Older adults with chronic pain from underserved communities need evidence-based pain management programs. To meet this need, we interviewed patients and staff from an underserved community clinic to identify their treatment preferences and barriers and facilitators to participating in a mind-body activity program. We conducted nine qualitative interviews (two staff; seven patients) and six focus groups (three staff groups; three patient groups), transcribed them verbatim and then used inductive-deductive thematic analysis guided by two pre-specified superordinate domains: (1) treatment preferences and (2) barriers and facilitators to participation. Participants recommended flexible, group participation options (in person, remote) with a credible leader and with multi-cultural considerations. They generally reacted positively to the proposed content. Barriers included logistical barriers (e.g. transportation, finances), weather, and skepticism about novel treatments; facilitators centered on expanding access and increasing sense of community. Our findings highlight important considerations to facilitate the uptake of mind-body activity programs for underserved older adults with chronic pain.

Background Despite the growing proportion of older adults with inflammatory bowel disease (IBD), their lived experience is not well understood. IBD literature is generally focused on younger adults, and few studies are qualitative. Older adults may report well-being differently than younger adults, so it is important that we learn about their goals and priorities with a chronic disease. Objective The study sought to understand the lived experience of older adults with IBD and explore their perceptions and priorities. Methods We conducted in-depth interviews with patients ≥60 years of age with IBD to evaluate the impact and perception of IBD in the context their overall health and life. We used a hybrid inductive-deductive thematic analysis of our transcripts to identify underlying patterns. Results We achieved thematic saturation after 22 interviews. We produced 4 major themes: (1) having IBD at an older age, (2) financial ramifications of IBD at an older age, (3) expectations for a meaningful life, and (4) unmet needs. Prominent subthemes included (1) ageism, loss of autonomy, and barriers to healthcare; (2) retirement and insurance issues; (3) redefining quality of life and gratitude; and (4) social isolation and navigating daily life with IBD. Conclusions Having IBD later in life presents unique challenges. Physicians treating older patients should consider age-sensitive communication, susceptibility to social isolation, and practices for healthy aging in the context of IBD. Patient priorities for further investigation include more representation in the media and educational material tailored for older adults with IBD.

BACKGROUND:Education and support for ostomy are instrumental in surgical recovery and adaptation. This study aimed to evaluate (i) the challenges faced by fecal ostomy patients with colorectal cancer and (ii) the resources necessary for recovery. METHODS:This study recruited patients 21 to 90 days after scheduled fecal ostomy surgery for locally advanced or metastatic colorectal cancer from a single tertiary academic center. This study conducted 1:1 semistructured interviews until thematic saturation using hybrid deductive-inductive coding. RESULTS:This study interviewed 20 patients (80% male; mean age of 59.7 years). Several major themes emerged, including challenges in (i) practical ostomy management, (ii) emotional distress, (iii) adaptation to daily life, and (iv) provider relationships. The participants faced ostomy care challenges owing to peristomal skin issues, leaks, and difficulty ordering supplies. Many participants noted significant distress or anxiety related to embarrassment caused by leaks, odors, or noise. This distress led participants to fear going out in public, embarrassment from the ostomy, and anxiety about their daily activities (eg, returning to work and relationships). When adapting to life with an ostomy, several participants noted that anxiety affected their ability to care for the ostomy and resume their daily activities, leading to social isolation. Patients reported challenges with provider relationships and a lack of anticipatory guidance from the surgical team preoperatively, including insufficient education on practical management, ordering of ostomy supplies, ensuring adequate hydration, and maintaining proper nutrition. CONCLUSION:Patients with colorectal cancer who require fecal ostomy face several challenges related to ostomy. Interventions that address practical management, navigating distress, adaptation, and provider education are needed to provide tailored education and support.

