solving communication, reinforced by shared goals, shared knowledge, and mutual respect between patients, care partners, and care team. We further contend that systematic engagement of the care partner in longitudinal work processes exerts beneficial effects on care delivery experiences and efficiencies at both individual and organizational levels. We discuss the utility of our framework through the lens of an illustrative case study involving patient portal-mediated pre-visit agenda setting. Conclusions: Our framework can be used to guide applied embedded CHIT interventions that support the care partner role and bring value to Learning Health Systems through advancing digital health equity, improving user experiences, and driving efficiencies through improved coordination within complex work systems.

Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial.

CONTEXT: Advance care planning (ACP) is critical among primary care patients with cognitive impairment, but few interventions have tested ACP with this population. OBJECTIVE: Describe the development and evaluation of a tool for assessing ACP fidelity within the context of cognitive impairment, including inter-rater reliability, convergent validity, and overall fidelity using clinical trial data. DESIGN: SHARE is a multicomponent intervention inclusive of facilitated ACP conversations. From a two group, single blind, randomized controlled trial, recorded ACP conversations were rated for fidelity. 145 primary care patients and their care partners were randomized to receive the intervention. Participating patients were 80+ years, had a care partner, and indications of cognitive impairment. An ACP Fidelity Checklist was developed with three subscales: Meeting Set-Up; ACP Meeting Topics; and Communication Skills. Scores were converted to percentages (100% = perfect fidelity) with a target of ≥80% fidelity. A post-ACP meeting report completed by ACP facilitators was used to assess convergent validity of the checklist. Intra-class correlation (ICC) was to evaluate inter-rater reliability. RESULTS: ACP conversations averaged 33.6 minutes (SD = 14.1). The mean fidelity score across N = 91 rated meetings was 82.9%, with a range of 77.3%-90.6% for subscales. 63.7% of meetings achieved a rating of ≥80%. Cognitive function was positively associated with patient participation (rho = .59, P < 0.001). For checklist items, ICC scores ranged from 0.43-0.96. Post-ACP meeting form scores were correlated with the checklist Meeting Topics subscale (r = 0.36, P = 0.001). CONCLUSIONS: Assessing the fidelity of ACP conversations involving primary care patients living with cognitive impairment and their care partners is feasible.

The Annual Wellness Visit Health Risk Assessment: Potential of Patient Portal-Based Completion and Patient-Oriented Education and Support.

Background and Objectives: Patient portals are secure online platforms that allow patients to perform electronic health management tasks and engage in bidirectional information exchange with their care team. Some health systems administer Medicare Annual Wellness Visit (AWV) health risk assessments through the patient portal. Scalable opportunities from portal-based administration of risk assessments are not well understood. Our objective is 2-fold-to understand who receives vs misses an AWV and health risk assessment and explore who might be missed with portal-based administration. Research Design and Methods: This is an observational study of electronic medical record and patient portal data (10/03/2021-10/02/2022) for 12 756 primary care patients 66+ years from a large academic health system. Results: Two-thirds (n = 8420) of older primary care patients incurred an AWV; 81.0% of whom were active portal users. Older adults who were active portal users were more likely to incur AWV than those who were not, though portal use was high in both groups (81.0% with AWV vs 76.8% without; p < .001). Frequently affirmative health risk assessment categories included falls/balance concerns (44.2%), lack of a documented advanced directive (42.3%), sedentary behaviors (39.9%), and incontinence (35.1%). Mean number of portal messages over the 12-month observation period varied from 7.2 among older adults affirmative responses to concerns about safety at home to 13.8 for older adults who reported difficulty completing activities of daily living. Portal messaging varied more than 2-fold across affirmative health risk categories and were marginally higher with greater number affirmative (mean = 13.8 messages/year no risks; 19.6 messages/year 10+ risks). Discussion and Implications: Most older adults were active portal users-a group more likely to have incurred a billed AWV. Efforts to integrate AWV risk assessments in the patient portal may streamline administration and scalability for dissemination of tailored electronically mediated preventive care but must attend to equity issues.

