High-Intensity Care for Nursing Home Residents with Severe Dementia Hospitalized at the End of Life: A Mixed Methods Study.

OBJECTIVE: For nursing home residents with severe dementia, high-intensity medical treatment offers little possibility of benefit but has the potential to cause significant distress. Nevertheless, mechanical ventilation and intensive care unit (ICU) transfers have increased in this population. We sought to understand how and why such care is occurring. DESIGN: Mixed methods study, with retrospective collection of qualitative and quantitative data. SETTING: Department of Veterans Affairs (VA) hospitals. METHODS: Using the Minimum Data Set, we identified veterans aged ≥65 years who had severe dementia, lived in nursing homes, and died in 2013. We selected those who underwent mechanical ventilation or ICU transfer in the last 30 days of life. We restricted our sample to patients receiving care at VA hospitals because these hospitals share an electronic medical record, from which we collected structured information and constructed detailed narratives of how medical decisions were made. We used qualitative content analysis to identify distinct paths to high-intensity treatment in these narratives. RESULTS: Among 163 veterans, 41 (25.2%) underwent mechanical ventilation or ICU transfer. Their median age was 85 (IQR, 80-94), 97.6% were male, and 67.5% were non-Hispanic white. More than a quarter had living wills declining some or all treatment. There were 5 paths to high-intensity care. The most common (18 of 41 patients) involved families who struggled with decisions. Other patients (15 of 41) received high-intensity care reflexively, before discussion with a surrogate. Four patients had families who advocated repeatedly for aggressive treatment, against clinical recommendations. In 2 cases, information about the patient's preferences was erroneous or unavailable. In 2 cases, there was difficulty identifying a surrogate. CONCLUSIONS AND IMPLICATIONS: Our findings highlight the role of surrogates' difficulty with decision making and of health system-level factors in end-of-life ICU transfers and mechanical ventilation among nursing home residents with severe dementia.

Diagnostic uncertainty and decision-making in home-based primary care: A qualitative study of antibiotic prescribing.

BACKGROUND: Evaluating infection in home-based primary care is challenging, and these challenges may impact antibiotic prescribing. A refined understanding of antibiotic decision-making in this setting can inform strategies to promote antibiotic stewardship. This study investigated antibiotic decision-making by exploring the perspectives of clinicians in home-based primary care. METHODS: Clinicians from the Department of Veterans Affairs Home-Based Primary Care Program were recruited. Semi-structured interviews were conducted from June 2022 through September 2022 using a discussion guide. Transcripts were analyzed using grounded theory. The constant comparative method was used to develop a coding structure and to identify themes. RESULTS: Theoretical saturation was reached after 22 clinicians (physicians, n = 7; physician assistants, n = 2, advanced practice registered nurses, n = 13) from 19 programs were interviewed. Mean age was 48.5 ± 9.3 years, 91% were female, and 59% had ≥6 years of experience in home-based primary care. Participants reported uncertainty about the diagnosis of infection due to the characteristics of homebound patients (atypical presentations of disease, presence of multiple chronic conditions, presence of cognitive impairment) and the challenges of delivering medical care in the home (limited access to diagnostic testing, suboptimal quality of microbiological specimens, barriers to establishing remote access to the electronic health record). When faced with diagnostic uncertainty about infection, participants described many factors that influenced the decision to prescribe antibiotics, including those that promoted prescribing (desire to avoid hospitalization, pressure from caregivers, unreliable plans for follow-up) and those that inhibited prescribing (perceptions of antibiotic-associated harms, willingness to trial non-pharmacological interventions first, presence of caregivers who were trusted by clinicians to monitor symptoms). CONCLUSIONS: Clinicians face the difficult task of balancing diagnostic uncertainty with many competing considerations during the treatment of infection in home-based primary care. Recognizing these issues provides insight into strategies to promote antibiotic stewardship in home care settings.

Rewriting the Story of Mid- and Late-Life Family Caregiving: Applying a Narrative Identity Framework.

Family caregivers of older people with health needs often provide long-term, intensive support. Caregivers are, in turn, shaped by these caregiving experiences. According to the narrative identity framework, self-narratives from lived experiences influence self-beliefs and behaviors. We assert that family caregiving experiences, filtered through individuals' memory systems as self-narratives, provide substantial scaffolding for navigating novel challenges in late life. Self-narratives from caregiving can guide positive self-beliefs and behaviors, leading to constructive health-focused outcomes, but they also have the potential to guide negative self-beliefs or behaviors, causing adverse consequences for navigating late-life health. We advocate for incorporating the narrative identity framework into existing caregiving stress models and for new programs of research that examine central mechanisms by which caregiving self-narratives guide self-beliefs and behavioral outcomes. To provide a foundation for this research, we outline 3 domains in which caregiving self-narratives may substantially influence health-related outcomes. This article concludes with recommendations for supporting family caregivers moving forward, highlighting narrative therapy interventions as innovative options for reducing the negative consequences of maladaptive caregiving self-narratives.