BACKGROUND:Seriously ill older surgical patients with preoperative palliative care needs, such as those with pain, depression, functional dependence, and care partner needs, may benefit from palliative care, but their prevalence, characteristics, and outcomes have not been described. STUDY DESIGN:We used data from the Health and Retirement Survey linked to Medicare claims and included older adults (age 66 years or older) with and without serious illness who underwent major elective surgery between 2007 and 2019. Exposures included serious illness and pain, depression, functional dependence, and care partner needs before operation. Outcomes were 1-year healthcare usage and cost (ie total hospital days, hospital readmission, emergency department visits, and Medicare cost). RESULTS:Among 2,499 older adults undergoing major elective surgery, 63% were seriously ill, and 79% reported pain, depression, functional dependence, or care partner needs. Seriously ill older adults with preoperative palliative care needs experienced a higher rate of total hospital days (incidence rate ratio [IRR] 2.0, 95% CI 1.5 to 2.6), hospital readmission (IRR 2.0, 95% CI 1.6 to 2.4) and emergency department visits (IRR 1.9, 95% CI 1.6 to 2.3). Adjusted 1-year healthcare cost was significantly higher among seriously ill older adults with these palliative care needs compared with those without serious illness (mean [SE] cost $38,187 [2,291] vs $20,129 [1,742]). CONCLUSIONS:Seriously ill older adults undergoing major elective surgery had a high prevalence of palliative care needs, which were associated with increased healthcare usage and cost. These findings highlight the imperative to identify and intervene in older surgical patients who may benefit from palliative care.

Background People with Alzheimer's disease (AD) now have access to disease-modifying treatment with anti-amyloid monoclonal antibodies (mAbs). Their perception of risks and benefits and approach to treatment decisions remain unknown. Objective We aimed to understand how people with AD weigh the benefits and costs of anti amyloid mAbs and incorporate these into decisions about treatment. Methods We conducted semi-structured interviews with people with biomarker- or imaging-confirmed AD and mild or moderate cognitive impairment who were seen at memory care clinics and discussed lecanemab with a clinician. Interviews were recorded, transcribed, and deidentified. Thematic analysis identified themes and subthemes. Results Among 22 participants (mean age 70, 8 [36%] women, 22 [100%] White), analysis revealed 3 major themes and associated subthemes: (1) People with AD sought and obtained information from different sources—advocacy organizations, the Internet, and clinicians; (2) Hopes, expected benefits, and the existential threat of dementia drove willingness and readiness to start lecanemab; (3) Individual traits, family factors, and degree of trust in expertise influenced how people balanced risks and benefits. Some would accept treatment at any cost; others carefully weighed risks and burdens, but were motivated by supportive families, insurance coverage, and trust in expertise; for a few, costs decidedly outweighed their personal benefits. People with AD desired more individualized information and to hear more from patients who took the medication. Conclusions Results from this first qualitative study of people with AD considering treatment with anti-amyloid mAbs can inform clinician, health system and policy efforts to individualize decisions.