Pharmacist-led telehealth deprescribing for people living with dementia and polypharmacy in primary care: A pilot study.

BACKGROUND: People living with dementia (PLWD) have complex medication regimens, exposing them to increased risk of harm. Pragmatic deprescribing strategies that align with patient-care partner goals are needed. METHODS: A pilot study of a pharmacist-led intervention to optimize medications with patient-care partner priorities, ran May 2021-2022 at two health systems. PLWD with ≥7 medications in primary care and a care partner were enrolled. After an introductory mailing, dyads were randomized to a pharmacist telehealth intervention immediately (intervention) or delayed by 3 months (control). Feasibility outcomes were enrollment, intervention completion, pharmacist time, and primary care provider (PCP) acceptance of recommendations. To refine pragmatic data collection protocols, we assessed the Medication Regimen Complexity Index (MRCI; primary efficacy outcome) and the Family Caregiver Medication Administration Hassles Scale (FCMAHS). RESULTS: 69 dyads enrolled; 27 of 34 (79%) randomized to intervention and 28 of 35 (80%) randomized to control completed the intervention. Most visits (93%) took more than 20 min and required multiple follow-up interactions (62%). PCPs responded to 82% of the pharmacists' first messages and agreed with 98% of recommendations. At 3 months, 22 (81%) patients in the intervention and 14 (50%) in the control had ≥1 medication discontinued; 21 (78%) and 12 (43%), respectively, had ≥1 new medication added. The mean number of medications decreased by 0.6 (3.4) in the intervention and 0.2 (1.7) in the control, reflecting a non-clinically meaningful 1.0 (±12.4) point reduction in the MRCI among intervention patients and a 1.2 (±12.9) point increase among control. FCMAHS scores decreased by 3.3 (±18.8) points in the intervention and 2.5 (±14.4) points in the control. CONCLUSION: Though complex, pharmacist-led telehealth deprescribing is feasible and may reduce medication burden in PLWD. To align with patient-care partner goals, pharmacists recommended deprescribing and prescribing. If scalable, such interventions may optimize goal-concordant care for PLWD.

Analysis of agreement between measures of subjective cognitive impairment and probable dementia in the National Health and Aging Trends Study.

BACKGROUND: Subjective cognitive impairment (SCI) measures in population-based surveys offer potential for dementia surveillance, yet their validation against established dementia measures is lacking. METHODS: We assessed agreement between SCI and a validated probable dementia algorithm in a random one-third sample (n = 1936) of participants in the 2012 National Health and Aging Trends Study (NHATS). RESULTS: SCI was more prevalent than probable dementia (12.2% vs 8.4%). Agreement between measures was 90.0% and of substantial strength. Misclassification rates were higher among older and less-educated subgroups due to higher prevalence of false-positive misclassification but did not vary by sex or race and ethnicity. DISCUSSION: SCI sensitivity (63.4%) and specificity (92.5%) against dementia were comparable with similar metrics for the NHATS probable dementia measure against the "gold-standard" Aging, Demographics, and Memory Study-based dementia criteria, implying that population-based surveys may afford cost-effective opportunities for dementia surveillance to assess risk and inform policy. HIGHLIGHTS: The prevalence of subjective cognitive impairment (SCI) is generally higher than that of a validated measure of probable dementia, particularly within the youngest age group, females, Whites, and persons with a college or higher degree. Percent agreement between SCI and a validated measure of probable dementia was 90.0% and of substantial strength (prevalence- and bias-adjusted kappa, 0.80). Agreement rates were higher in older and less-educated subgroups, driven by the higher prevalence of false-positive disagreement, but did not vary significantly by sex or race and ethnicity. SCI's overall sensitivity and specificity were 63.4% and 92.5%, respectively, against a validated measure of probable dementia, suggesting utility as a low-cost option for dementia surveillance. Heterogeneity in agreement quality across subpopulations warrants caution in its use for subgroup analyses.

Patient portal messages to support an age-friendly health system for persons with dementia.

