"Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners.

BACKGROUND AND OBJECTIVES: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting. RESEARCH DESIGN AND METHODS: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience. Interviews explored challenges related to social lives and were analyzed thematically. RESULTS: Persons with dementia were on average 80 years old (range: 67-94), 38% female, and 78% diagnosed with Alzheimer's dementia; care partners were on average 67 years old (range: 40-87) and 69% female. We identified 3 primary themes. First, dyads lost external social networks due to complex factors, including discomfort of surrounding social networks, caregiving responsibilities, and progressive cognitive deficits. Second, care partners described disruptions of meaningful dyadic relationships due to progressive cognitive and functional deficits, leading to loneliness and anticipatory grief. Third, adaptive strategies centered on care partners facilitating shared social activities and programs addressing caregiver burden. An overarching theme of disease-course accumulation of barriers to social interactions and constant adaptations was present in all themes. DISCUSSION AND IMPLICATIONS: Isolation and loneliness are a shared experience and source of distress for persons with dementia and care partners. Results can inform interventions tailored to individual needs and disease stages of dyads that enhance social connectedness.

Long-term cognitive outcome after elective hip or knee total joint arthroplasty: A population-based observational study.

BACKGROUND: One year after elective hip or knee total joint arthroplasty (TJA), >30% of older adults meet criteria for postoperative neurocognitive disorder. However, this is not contextualized with long-term cognitive outcomes in comparable surgical and nonsurgical controls. We analyzed population-based data to compare long-term cognitive outcomes in older adults after TJA, other surgeries, and with and without arthritis pain. METHODS: This was a retrospective observational analysis of United States older adults in the Health and Retirement Study (HRS) who underwent elective TJA, or elective surgery without expected functional benefits (e.g., cholecystectomy; inguinal herniorrhaphy), between 1998 and 2018 at aged 65 or older. TJA recipients were also age- and sex-matched to nonsurgical controls who reported moderate-severe arthritic pain or denied pain, so that comparison groups included surgical and nonsurgical (pain-suffering and pain-free) controls. We modeled biennially-assessed memory performance, a measure of direct and proxy cognitive assessments, before and after surgery, normalized to the rate of memory decline ("cognitive aging") in controls to express effect size estimates as excess, or fewer, months of memory decline. We used linear mixed effects models adjusted for preoperative health and demographic factors, including frailty, flexibly capturing time before/after surgery (knots at -4, 0, 8 years; discontinuity at surgery). RESULTS: There were 1947 TJA recipients (average age 74; 63% women; 1358 knee, 589 hip) and 1631 surgical controls (average age 76; 38% women). Memory decline 3 years after TJA was similar to surgical controls (5.2 [95% confidence interval, CI -1.2 to 11.5] months less memory decline in the TJA group, p = 0.11) and nonsurgical controls. At 5 years, TJA recipients experienced 5.0 [95% CI -0.9 to 10.9] months less memory decline than arthritic pain nonsurgical controls. CONCLUSION: There is no systematic accelerated memory decline at 3 years after TJA compared with surgical or nonsurgical controls.

Development and External Validation of Models to Predict Need for Nursing Home Level of Care in Community-Dwelling Older Adults With Dementia.