The number of older adults (65+) in the United States grew by 34% between 2012 and 2022. By 2040, more than 78 million Americans will be 65 or older, which is more than double the number (35 million) of people in that age category in 2000. 1 Aging is associated with the development of chronic conditions and multimorbidity, 2 which led older adults to incur, on average, $5,277 in medical expenses in 2022 despite only having a median income of $29,740. Although the US general population spends approximately 8% of its total expenditures on health, older Americans spend approximately 13% of their total expenditures on health. 1 As the number of older adults is growing, the number of people living with multiple chronic conditions is also growing. 3 Those with more chronic conditions tend to have fewer financial resources and greater physical limitations, often making it difficult to get to medical appointments. 4,5 Telehealth is a particularly useful tool in helping manage many chronic conditions, particularly when it can be delivered at lower cost to patients and reduce the need for physical travel. 6 In the wake of the COVID-19 pandemic, telehealth technology grew tremendously, particularly in its usage to manage chronic conditions of older adults who were particularly susceptible to harmful effects of COVID-19 but who continued to need ongoing medical care. 7 Telehealth, the use of technology to facilitate encounters and/or the exchange of medical information between providers and patients at a distance, can enable remote consultations, diagnoses, and patient monitoring using video conferencing, mobile apps, and wearable devices, as examples. Telehealth, which is generally accepted as a broader term than the term telemedicine, can also include patient and provider education, patient self-management support, and health information services. 8 Telehealth offers benefits including increased access to timely care, reduced patient travel burdens, improved efficiency for physicians, and early intervention in critical situations. 9,10 Advancements in telehealth technology have paved the way for a future where healthcare services are readily available to everyone, irrespective of geographical barriers, age, and health status. In this paper, we delineate barriers and biases to the equitable use of telehealth to care for older adults and approaches to identify and ameliorate such barriers. 11 Although the benefits of telehealth are clear, certain people, including some older adults, may experience barriers to its utilization creating a potential for inequity in care delivery. Research shows that many older adults face unique challenges to the adoption of telehealth that include physical and cognitive challenges associated with aging, low health literacy, technology-related challenges associated with lack of access, low technology literacy, discomfort with new technologies, and implicit ageist biases, any of which may prevent health care providers from offering them telehealth services.Barriers associated with aging include cognitive and sensory impairments and reliance on caregivers or family members to assist with technology. 12,13 In one study, 82% of homebound patients (mean age 82.7; 46.6% with dementia) required assistance from a family member and/or paid caregiver to complete a telehealth visit. 14 Another study found that older adults with visual impairments were less likely to have or know how to use a cell phone, a tablet, or a computer. Lack of access to technology can also be a barrier for older adults. 15 Although access is increasing, only 61% of adults 65 years and older were using smartphones in 2021. 16 Additional barriers related to technology include device specific complaints such as difficulty learning to use devices, costs of devices, lack of instruction, and technical support, and technology anxiety and technophobia, among others. 17,18 An additional set of barriers comes in the form of biases that prevent telehealth use among older adults including ageism, ableism, and the infantilization of many older adults. 19 Implicit biases are associations made outside of conscious awareness leading to a negative evaluation of a person that are based upon irrelevant characteristics such as age or gender. 16,20 Research shows that physicians are not immune to implicit biases, and in fact hold the same level of implicit bias as the rest of the population. 20 Importantly, evidence suggests that these biases can negatively impact diagnoses and treatment decisions. 21 Although true intrinsic difficulties to technology use are present with increasing frequency in older adults, the bias that all older adults "can't use technology," "can't hear," or "can't see" has created a paternalistic attitude towards older adults' capabilities. 