BACKGROUND: Patient portal secure messaging can support age-friendly dementia care, yet little is known about care partner use of the portal and how message concerns relate to age-friendly issues. METHODS: We conducted a two-part observational study. We first assessed the feasibility of automating care partner identification from patient portal messages by developing and testing a natural language processing (NLP) rule-based classification system from portal messages of 1973 unique patients 65 and older. Second, two independent reviewers manually coded a randomly selected sample of portal messages for 987 persons with dementia to identify the frequency of expressed needs from the 4M domains of an Age-Friendly Health System (medications, mentation, mobility, and what matters). RESULTS: A total of 267 (13.53%) of 1973 messages sent from older adults' portal accounts were identified through manual coding as sent by a nonpatient author. The NLP model performance to identify nonpatient authors demonstrated an AUC of 0.90. Most messages sent from the accounts of persons with dementia contained content relevant to the 4Ms (60%, 601/987), with the breakdown as follows: medications-36% (357/987), mobility-10% (101/987), mentation-16% (153/987), and what matters (aligning care with specific health goals and care preferences)-21%, 207/987. CONCLUSIONS: Patient portal messaging offers an avenue to identify care partners and meet the informational needs of persons with dementia and their care partners.

The Changing Demography of Late-Life Family Caregiving: A Research Agenda to Understand Future Care Networks for an Aging U.S. Population.

Repeated claims that a dwindling supply of potential caregivers is creating a crisis in care for the U.S. aging population have not been well-grounded in empirical research. Concerns about the supply of family care do not adequately recognize factors that may modify the availability and willingness of family and friends to provide care to older persons in need of assistance or the increasing heterogeneity of the older population. In this paper, we set forth a framework that places family caregiving in the context of older adults' care needs, the alternatives available to them, and the outcomes of that care. We focus on care networks, rather than individuals, and discuss the demographic and social changes that may alter the formation of care networks in the future. Last, we identify research areas to prioritize in order to better support planning efforts to care for the aging U.S. population.

Emergency Department Length of Stay for Older Adults With Dementia.

STUDY OBJECTIVE: The emergency department (ED) poses unique challenges and risks to persons living with dementia. A longer ED length of stay is associated with the risk of death, delirium, and medication errors. We sought to determine whether ED length of stay differed by dementia status and trends in ED length of stay for persons living with dementia from 2014 to 2018 and whether persons living with dementia were at a higher risk for prolonged ED length of stay (defined as a length of stay > 90th percentile). METHODS: In this observational study, we used data from the Healthcare Cost and Utilization Project State Emergency Department Database from Massachusetts, Arkansas, Arizona, and Florida. We included ED visits resulting in discharge for adults aged ≥65 years from 2014 to 2018. We used inverse probability weighting to create comparable groups of visits on the basis of dementia status. We used generalized linear models to estimate the mean difference in ED length of stay on the basis of dementia status and logistic regression to determine the odds of prolonged ED length of stay. RESULTS: We included 1,039,497 ED visits (mean age: 83.5 years; 64% women; 78% White, 12% Hispanic). Compared with visits by persons without dementia, ED length of stay was 3.1 hours longer (95% confidence interval [CI] 3.0 to 3.3 hours) for persons living with dementia. Among the visits resulting in transfer, ED length of stay was on average 4.1 hours longer (95% CI 3.6 to 4.5 hours) for persons living with dementia. Visits by persons living with dementia were more likely to have a prolonged length of stay (risk difference 4.1%, 95% CI 3.9 to 4.4). CONCLUSION: ED visits were more than 3 hours longer for persons living with versus without dementia. Initiatives focused on optimizing ED care for persons living with dementia are needed.

Cost of U.S emergency department and inpatient visits for fall injuries in older adults.