Personal Health Planning in Adult-Child Former Caregivers of Parents Living With Dementia.

PURPOSE: To examine how former caregivers for parents living with dementia engage in personal health planning. DESIGN: An inductive, qualitative study. SETTING: Virtual, audio-recorded, semi-structured interviews. PARTICIPANTS: Thirty-two midlife former primary caregivers for parents who died following advanced dementia 3 months to 3 years prior. METHOD: Participants responded to a series of open-ended interview prompts. Interview recordings were transcribed and evaluated by a trained, diverse team to generate Consensual Qualitative Research (CQR) domains and categories. RESULTS: Caregivers developed health planning outlooks (ie, mindsets regarding willingness and ability to engage in personal health planning) that guided health planning activities (ie, engaging in a healthy lifestyle, initiating cognitive/genetic testing, maintaining independence and aging in place, ensuring financial and legal security). An agentic outlook involved feeling capable of engaging in health planning activities and arose when caregivers witnessed the impact and feasibility of their parents' health planning. Anxiety-inducing and present-focused outlooks arose when caregivers faced barriers (eg, low self-efficacy, lack of social support, perception that parent's health planning did not enhance quality of life) and concluded that personal health planning would not be valuable or feasible. CONCLUSION: Caregiving for a parent living with dementia (PLWD) shapes former caregivers' personal health planning. Interventions should support former caregivers who have developed low self-efficacy or pessimistic views on healthy aging to support them in addressing health planning activities.

Development of REDCap-based architecture for a clinical decision support tool linked to the electronic health record for assessment of medication appropriateness.

Objective: To develop the architecture for a clinical decision support system (CDSS) linked to the electronic health record (EHR) using the tools provided by Research Electronic Data Capture (REDCap) to assess medication appropriateness in older adults with polypharmacy. Materials and Methods: The tools available in REDCap were used to create the architecture for replicating a previously developed stand-alone system while overcoming its limitations. Results: The architecture consists of data input forms, drug- and disease-mapper, rules engine, and report generator. The input forms integrate medication and health condition data from the EHR with patient assessment data. The rules engine evaluates medication appropriateness through rules built through a series of drop-down menus. The rules generate output, which are a set of recommendations to the clinician. Discussion and conclusion: This architecture successfully replicates the stand-alone CDSS while addressing its limitations. It is compatible with several EHRs, easily shared among the large community using REDCap, and readily modifiable.

Antimicrobial resistance in Escherichia coli and Klebsiella pneumoniae urine isolates from a national sample of home-based primary care patients with dementia.

Annual prevalences of antimicrobial resistance among urine isolates (3,913 Escherichia coli isolates and 1,736 Klebsiella pneumoniae isolates) from home-based primary care patients with dementia were high between 2014 and 2018 (ciprofloxacin, 18%-23% and 5%-7%, respectively; multidrug resistance, 9%-11% and 5%-6%, respectively). Multidrug resistance varied by region. Additional studies of antimicrobial resistance in home-care settings are needed.

"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia.

BACKGROUND: Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. METHOD: A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. RESULTS: Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner). CONCLUSIONS: Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.

Effect of Computer-Tailored Print Feedback, Motivational Interviewing, and Motivational Enhancement Therapy on Engagement in Advance Care Planning: A Randomized Clinical Trial.