22 As with all healthcare, a clear look at identifying underlying biases, including cultural, socioeconomic, racial, and educational biases, will enable us to identify and tailor care directly to individual patients rather than generalizing across a population.A key step to address barriers to equitable use of telehealth for older adults is to first identify the specific barrier(s) a patient may be facing. Ideally, systematic screening at the level of the health system, and taking a multi-stakeholder approach to identifying barriers 23 can be implemented to identify barriers at the individual and population levels and so that those identified barriers can be matched with available interventions. At a minimum, initial assessments should include understanding what technologies patients have access to (smartphone, broadband, computer), digital literacy (skills needed to perform tasks online or on computers), and health literacy (skills to identify, understand, and use health-related information), which tend to be associated with one another. 24 The Telehealth Literacy Screening Tool is one example of such an assessment that can be used with older adults. 25 Additional relevant factors include implicit age-related biases in health care delivery. Validated instruments to assess one's own implicit biases such as the Implicit Association Test can be used to uncover and serve as an initial step to address age-related biases. 26 As telehealth is increasingly used with and by older adults, effort should be directed to assure that it is purposefully designed to address older adults' needs. Options should include accommodations for users with visual impairment, by offering digitally enlarged text, visual optimization of printed materials, and instructional guides available in audio and text versions. To address discomfort with new technologies, services should use platforms and interfaces that older adults already comfortable with using, to the extent that this can be generalized. 27 Telehealth should incorporate human-centered design strategies and be developed in collaboration with older adults. Systematic assessments of populations to understand the prevalence of digital health readiness barriers can inform prioritization of interventions at the system level, and deployment of the right interventions to the right individuals. We describe several existing exemplar programs that address a variety of barriers, along with suggestions for expansion where applicable.Technology and Broadband Access: Programs that provide discounted devices and broadband mostly with income caps, are available, including Comcast's Affordable Connectivity Program. Though these programs help some "at need" populations, more work is needed to ensure everyone who is eligible knows about and can access these services. Deployment of individuals such as community health workers into communities to provide active outreach both informing and enrolling people into these programs may improve access.Access Hubs: Hubs provide a centralized location for patients to come to use digital resources. These hubs can assist individuals who have unstable housing or unreliable broadband access to more reliably access devices and the internet. Hubs can also benefit older adults who need more technical support as staff can be stationed there to provide face-to-face, real-time support. A variety of community-based programs often function as an access hub including local libraries and community centers.Facilitated Technological Support: Some organizations have evaluated various facilitation including a change in service design to address intrinsic barriers to independent technology use, such as cognitive or functional limitations. Making models in which support individuals can facilitate telehealth visits for older adults available, including sending emergency medical technicians (EMTs) or community health workers to patients' homes or using staff facilitators in long-term care facilities, is vital. 28 Language and Culture Considerations: Cultural barriers to telehealth use for older adults must also be addressed. In a consensus conference focused on developing a patient-centered research agenda to reduce disparities in telehealth uptake 'addressing cultural facilitators and barriers to telehealth use' was identified as one of the top three priorities. 29 Studies support the need for increased focus on cultural competency, specifically for populations with limited English proficiency. 30 A study of medical students documented lower confidence in providing care to patients with limited English proficiency via telehealth as compared to in-person. 31 Moreover, work has documented challenges incorporating translator services into telehealth. 32 Training of Providers: Providers also require specific training focused on recognizing and overcoming their own biases about telehealth and who is "appropriate for" or able to engage in a telehealth visit, particularly with respect to older adult patients. Increasingly, health care organizations are investing in implicit bias trainings. 33 Instead of wondering "who," clinicians must be trained to think "how" to facilitate a telehealth visit for anyone, thus ensuring the same access to a valuable component of care.As telehealth becomes a ubiquitous part of healthcare, identification of barriers to older adults' usage of telehealth and systematic strategies to address them can reduce healthcare inequities and potentially improve access and quality of life for a growing number of older adults. While we focus on strategies for identifying and mitigating barriers to telehealth utilization, we must also ensure we consider implicit biases that may prevent providers from offering telehealth to older adults.No competing financial interests exist.