BACKGROUND: Falls are a leading cause of injury and hospital readmissions in older adults. Understanding the distribution of acute treatment costs across inpatient and emergency department settings is critical for informed investment and evaluation of fall prevention efforts. METHODS: This study used the 2016-2018 National Inpatient Sample and National Emergency Department Sample. Annual treatment cost of fall injury among adults 65 years and older was estimated from charges, applying cost-to-charge and professional fee ratios. Weighted multivariable generalized linear models were used to separately estimate cost for inpatient and emergency department (ED) setting by injury type and individual demographic and health characteristics after adjusting for payer and hospital level characteristics. RESULTS: Older adults incurred an estimated 922,428 inpatient and 2.3 million ED visits annually due to falls with combined annual costs of $19.8 billion. Over half of inpatient visits for fall injury were for fracture. Notably, 23% of inpatient visits were for fractures other than hip fracture and 14% of inpatient visits were for multiple fractures with costs totaling $3.4 billion and $2.5 billion, respectively. Annual ED costs were driven by superficial injury totaling $1.5 billion. Cost of ED visits were higher for adults 85 years and older (adjusted cost ratio (aCR): 1.11, 95% Confidence Interval (CI)I: 1.11-1.12) and those with dementia (aCR: 1.14, 95% CI: 1.13-1.15). Higher inpatient and ED visit cost was also associated with high-energy falls and discharge to post-acute care. CONCLUSION: The study found that more than 3 million older adults in the United States seek hospital care for fall injuries annually, a major concern given increasing capacity strain on hospitals and EDs. The $20 billion in annual acute treatment costs attributed to fall injury indicate an urgent need to implement evidence-based fall prevention interventions and underscores the importance of newly launched ED-based fall prevention efforts and investments in geriatric emergency departments.

Patient Portal Use during Home Health Care at an Academic Health System.

OBJECTIVES: To characterize patient portal use among older adults receiving skilled home health (HH) care. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Older adults (aged ≥65 years) who received HH care from a large, academic health system between 2017 to 2022 (n = 8409 HH episodes provided to n = 4878 unique individuals). METHODS: We captured individual and HH episode characteristics from the electronic health record and identified specific types and dates of portal use for those with an active patient portal. We calculated the proportion of episodes in which patients engaged in specific patient portal activities (eg, viewing test results, managing appointments, sending messages). We used multivariable logistic regression to model the odds of engaging in each activity as a function of patient and episode characteristics, and charted the timing of patient portal activities across the 60-day HH episode. RESULTS: The patient portal was used by older adults in more than half (58%) of the episodes examined. Among those using their portal account during an HH episode, 84% viewed test results, 77% managed an existing appointment, 72% managed medications, and 55% sent a message to a provider. Adjusted odds of portal use were higher among HH patients who were married (aOR: 1.77, P < .001), receiving HH post-COVID pandemic (aOR: 2.73, P < .001), and accessing HH following a hospitalization (aOR: 1.30, P < .001) and lower among those who were Black compared with white (aOR: 0.52, P < .001). Portal use, particularly viewing test results and clinical notes and managing existing appointments, was highest during the first 10 days of an HH episode, especially among patients referred following a hospitalization. CONCLUSIONS AND IMPLICATIONS: HH patients use the patient portal to perform care management tasks and access clinical information. Study findings support opportunities to harness the patient portal to bridge information gaps and care coordination during HH care.

Evaluating the Safety of an Educational Deprescribing Intervention: Lessons from the Optimize Trial.