Importance: There is a tension between clinician-led approaches to engagement in advance care planning (ACP), which are effective but resource-intensive, and self-administered tools, which are more easily disseminated but rely on ability and willingness to complete. Objective: To examine the efficacy of computer-tailored print feedback (CTPF), motivational interviewing (MI), and motivational enhancement therapy (MET) on completion of a set of ACP activities, each as compared with usual care. Design, Setting, and Participants: This randomized clinical trial was conducted from October 2017 to December 2020 via telephone contact with primary care patients at a single VA facility; 483 veterans aged 55 years or older were randomly selected from a list of patients with a primary care visit in the prior 12 months, with oversampling of women and people from minoritized racial and ethnic groups. Statistical analysis was performed from January to June 2022. Interventions: Mailed CTPF generated in response to a brief telephone assessment of readiness to engage in and attitudes toward ACP; MI, an interview exploring ambivalence to change and developing a change plan; and MET, MI plus print feedback, delivered by telephone at baseline, 2, and 4 months. Main Outcome and Measures: Self-reported completion of 4 ACP activities: communicating about views on quality vs quantity of life, assignment of a health care agent, completion of a living will, and submitting documents for inclusion in the electronic health record at 6 months. Results: The study included 483 persons, mean (SD) age 68.3 (8.0) years, 18.2% women and 31.1% who were people from minoritized racial and ethnic groups. Adjusting for age, education, race, gender, and baseline stage of change for each ACP, predicted probabilities for completing the ACP activities were: usual care 5.7% (95% CI, 2.8%-11.1%) for usual care, 17.7% (95% CI, 11.8%-25.9%; P = .003) for MET, 15.8% (95% CI, 10.2%-23.6%; P = .01) for MI, P = .01, and 10.0% (95% CI, 5.9%-16.7%; P = .18) for CTPF. Conclusions and Relevance: This randomized clinical trial found that a series of 3 MI and MET counseling sessions significantly increased the proportion of middle-aged and older veterans completing a set of ACP activities, while print feedback did not. These findings suggest the importance of clinical interaction for ACP engagement. Trial Registration: ClinicalTrials.gov Identifier: NCT03103828.

Emergency department care transition barriers: A qualitative study of care partners of older adults with cognitive impairment.

INTRODUCTION: After emergency department (ED) discharge, persons living with cognitive impairment (PLWCI) and their care partners are particularly at risk for adverse outcomes. We sought to identify the barriers experienced by care partners of PLWCI during ED discharge care transitions. METHODS: We conducted a qualitative study of 25 care partners of PLWCI discharged from four EDs. We used the validated 4AT and care partner-completed AD8 screening tools, respectively, to exclude care partners of older adults with concern for delirium and include care partners of older adults with cognitive impairment. We conducted recorded, semi-structured interviews using a standardized guide, and two team members coded and analyzed all professional transcriptions to identify emerging themes and representative quotations. RESULTS: Care partners' mean age was 56.7 years, 80% were female, and 24% identified as African American. We identified four major barriers regarding ED discharge care transitions among care partners of PLWCI: (1) unique care considerations while in the ED setting impact the perceived success of the care transition, (2) poor communication and lack of care partner engagement was a commonplace during the ED discharge process, (3) care partners experienced challenges and additional responsibilities when aiding during acute illness and recovery phases, and (4) navigating the health care system after an ED encounter was perceived as difficult by care partners. DISCUSSION: Our findings demonstrate critical barriers faced during ED discharge care transitions among care partners of PLWCI. Findings from this work may inform the development of novel care partner-reported outcome measures as well as ED discharge care transition interventions targeting care partners.

Prediction of physical functioning and general health status trajectories on mortality among persons with cognitive impairment.

BACKGROUND: The concern posed by the confluence of aging and cognitive impairment is growing in importance as the U.S. population rapidly ages. As such, we sought to examine the predictive power of physical functioning (PF) and general health status (GHS) trajectories on mortality outcomes among persons with cognitive impairment (PCIs). METHODS: We used group-based trajectory models to identify latent group memberships for PF trajectories in 1,641 PCIs and GHS trajectories in 2,021 PCIs from the National Health and Aging Trends Survey (2011-2018) and applied logistic regressions to predict mortality using these memberships controlling for individual characteristics. RESULTS: We identified six trajectory groups for PF and four groups for GHS. Trajectory group memberships for both outcomes significantly predicted mortality. For PF, group memberships largely captured the average levels over time, and worse trajectories (i.e., lower baselines and faster declines) were associated with higher odds of death. The highest mortality risk was associated with the group experiencing a sharp decline early in its PF trajectory, although its average level across time was not the lowest. For GHS, we observed two groups with comparable average levels across time, but the one with a convex-shape trajectory had much higher mortality risks compared to the one with a concave-shape trajectory. CONCLUSIONS: Our findings highlighted that health trajectories predicted mortality among PCIs, not only because of general levels but also because of the shapes of declines. Close monitoring health deterioration of PCIs is crucial to understand the health burden of this population and to make subsequent actions.

Giving up on the objective of providing goal-concordant care: Advance care planning for improving caregiver outcomes.

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.

Trajectories of physical functioning among US adults with cognitive impairment.