Importance: Most older adults living with dementia ultimately need nursing home level of care (NHLOC). Objective: To develop models to predict need for NHLOC among older adults with probable dementia using self-report and proxy reports to aid patients and family with planning and care management. Design, Setting, and Participants: This prognostic study included data from 1998 to 2016 from the Health and Retirement Study (development cohort) and from 2011 to 2019 from the National Health and Aging Trends Study (validation cohort). Participants were community-dwelling adults 65 years and older with probable dementia. Data analysis was conducted between January 2022 and October 2023. Exposures: Candidate predictors included demographics, behavioral/health factors, functional measures, and chronic conditions. Main Outcomes and Measures: The primary outcome was need for NHLOC defined as (1) 3 or more activities of daily living (ADL) dependencies, (2) 2 or more ADL dependencies and presence of wandering/need for supervision, or (3) needing help with eating. A Weibull survival model incorporating interval censoring and competing risk of death was used. Imputation-stable variable selection was used to develop 2 models: one using proxy responses and another using self-responses. Model performance was assessed by discrimination (integrated area under the receiver operating characteristic curve [iAUC]) and calibration (calibration plots). Results: Of 3327 participants with probable dementia in the Health and Retirement Study, the mean (SD) age was 82.4 (7.4) years and 2301 (survey-weighted 70%) were female. At the end of follow-up, 2107 participants (63.3%) were classified as needing NHLOC. Predictors for both final models included age, baseline ADL and instrumental ADL dependencies, and driving status. The proxy model added body mass index and falls history. The self-respondent model added female sex, incontinence, and date recall. Optimism-corrected iAUC after bootstrap internal validation was 0.72 (95% CI, 0.70-0.75) in the proxy model and 0.64 (95% CI, 0.62-0.66) in the self-respondent model. On external validation in the National Health and Aging Trends Study (n = 1712), iAUC in the proxy and self-respondent models was 0.66 (95% CI, 0.61-0.70) and 0.64 (95% CI, 0.62-0.67), respectively. There was excellent calibration across the range of predicted risk. Conclusions and Relevance: This prognostic study showed that relatively simple models using self-report or proxy responses can predict need for NHLOC in community-dwelling older adults with probable dementia with moderate discrimination and excellent calibration. These estimates may help guide discussions with patients and families in future care planning.

Chronic Pain and Pain Management in Older Adults: Protocol and Pilot Results.

BACKGROUND: Chronic pain occurs in 30% of older adults. This prevalence rate is expected to increase, given the growth in the older adult population and the associated growth of chronic conditions contributing to pain. No population-based studies have provided detailed, longitudinal information on the experience of chronic pain in older adults; the pharmacological and nonpharmacological strategies that older adults use to manage their chronic pain; and the effect of chronic pain on patient-reported outcomes. OBJECTIVES: This article aims to describe the protocol for a population-based, longitudinal study focused on understanding the experience of chronic pain in older adults. The objectives are to determine the prevalence and characteristics of chronic pain; identify the pharmacological and nonpharmacological pain treatments used; evaluate for longitudinal differences in biopsychosocial factors; and examine how pain types and pain trajectories affect important patient-reported outcomes. Also included are the results of a pilot study. METHODS: A population-based sample of approximately 1,888 older adults will be recruited from the National Opinion Research Center at the University of Chicago's AmeriSpeak Panel to complete surveys at three waves: enrollment (Wave 1), 6 months (Wave 2), and 12 months (Wave 3). To determine the feasibility, a pilot test of the enrollment survey was conducted among 123 older adults. RESULTS: In the pilot study, older adults with chronic pain reported a range of pain conditions, with osteoarthritis being the most common. Participants reported an array of pharmacological and nonpharmacological pain strategies. Compared to participants without chronic pain, those with chronic pain reported lower physical and cognitive function and poorer quality of life. Data collection for the primary, longitudinal study is ongoing. DISCUSSION: This project will be the first longitudinal population-based study to examine the experience and overall effect of chronic pain in older adults. Pilot study results provide evidence of the feasibility of study methods. Ultimately, this work will inform the development of tailored interventions for older patients targeted to decrease pain and improve function and quality of life.

Music engagement as part of everyday life in dementia caregiving relationships at home.

BACKGROUND AND OBJECTIVES: Emerging evidence suggests music-based interventions can improve well-being for people living with dementia, but little is known about the ways in which music might support dementia caregiving relationships as part of everyday life at home. This study examined music engagement in the context of daily life to identify patterns of music engagement and potential targets for the design of music-based interventions to support well-being. RESEARCH DESIGN AND METHODS: This ethnographic, in-home study of people living with dementia and their family and professional care partners used methods from ethnomusicology, including semi-structured interviews and in-home participant-observation with a focus on music engagement. RESULTS: 21 dyads were purposively recruited for diversity in terms of gender, ethnicity/race/heritage, caregiving relationship and music experiences. Despite participants' diverse music preferences, three distinct music engagement patterns emerged. 1) Professional care partners intentionally integrated music listening and singing into daily life as part of providing direct care. 2) Family care partners, who had prior dementia care nursing experience or family music traditions, integrated music into daily life in ways that supported their personal relationships. 3) In contrast, family care partners, who lacked dementia care experience and had high levels of caregiver burden, disengaged from prior music-making. DISCUSSION AND IMPLICATIONS: The distinct music engagement patterns reflect different needs on the part of dyads. It is important to continue to support dyads who engage in music daily, and to consider developing music-based interventions to support well-being among dyads who have become disengaged from music.