Millions of Americans have Alzheimer's Disease and Related Dementias (ADRD). While people with ADRD can live well, many become homebound and are not able to access office-based primary care. Existing dementia care interventions improve patient and caregiver outcomes but are not tailored to homebound people living with dementia, their caregivers, or home-based primary care (HBPC) practices and clinicians who care for them. This study aimed to adapt existing dementia care models to the HBPC setting through qualitative focus groups with caregivers of homebound people living with dementia (n = 24) and HBPC clinicians (n = 22). Using the FRAME framework for intervention adaptation, and the Framework qualitative analysis method, our findings include that caregivers identified behavior management, decision-making, and safety as key areas where they needed more help from their HBPC practice. We co-created the Dementia Care Quality at Home (DCQH) intervention with HBPC clinicians to address this gap by adapting an existing dementia care model to the home and HBPC. Evaluation will determine if intervention refinement based on this feedback enhances the feasibility and acceptability of the DCQH.

Underdiagnosis of Alzheimer’s disease and related dementias (ADRD) leads to lost opportunities for timely intervention, increased healthcare costs, and underestimation of the true burden of disease. To address this problem, we developed an AI algorithm, Decipher-AI ( DE tection of C ognitive I mpairment PH enotypes in EHR), to screen primary care patients for undiagnosed cognitive impairment (CI). We evaluated performance across sociodemographic groups using 3 years of EHR data before the first diagnosis or most recent visit. Decipher-AI employs a two-level hierarchical model, consisting of a large language model (LLM) to generate latent representations from unstructured clinical text and a patient-level model that combines these representations with structured EHR data to predict the probability of CI (AUC: 0.98, 95% CI: 0.94, 1.00). Decipher-AI was evaluated on a test set comprising 22,000 Mass General Brigham primary care patients aged 65 years or older. The selection process involved stratified random sampling across distinct racial/ethnic strata to ensure representation of diverse sociodemographic factors (Table 1). Cognitive status labels were determined based on the presence of dementia-related diagnosis codes, while sociodemographic status was measured using the Area Deprivation Index (ADI). The AUC on the validation dataset was 0.80 [95% CI: 0.79, 0.81]; sensitivity was 0.75 [0.74, 0.77] and specificity 0.68 [0.67, 0.69], at the threshold of maximum accuracy. There were no significant differences in AUCs across sex or race/ethnic subgroups, but AUC was lower for patients under 75 years. (Figure 1A). Notably, Decipher-AI exhibited diminished performance in patients from more disadvantaged neighborhoods (Figure 1B). Further analysis revealed that these disparities were associated with fewer encounters, outpatient visits, and notes containing cognition-related keywords in patients from disadvantaged neighborhoods (Table 2). Our study highlights the potential of Decipher-AI for screening undiagnosed cognitive impairment in primary care. Nevertheless, disparities in algorithm performance underscore the importance of addressing sociodemographic inequities in EHR data. In the future, systematic tailored screening in primary care via standardized questionnaires coupled with AI-assisted chart reviews, has the potential to address the underdiagnosis of ADRD in an equitable manner.

Introduction:Pain in sickle cell disease (SCD) causes profound emotional and psychological consequences. Poor communication between clinicians and people with SCD can worsen the acute pain experience, yet strategies to improve these interactions remain unclear. We aimed to understand how people with SCD communicate with clinicians about pain and how patient-clinician communication could be improved. Methods:We conducted semi-structured qualitative interviews with people with SCD aged 16 and older (n = 30). We used rapid qualitative analysis to provide early insights into intervention development. Results:Five themes emerged: 1) people with SCD want clinicians to believe their pain experiences, to show they care, and to demonstrate knowledge about SCD; 2) SCD-related pain directly impacts the ability to communicate; 3) communication about SCD pain should be tailored in content and pace based on the pain severity; 4) prior experiences influence how people with SCD communicate about pain; and 5) healthcare system and institutional factors can positively influence patient-clinician communication in SCD. Discussion:Empathic communication can have significant impact on the pain experience of people with SCD. Training clinicians in SCD-specific empathic communication skills may improve pain care for this population.

ABSTRACT Background One in three older adults in the United States dies with or from dementia. Little is known about whether end‐of‐life caregiving experiences differ by dementia diagnosis. Methods We conducted a secondary analysis of two qualitative studies. Participants included caregivers of decedents with “rapid‐type” sporadic Creutzfeldt–Jakob Disease (sCJD, survival prognosis of < 1 year) or “slow‐type” Alzheimer's disease and related dementias (survival prognosis of 5–20 years). We used reflexive thematic analysis and a novel method, poetic analysis, to compare end‐of‐life caregiving experiences. Results “Rapid‐type” caregivers ( n = 12) had a median age of 59 (range 45–73) years; 6 were female, and 9 were spouses. “Slow‐type” caregivers ( n = 15) had a median age of 69 (45–82) years; 9 were female, and 11 were spouses. We identified three main areas of differential experience that were influenced by syndrome rarity and participation in research yet hinged on time . Time enables preparation : Due to the rarity of sCJD, “rapid‐type” caregivers struggled to obtain accurate diagnoses, which prevented preparation for end‐of‐life care. Weeks or months before death, specialists simultaneously disclosed sCJD diagnoses and recommended hospice. In contrast, for “slow‐type” dementia, preparation began years before death. Time complicates conflict : Most “rapid‐type” caregivers described conflicts , rarely resolved before death, about code status, treatment, or care location decisions. Fewer “slow‐type” caregivers experienced such conflicts, and these were typically resolved before death; instead, they experienced conflict between needs and what the care system provides. Postmortem experience contrasts with perimortem : For “rapid‐type” dementia, short perimortem periods contrasted with elongated and often intense postmortem logistics and grief. For “slow‐type” caregivers, preparation and perimortem grieving typically led to shorter duration and minimally intrusive postmortem logistics and grief. Conclusions End‐of‐life care for dementia should attend to and support axes of differential experience based on diagnosis and rarity, time since symptom onset (affecting preparation and conflict resolution), and participation in research studies.