BACKGROUND: physical functioning impairment is common among persons with cognitive impairment, but little is known about physical functioning trajectories across the US population or how trajectories may differ among persons with dementia and mild cognitive impairment (MCI). OBJECTIVE: to examine trajectories of physical functioning among persons with MCI and dementia in the USA. DESIGN: we used data from the National Health and Aging Trends study (NHATS) 2011-18. Physical functioning was assessed using the NHATS Expanded Short Physical Performance Battery. PARTICIPANTS: the 661 individuals with MCI and 980 individuals with dementia were included in this study. METHODS: we applied group-based trajectory models to identify latent groups and estimate their trajectories. Multinomial logistic regressions were applied to examine relationships between sociodemographic and health characteristics and trajectory group memberships. RESULTS: both MCI- and dementia-specific trajectories differed at baseline levels and declined at varying rates across groups. Approximately, 78.43% of persons with MCI were in trajectories with a moderate rate of decline, with only 9.75% in a trajectory with good physical function and 11.82% with poor physical function without as much change over time. Among persons with dementia, approximately 81.4% experienced moderate or fast declines, and 18.52% with virtually no functional ability remained at this same low level. Worse physical functioning trajectories were found among persons who were females, Blacks, with at least four comorbidities, and among persons who had a low socioeconomic status. CONCLUSIONS: persons with both dementia and MCI experienced steady declines in physical functioning. Socioeconomically disadvantaged groups have worse physical functioning trajectories.

Primary care clinicians' use of deprescribing recommendations: A mixed-methods study.

OBJECTIVE: to explore the effects of a deprescribing intervention on primary care clinicians' medication-related communication. METHODS: A clinical decision support tool provided clinicians in the intervention group with an individualized report regarding potentially inappropriate medications (PIMs), deintensification of diabetes and/or hypertension treatment, and poor adherence/cognition. Participants included 113 Veterans aged ≥ 65 prescribed ≥ 7 medications and their primary care clinicians. Encounters were recorded and analyzed. RESULTS: Between 36% and 38% of intervention clinicians discussed PIMs and diabetes mellitus/hypertension deintensification and 94% discussed adherence. PIMs discussions referred to the report and prompted some medication changes. The diabetes mellitus/hypertension and adherence discussions were not prompted by the report but instead arose from enhanced medication reconciliation. Changes in diabetes mellitus/hypertension medications were not made out of overtreatment concerns. There was no deprescribing for nonadherence. Enhanced medication reconciliation also led to discussions about medications not in the report. CONCLUSION: An individualized report regarding medication appropriateness prompted clinicians to perform a more thorough medication reconciliation and discuss PIMs. It did not prompt chronic care deintensification or deprescribing to enhance adherence. PRACTICE IMPLICATIONS: Feedback reports can promote robust medication reconciliation in primary care. Changing clinician practice to achieve deprescribing in chronic disease management will be more challenging.

Perceived dementia risk and advance care planning among older adults.

BACKGROUND: Although advance care planning (ACP) is beneficial if dementia develops, and virtually all older adults are at risk for this disease, older adults do not consistently engage in ACP. Health behavior models have highlighted the importance of perceived susceptibility to medical conditions in motivating behavior. Following these models, we sought to determine how often older adults believe they are not at risk of developing dementia and to examine the association between perceived dementia risk and ACP participation. METHODS: We performed a cross-sectional study of community-dwelling adults without cognitive impairment, aged ≥65 years, who were interviewed for the Health and Retirement Study in 2016 and asked about their perceived dementia risk (n = 711). Perceived dementia risk was ascertained with this question: "on a scale of 0 to 100, what is the percent chance that you will develop dementia sometime in the future?" We used multivariable-adjusted logistic regression to evaluate the association between perceived risk (0% versus >0%) and completion of a living will, appointment of a durable power of attorney for healthcare decisions, and discussion of treatment preferences. RESULTS: Among respondents, 10.5% reported a perceived dementia risk of 0%. Perceived risk of 0% was associated with lower odds of completing a living will (OR 0.53; 95% CI, 0.30-0.93) and discussing treatment preferences (OR 0.51; 95% CI, 0.28-0.93) but not appointment of a durable power of attorney (OR 0.77; 95% CI, 0.42-1.39). Many respondents with perceived dementia risk >0% had not completed ACP activities, including a substantial minority of those with perceived risk >50%. CONCLUSIONS: Older adults with no perceived dementia risk are less likely to participate in several forms of ACP, but the fact that many older adults with high levels of perceived risk had not completed ACP activities suggests that efforts beyond raising risk awareness are needed to increase engagement.

Trajectories of General Health Status and Depressive Symptoms Among Persons With Cognitive Impairment in the United States.