Around the EQUATOR with Clin-STAR: Prediction modeling opportunities and challenges in aging research.

The 2015 Transparent Reporting of a multivariable prediction model for Individual Prognosis Or Diagnosis (TRIPOD) Statement was published to improve reporting transparency for prediction modeling studies. The objective of this review is to highlight methodologic challenges that aging-focused researchers will encounter when designing and reporting studies involving prediction models for older adults and provide guidance for addressing these challenges. In following the 22-item TRIPOD checklist, researchers must consider the representativeness of cohorts used (e.g., whether older adults with frailty, cognitive impairment, and social isolation were included), strategies for incorporating common geriatric predictors (e.g., age, comorbidities, functional status, and frailty), methods for handling missing data and competing risk of death, and assessment of model performance heterogeneity across important subgroups (e.g., age, sex, race, and ethnicity). We provide guidance to help aging-focused researchers develop, validate, and report models that can inform and improve patient care, which we label "TRIPOD-65."

The Natural History of Disability and Caregiving Before and After Long-Term Care Entry.

Importance: Many older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown. Objective: To quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants. Design, Setting, and Participants: A longitudinal cohort study using prospectively collected annual data from the National Health and Aging Trends Study from 2011 to 2020 including participants in the continental US. Overall, 932 community-dwelling Medicare beneficiaries entering LTCF from 2011 to 2019 were included. Entry into LTCF was set as t = 0, and participant interviews from 4 years before and 2 years after were used. Main Outcomes and Measures: Prevalence of severe disability (severe difficulty or dependence in ≥3 activities of daily living), prevalence of caregivers, and median weekly caregiving hours per entrant, using weighted mixed-effects regression against time as linear spline. Results: At entry, mean (SD) age was 84 (8.4) years, 609 (64%, all percentages survey weighted) were women, 143 (6%) were Black, 29 (3%) were Hispanic, 30 (4%) were other (other race and ethnicity included American Indian, Asian, Native Hawaiian, and other), and 497 (49%) had dementia. 349 (34%) entered NH, 426 (45%) entered AL, and 157 (21%) entered IL. Overall, NH and AL entry were preceded by months of severe disability and escalating caregiving. Before entry, 49% (95% CI, 29%-68%) of NH entrants and 10% (95% CI, 3%-24%) of AL entrants had severe disability. Most (>97%) had at least a caregiver, but only one-third (NH, 33%; 95% CI, 20%-50%; AL, 33%; 95% CI, 24%-44%) had a paid caregiver. Median care was 27 hours weekly (95% CI, 18-40) in NH entrants and 18 (95% CI, 14-24) in AL entrants. On NH and AL entry, severe disability rose to 89% (95% CI, 82%-94%) and 28% (95% CI, 16%-44%) on NH and AL entry and was 66% (95% CI, 55%-75%) 2 years after entry in AL residents. Few IL entrants (<2%) had severe disability and their median care remained less than 7 hours weekly before and after entry. Conclusions: This study found that persons often enter NHs and ALs after months of severe disability and substantial help at home, usually from unpaid caregivers. Assisted living residents move when less disabled, but approach levels of disability similar to NH entrants within 2 years. Data may help clinicians understand when home supports approach a breaking point.

Negativity and Positivity in the ICU: Exploratory Development of Automated Sentiment Capture in the Electronic Health Record.

OBJECTIVES: To develop proof-of-concept algorithms using alternative approaches to capture provider sentiment in ICU notes. DESIGN: Retrospective observational cohort study. SETTING: The Multiparameter Intelligent Monitoring of Intensive Care III (MIMIC-III) and the University of California, San Francisco (UCSF) deidentified notes databases. PATIENTS: Adult (≥18 yr old) patients admitted to the ICU. MEASUREMENTS AND MAIN RESULTS: We developed two sentiment models: 1) a keywords-based approach using a consensus-based clinical sentiment lexicon comprised of 72 positive and 103 negative phrases, including negations and 2) a Decoding-enhanced Bidirectional Encoder Representations from Transformers with disentangled attention-v3-based deep learning model (keywords-independent) trained on clinical sentiment labels. We applied the models to 198,944 notes across 52,997 ICU admissions in the MIMIC-III database. Analyses were replicated on an external sample of patients admitted to a UCSF ICU from 2018 to 2019. We also labeled sentiment in 1,493 note fragments and compared the predictive accuracy of our tools to three popular sentiment classifiers. Clinical sentiment terms were found in 99% of patient visits across 88% of notes. Our two sentiment tools were substantially more predictive (Spearman correlations of 0.62-0.84, p values < 0.00001) of labeled sentiment compared with general language algorithms (0.28-0.46). CONCLUSION: Our exploratory healthcare-specific sentiment models can more accurately detect positivity and negativity in clinical notes compared with general sentiment tools not designed for clinical usage.