AimsLatino and Spanish-speaking older adults experience poorer pain outcomes and have limited access to chronic pain treatments compared to their non-Latino English-speaking counterparts. To help inform interventions for this population, we examined the chronic pain treatment experiences and preferences of Spanish-speaking Latino older adults.MethodsFocus groups and individual qualitative interviews were carried out in Spanish with older Latino patients who self-reported chronic musculoskeletal pain at a community health clinic. Data was analyzed utilizing a hybrid deductive-inductive thematic approach.ResultsParticipants reported mixed experiences with biomedical treatments (e.g., perceived ineffectiveness, harmful side effects, skepticism toward polypharmacy and surgery). Others pursued herbal and alternative remedies to manage their pain with limited results. Participants identified multiple barriers to accessing and adhering to non-pharmacological chronic pain treatments, including psychosocial factors (e.g., perceived laziness and forgetfulness), limited insurance coverage, and a lack of services offered in Spanish at their community health clinic. Participants preferred noninvasive, behavioral, and activity-based solutions over biomedical treatments.ConclusionFindings emphasize the current gaps in care for Latino older adults living with chronic pain and the need for noninvasive, accessible chronic pain behavioral treatments for the rapidly growing older Spanish-speaking adult population.

BACKGROUND AND OBJECTIVES:Caregivers of persons living with dementia experience high stress triggered by the behavioral symptoms of care-recipients. Current stress management interventions exist but are primarily focused on providing support or education targeting general caregiving stress. We need caregiver interventions that also address stress triggered by the behavioral symptoms of persons living with dementia. Here, we showcase the development of the Mindfulness and Self Compassionate Care program (MASC), a new program that integrates emotional regulation skills (mindfulness, compassion, and self-compassion), with practical strategies to manage behavioral symptoms in persons living with dementia. RESEARCH DESIGN AND METHODS:In this mixed-methods study, we conducted 5 focus groups (N = 28) with a racially and socioeconomically diverse sample of stressed caregivers of persons living with dementia who endorse behavioral symptoms. We aimed to understand their needs, preferences, and perceptions of the proposed MASC skills. Twenty-four of these caregivers completed an optional quantitative survey. We used a hybrid inductive-deductive approach for qualitative analyses and descriptive statistics to analyze quantitative data. RESULTS:Qualitative analyses showed high stress in caregivers stemming from their care-recipients behavioral symptoms. Caregivers reported interest in a program like MASC, liked the proposed skills, and provided recommendations to enhance the program's format and content. Quantitative analyses supported the need of the program and the interrelation between program mechanisms and outcomes. DISCUSSION AND IMPLICATIONS:Caregivers provided valuable information for adapting the program content and methodology. Current work includes an open pilot with exit interviews to refine the program with the goal of efficacy testing and implementation.

Importance Goal concordance underpins high-quality care for patients with serious illness and older adults with multimorbidity and geriatric syndromes; however, a criterion standard for measurement is lacking. Objective To identify and describe patient- and caregiver-reported measures of goal concordance for patients with serious illness, geriatric syndromes, and multimorbidity to create a conceptual model of goal-concordance measurement. Evidence Review This scoping review included an electronic search across MEDLINE, Embase, Web of Science Core Collection, the CINAHL, and PsycINFO through September 2024. Search terms included goals, priorities, preferences, value, expectations, concordance, discordance, match, attain, achieve, align, congruence, dissonance, respect, and terms related to multimorbidity, geriatric syndromes, and serious illness. The review included randomized clinical trials and quasiexperimental, observational, cohort, cross-sectional, mixed methods, quality-improvement, and qualitative studies, plus secondary analyses that either included a patient- and/or caregiver-reported measure of goal concordance as an outcome or as part of a measure development or validation study. Two reviewers extracted data and resolved disagreements via discussion. Study and measure characteristics were summarized and cross-tabulated to identify measurement framework patterns and to propose a conceptual model of measurement. Findings Of 4801 articles screened, 664 full-text articles were assessed for eligibility. A total of 63 studies met inclusion criteria, yielding 67 measures; 44 measures were unique. Most studies were secondary data analyses (17 studies [27.0%]) and included patients with serious illness (44 studies [69.8%]). Measures used 7 of 10 available goal concordance frameworks, with most adopting framework 7 (40 measures [59.7%]), which matched patient preference for an outcome with degree of desired outcome achievement. Four framework components were identified and used to create a conceptual model for goal-concordance measurement: (1) patient preference for an outcome or treatment, (2) treatment undergone or treatment intention, (3) degree of treatment alignment with preference, and (4) degree of desired outcome achievement. Conclusions and Relevance This scoping review of patient- and caregiver-reported measures of goal concordance for patients with serious illness, geriatric syndromes, and multimorbidity describes existing measurement frameworks and proposes a conceptual model of measurement that can be used to guide future goal-concordance measure development in geriatrics and palliative care.