ObjectivesTo identify and examine heterogeneous trajectories of general health status (GHS) and depressive symptoms (DS) among persons with cognitive impairment (PCIs). Methods: We use group-based trajectory models to study 2361 PCIs for GHS and 1927 PCIs for DS from the National Health and Aging Trends Survey 2011-2018, and apply multinomial logistic regressions to predict identified latent trajectory group memberships using individual characteristics. Results: For both GHS and DS, there were six groups of PCIs with distinct trajectories over a 7-year period. More than 40% PCIs experienced sharp declines in GHS, and 35.5% experienced persistently poor GHS. There was greater heterogeneity in DS trajectories with 55% PCIs experiencing improvement, 16.4% experiencing persistently high DS, and 30.5% experiencing deterioration. Discussion: The GHS trajectories illustrate the heavy burden of poor and declining health among PCIs. Further research is needed to understand the factors underlying stable or improving DS despite declining GHS.

Effect of the STAMP (Sharing and Talking About My Preferences) Intervention on Completing Multiple Advance Care Planning Activities in Ambulatory Care : A Cluster Randomized Controlled Trial.

BACKGROUND: Interventions with the potential for broad reach in ambulatory settings are necessary to achieve a life course approach to advance care planning. OBJECTIVE: To examine the effect of a computer-tailored, behavioral health model-based intervention on the engagement of adults in advance care planning recruited from ambulatory care settings. DESIGN: Cluster randomized controlled trial with participant-level analysis. (ClinicalTrials.gov: NCT03137459). SETTING: 10 pairs of primary and selected specialty care practices matched on patient sociodemographic information. PARTICIPANTS: English-speaking adults aged 55 years or older; 454 adults at practices randomly assigned to usual care and 455 at practices randomly assigned to intervention. INTERVENTION: Brief telephone or web-based assessment generating a mailed, individually tailored feedback report with a stage-matched brochure at baseline, 2 months, and 4 months. MEASUREMENTS: The primary outcome was completion of the following 4 advance care planning activities at 6 months: identifying and communicating with a trusted person about views on quality versus quantity of life, assignment of a health care agent, completion of a living will, and ensuring that the documents are in the medical record-assessed by a blinded interviewer. Secondary outcomes were completion of individual advance care planning activities. RESULTS: Participants were 64% women and 76% White. The mean age was 68.3 years (SD, 8.3). The predicted probability of completing all advance care planning activities in usual care sites was 8.2% (95% CI, 4.9% to 11.4%) versus 14.1% (CI, 11.0% to 17.2%) in intervention sites (adjusted risk difference, 5.2 percentage points [CI, 1.6 to 8.8 percentage points]). Prespecified subgroup analysis found no statistically significant interactions between the intervention and age, education, or race. LIMITATIONS: The study was done in a single region and excluded non-English speaking participants. No information was collected about nonparticipants. CONCLUSION: A brief, easily delivered, tailored print intervention increased participation in advance care planning in ambulatory care settings. PRIMARY FUNDING SOURCE: National Institute of Nursing Research and National Institute of Aging.

Engagement in Non-Medical End-of-Life Planning by Older Adults.

CONTEXT: While medical end-of-life planning has been well characterized, less is known about non-medical planning to prepare for the end of life. OBJECTIVES: To determine the prevalence of engagement in non-medical end-of-life (EOL) planning and its relationship to medical EOL planning. METHODS: Three hundred and four persons age 65 and older recruited from physician offices and a senior center were administered an in-person interview asking about participation in the following non-medical EOL planning behaviors: moving to a location with more help, teaching someone to do things around the house, purchasing long-term care insurance, telling someone the location of important documents, preparing a financial will, conveying wishes for funeral arrangements, purchasing a cemetery plot, and prepaying for a funeral. RESULTS: Prevalence of participation in the different non-medical EOL planning activities varied widely, from 8% for prepaying for a funeral to 84% for telling someone the location of important documents. There was little overlap in the factors associated with participation in each activity. Conveying wishes for funeral arrangements and completing a financial will were associated with completing a living will (OR 2.69, 95% CI 1.51, 4.78; OR 6.70, 95% CI 3.18, 14.15) and communication about quality versus quantity of life (OR 4.52, 95% CI 2.54, 8.04; OR 2.47, 95% CI 1.25, 4.86). CONCLUSION: There is variability in both the prevalence of and factors associated with engagement in non-medical EOL planning activities. The association of non-medical with medical planning activities supports the utility of programs assisting individuals with broad engagement in EOL planning.