The Role of Digital Technologies in Facilitating Psychosocial Resilience to Sudden Social Isolation Among Older Adults: Lessons Learned from the COVID-19 Pandemic.

This study investigated how older adults adopted new technologies in response to sudden social isolation caused by the COVID-19 pandemic and how this adoption was related to their long-term psychosocial well-being. The study involved a 6-month longitudinal survey of 151 older adults and two phone-based focus groups, which informed a semi-structured interview guide and purposive sampling of diverse community-dwelling older adults. We then conducted twenty qualitative interviews and thematic analysis and mapped themes to 6-month quantitative trajectories of psychosocial health. Three themes emerged: first, most participants adopted multiple technologies to maintain social connection and psychosocial well-being. Second, participants felt left behind by certain technologies due to complicated systems or ageist societal norms. Third, pandemic-related community resources promoted technology independence among isolated older adults and those wanting to avoid "burdening" family. Results challenge ageist stereotypes and provide a framework for encouraging access and comfort with multiple technologies to adapt to sudden health crises or disruptive events.

Triage Procedures for Critical Care Resource Allocation During Scarcity.

Importance: During the COVID-19 pandemic, many US states issued or revised pandemic preparedness plans guiding allocation of critical care resources during crises. State plans vary in the factors used to triage patients and have faced criticism from advocacy groups due to the potential for discrimination. Objective: To analyze the role of comorbidities and long-term prognosis in state triage procedures. Design, Setting, and Participants: This cross-sectional study used data gathered from parallel internet searches for state-endorsed pandemic preparedness plans for the 50 US states, District of Columbia, and Puerto Rico (hereafter referred to as states), which were conducted between November 25, 2021, and June 16, 2023. Plans available on June 16, 2023, that provided step-by-step instructions for triaging critically ill patients were categorized for use of comorbidities and prognostication. Main Outcomes and Measures: Prevalence and contents of lists of comorbidities and their stated function in triage and instructions to predict duration of postdischarge survival. Results: Overall, 32 state-promulgated pandemic preparedness plans included triage procedures specific enough to guide triage in clinical practice. Twenty of these (63%) included lists of comorbidities that excluded (11 of 20 [55%]) or deprioritized (8 of 20 [40%]) patients during triage; one state's list was formulated to resolve ties between patients with equal triage scores. Most states with triage procedures (21 of 32 [66%]) considered predicted survival beyond hospital discharge. These states proposed different prognostic time horizons; 15 of 21 (71%) were numeric (ranging from 6 months to 5 years after hospital discharge), with the remaining 6 (29%) using descriptive terms, such as long-term. Conclusions and Relevance: In this cross-sectional study of state-promulgated critical care triage policies, most plans restricted access to scarce critical care resources for patients with listed comorbidities and/or for patients with less-than-average expected postdischarge survival. This analysis raises concerns about access to care during a public health crisis for populations with high burdens of chronic illness, such as individuals with disabilities and minoritized racial and ethnic groups.

Disparities in advance care planning among older US immigrants.