BACKGROUND: Patients, family members, and clinicians express concerns about potential adverse drug withdrawal events (ADWEs) following medication discontinuation or fears of upsetting a stable medical equilibrium as key barriers to deprescribing. Currently, there are limited methods to pragmatically assess the safety of deprescribing and ascertain ADWEs. We report the methods and results of safety monitoring for the OPTIMIZE trial of deprescribing education for patients, family members, and clinicians. METHODS: This was a pragmatic cluster randomized trial with multivariable Poisson regression comparing outcome rates between study arms. We conducted clinical record review and adjudication of sampled records to assess potential causal relationships between medication discontinuation and outcomes. This study included adults aged 65+ with dementia or mild cognitive impairment, one or more additional chronic conditions, and prescribed 5+ chronic medications. The intervention included an educational brochure on deprescribing that was mailed to patients prior to primary care visits, a clinician notification about individual brochure mailings, and an educational tip sheets was provided monthly to primary care clinicians. The outcomes of the safety monitoring were rates of hospitalizations and mortality during the 4 months following brochure mailings and results of record review and adjudication. The adjudication process was conducted throughout the trial and included classifications: likely, possibly, and unlikely. RESULTS: There was a total of 3012 (1433 intervention and 1579 control) participants. There were 420 total hospitalizations involving 269 (18.8%) people in the intervention versus 517 total hospitalizations involving 317 (20.1%) people in the control groups. Adjusted risk ratios comparing intervention to control groups were 0.92 [95% confidence interval (CI) 0.72, 1.16] for hospitalization and 1.19 (95% CI 0.67, 2.11) for mortality. Both groups had zero deaths "likely" attributed to a medication change prior to the event. A total of 3 out of 30 (10%) intervention group hospitalizations and 7 out of 35 (20%) control group hospitalizations were considered "likely" due to a medication change. CONCLUSIONS: Population-based deprescribing education is safe in the older adult population with cognitive impairment in our study. Pragmatic methods for safety monitoring are needed to further inform deprescribing interventions. TRIAL REGISTRATION: NCT03984396. Registered on 13 June 2019.

Profile of Older Dual-Enrollees Living in Areas with Managed Long-Term Services and Supports.

OBJECTIVES: Nearly half of all state Medicaid agencies in the United States have implemented managed long-term services and supports (MLTSS). Data gaps have inhibited our understanding of MLTSS experiences to date. We draw on a national survey with novel data linkages to develop a profile of older dual-enrollees with significant LTSS needs by MLTSS program presence. DESIGN: Cross-sectional observational study using the 2015 round of the National Health and Aging Trends Study (NHATS), a longitudinal study of a nationally representative sample of Medicare beneficiaries aged 65 years and older. SETTING AND PARTICIPANTS: The sample comprised 275 participants who self-reported Medicaid enrollment and met our definition of significant LTSS need as defined by receiving help with 2 or more self-care or mobility activities (eating, bathing, toileting, dressing, bed transfer, indoor mobility). METHODS: Bivariate analyses were used to comparatively examine differences in demographic, health, and care circumstances by MLTSS, as defined by living in a county with MLTSS program presence. RESULTS: Among approximately 1 million (weighted sample) older dual-enrollees with significant LTSS needs, 56.2% (weighted percentage) lived in counties with MLTSS and 43.7% lived in counties with mandatory MLTSS enrollment in 2015. Those living in areas with MLTSS were much more likely to be of Hispanic or other race and ethnicity (50.5% vs 15.1%, P < .001) yet less likely to live in a rural location (8.7% vs 31.4%, P < .05) or in a residential care facility or nursing home (18.4% vs 34.7%, P < .05). The majority (78.5%) received assistance from 2 or more helpers and received more than 70 hours of care per week. CONCLUSIONS AND IMPLICATIONS: Our findings reinforce the growing reach of MLTSS programs and importance of filling evidence gaps about who these programs are serving.

Caregiver-reported quality of communication in pancreatic and periampullary cancer.