BACKGROUND: Despite known racial disparities in advance care planning (ACP), little is known about ACP disparities experienced by US immigrants. METHODS: We used data from the 2016 wave of the Health and Retirement Study. We defined ACP engagement as self-reported end-of-life (EOL) discussions, designation of a power of attorney (DPOA), documented living will, or "any" of the three behaviors. Immigration status was determined by respondent-reported birth outside the United States. Time in the United States was calculated by subtracting the year of arrival in the United States from the survey year of 2016. We used multivariable logistic regression to estimate the association between ACP engagement and immigration status and the relationship of acculturation to ACP engagement, adjusting for sociodemographics, religiosity, and life expectancy. RESULTS: Of the total cohort (N = 9928), 10% were immigrants; 45% of immigrants identified as Hispanic. After adjustment, immigrants had significantly lower adjusted probability of any ACP engagement (immigrants: 74% vs. US-born: 83%, p < 0.001), EOL discussions (67% vs. 77%, p < 0.001), DPOA designation (50% vs. 59%, p = 0.001) and living will documentation (50% vs. 56%, p = 0.03). Among immigrants, each year in the United States was associated with a 4% increase in the odds of any ACP engagement (aOR 1.04, 95% CI 1.03-1.06), ranging from 36% engaged 10 years after immigration to 78% after 70 years. CONCLUSION: ACP engagement was lower for US immigrants compared to US-born older adults, particularly for those that recently immigrated. Future studies should explore strategies to reduce disparities in ACP and the unique ACP needs among different immigrant populations.

Effect of the COVID-19 pandemic on meaningful activity engagement in racially and ethnically diverse older adults.

BACKGROUND: Participation and active engagement in meaningful activities support the emotional and physical well-being of older adults. In 2020, the onset of the COVID-19 pandemic altered lives, including the ability to participate in meaningful activities. This study compared meaningful activity engagement before and at the beginning of the COVID-19 pandemic in a nationally representative, diverse sample >65 years between 2015 and 2020. METHODS: We described the proportions and characteristics of National Health and Aging Trends Study participants and their engagement in four activities: visiting friends or family, attending religious services, participating in clubs/classes/other organized activities, and going out for enjoyment. We used mixed effects logistic regressions to compare probabilities of activity engagement before 2020 and in 2020, adjusting for age, sex, functional status, income, geographic region, anxiety-depression, and transportation issues. RESULTS: Of 6815 participants in 2015, the mean age was 77.7 (7.6) years; 57% of participants were female; 22% were Black, 5% Hispanic, 2% were American Indian, and 1% were Asian; 20% had disability; and median income was $33,000. Participation in all four activities remained consistent between 2015 and 2019 and declined in 2020. Significant differences existed in attending religious services (p < 0.01) and going out for enjoyment (p < 0.001) by race and ethnicity, before and after the start of COVID-19. Black and Hispanic participants experienced the largest decline in attending religious services (-32%, -28%) while Asian and White participants experienced the largest decline in going out for enjoyment (-49%, -56%). CONCLUSIONS: Potential quality of life tradeoffs should be considered to a greater extent in future pandemic emergencies.

Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia.

Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012-December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated). Results: The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06-1.19]) and minoritized PWD (AOR range 1.2-1.3) and was substantially higher in unrated hospices (AOR range 1.8-2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18-1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.

'It was a great brain, and I miss it': lay perspectives on postoperative cognitive dysfunction.

BACKGROUND: Postoperative cognitive dysfunction (POCD) is a concern after anaesthesia and surgery, but preoperative discussion of neurocognitive risks with older patients rarely occurs. Anecdotal experiences of POCD are common in the popular media and may inform patient perspectives. However, the degree of alignment between lay and scientific perspectives on POCD is not known. METHODS: We performed inductive qualitative thematic analysis on website user comments publicly submitted under an article entitled, 'The hidden long-term risks of surgery: "It gives people's brains a hard time"', published by the UK-based news source The Guardian in April 2022. RESULTS: We analysed 84 comments from 67 unique users. Themes that emerged from user comments included the importance of functional impact ('Couldn't work … even reading was a struggle'), attribution to a range of causes but particularly the use of general, rather than consciousness-preserving, anaesthesia techniques ('side effects aren't fully understood'), and inadequate preparation and response by healthcare providers ('I would have benefited by being warned'). CONCLUSIONS: There is misalignment between professional and lay understandings of POCD. Lay people emphasise subjective and functional impact of symptoms, and express beliefs about the role of anaesthetics in causing POCD. Some patients and caregivers affected by POCD report feeling abandoned by medical providers. In 2018, new nomenclature for postoperative neurocognitive disorders was published, which better aligns with lay perspectives by including subjective complaints and functional decline. Further studies based on newer definitions and public messaging may improve concordance between different understandings of this postoperative syndrome.