BACKGROUND: Communication between caregivers and clinical team members is critical for transitional care, but its quality and potential impact on outcomes are not well understood. This study reports on caregiver-reported quality of communication with clinical team members in the postpancreatectomy period and examines associations of these reports with patient and caregiver outcomes. METHODS: Caregivers of patients with pancreatic and periampullary malignancies who had undergone pancreatectomy were surveyed. Instrument measures assessed care experiences using the Caregiver Perceptions About Communication with Clinical Team Members (CAPACITY) instrument. The instrument has two main subscales: communication, assessing the extent to which providers helped caregivers comprehend details of clinical visits, and capacity, defined as the extent to which providers assessed whether caregivers were able to care for patients. RESULTS: Of 265 caregivers who were approached, 240 (90.6%) enrolled in the study. The mean communication and capacity subscale scores were 2.7 ± 0.6 and 1.5 ± 0.6, respectively (range, 0-4 [higher = better]). Communication subscale scores were lower among caregivers of patients who experienced (vs. those who did not experience) a 30-day readmission (2.6 ± 0.5 vs. 2.8 ± 0.6, respectively; p = .047). Capacity subscale scores were inversely associated with restriction in patient daily activities (a 0.04 decrement in the capacity score for every 1 point in daily activity restriction; p = .008). CONCLUSIONS: After pancreatectomy, patients with pancreatic and periampullary cancer whose caregivers reported worse communication with care providers were more likely to experience readmission. Caregivers of patients with greater daily activity restrictions were less likely to report being asked about the caregiver's skill and capacity by clinicians. PLAIN LANGUAGE SUMMARY: This prospective study used a validated survey instrument and reports on the quality of communication between health care providers and caregivers as reported by caregivers of patients with pancreatic and periampullary cancer after pancreatectomy. In an analysis of 240 caregivers enrolled in the study, lower communication scores (the extent to which providers helped caregivers understand clinical details) were associated with higher odds of 30-day patient readmission to the hospital. In addition, lower capacity scores (the extent to which providers assessed caregivers' ability to care for patients) were associated with greater impairment in caregivers. The strikingly low communication quality and capacity assessment scores suggest substantial room for improvement, with the potential to improve both caregiver and patient outcomes.

Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement.

BACKGROUND: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited. OBJECTIVE: We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. METHODS: In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs. RESULTS: Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits. CONCLUSIONS: Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.

"Caregiving is teamwork " Information sharing in home care for older adults with disabilities living in the community.

AIM: We examined information sharing between direct care workers, family caregivers, and clinicians involved in the care of older adults with disabilities. METHODS: Semi-structured interviews with N = 11 representatives of home care agencies ("residential service agencies" in Maryland). RESULTS: Work system and process characteristics relevant to information sharing included: (1) using electronic management systems and patient portals to communicate within agencies and with clinicians, (2) implementing tools to gather information about client goals, preferences, and routines, and (3) relying on family members for information about clients' needs. Participants did not report differences in dementia-related care coordination; however, dementia-related adaptations involved additional considerations for navigating relationships with family and standardizing processes to communicate with clinicians. CONCLUSION: Findings highlight care demands experienced by direct care workers and support calls to better coordinate information sharing between interdisciplinary care teams.

Dementia and Hearing Aid Use and Cessation: A National Study.

PURPOSE: The current standard for management of hearing loss in the United States involves the use of a hearing aid. Anecdotal evidence suggests that the use of a hearing aid may be less effective in the context of dementia, though national data on use and cessation are not described. METHOD: This longitudinal analysis of the National Health and Aging Trends Study followed participants who self-reported hearing aid use to estimate risk of hearing aid cessation over 9 years. We examine whether hearing aid cessation differs by dementia status using generalized estimating equations logistic regression accounting for loss to follow-up. Supplemental analyses were undertaken to examine the contribution of caregiving and environmental factors on hearing aid cessation. RESULTS: Of 1,310 older adults who reported hearing loss (25% 80-84 years, 51% women, 74% White), 22% with dementia and 57% baseline hearing aid use. Dementia increased likelihood of ceasing hearing aid use during the first year after adoption (OR = 2.07, 95% CI [1.33, 3.23], p interaction = .11). In later years, older adults with either a previous or recent diagnosis of dementia had a 95% higher odds of hearing aid cessation (OR = 1.95, 95% CI [1.31, 2.90]), a decrease in odds with respect to the first year after adoption, when compared to participants without dementia, after adjusting for demographic, health, and economic factors. Economic and social factors that may influence care demands (more caregivers, income-to-poverty ratio, and additional insurance) increased likelihood for cessation for those with dementia. CONCLUSIONS: Older adults with (vs. without) dementia are more likely to cease hearing aid use over time, most notably during the first year after adoption. Strategies to support hearing ability, such as self-management or care partner education, may improve communication for those living with co-occurring hearing loss and dementia.