Background Despite technological advances and earlier and more confident diagnoses, there is a lack of post-diagnosis support for couples navigating the challenges of early dementia. Clinically elevated emotional distress is common for both partners after diagnosis, and interferes with the health, relationships, and adjustment of both partners if not addressed. Objective Our objective was to gather in-depth information on couples’ preferences to inform the development of a proposed dyadic intervention addressing emotional distress early (within 6 months) after one partners’ receipt of a dementia diagnosis. Methods We recruited couples after a recent dementia diagnosis (N = 16 dyads; 32 participants) from a large academic medical center via direct provider referrals for 60-min virtual dyadic interviews. Data were analyzed using a hybrid inductive-deductive approach to thematic analysis. Results We identified themes within 3 a-priori determined domains. For dyadic intervention format (domain 1), couples preferred to participate in sessions together and to have flexible options for telehealth and in-person participation. Preferences for intervention content (domain 2) included information on dementia, skills to reduce distress and promote resiliency, and support to communicate about the diagnosis and related stress. Barriers and facilitators (domain 3) included denial or hesitation, resource constraints, and interests in learning skills and connecting to others. Conclusions We gathered comprehensive information that could be used to adapt existing dyadic interventions and to tailor support to match couples’ preferences early after dementia diagnoses. Early interventions should prioritize flexible delivery of information and skills to couples to support adaptive coping following dementia diagnoses.

Managing advanced cancer can be psychologically distressing and burdensome for family caregivers and their care recipients. Innovations in the collection and modelling of passive data from personally-owned smartphones (e.g., GPS), called digital phenotyping, may afford the possibility of remotely monitoring and detecting distress and burden. We explored the potential of using passively-collected GPS data from smartphones to assess and predict caregiver and patient distress and burden. This exploratory longitudinal cohort study enrolled smartphone-owning family caregiver and patient participants with advanced cancer (August 2021-July 2023) recruited via an oncology clinic or self-referral through Facebook. Participants downloaded a digital phenotyping research app, called Beiwe, that passively collected GPS data for 24 weeks. Participants completed self-report measures (PROs) of anxiety and depressive symptoms (Hospital Anxiety and Depression Scale [HADS]), mental health (PROMIS Mental Health), and caregiver burden (Montgomery-Borgatta Caregiver Burden scale) at baseline and every 6 weeks for 24 weeks. After pre-processing raw GPS data into daily GPS features (e.g., time spent at home, distance traveled/day), computing biweekly moving averages and standard deviations, and conducting a principal components analysis (PCA) of the resulting variables, within-person regression models were used to assess associations between changes in PRO measures and changes in PCA scores, with adjusted-R2 as the measure of effect size (small = 0.02, medium = 0.13, large = 0.26). Evaluable data were collected from 48 participants (family caregivers = 32; patients = 16). Caregiver smartphone data explained small-to-medium variance in caregiver anxiety (0.06), depression (0.15), and mental health (0.07). Patient smartphone data predicted small to medium variance in caregiver depressive symptoms (0.12) and burden (0.05). Combined caregiver and patient smartphone data explained small variance in caregiver depressive (0.02) and anxiety symptoms (0.10) and large variance for PROMIS-mental health (0.36) and burden (0.50). For patient outcomes, caregiver smartphone data accounted for small variance in anxiety symptoms (0.07); patient smartphone data predicted large variance in anxiety symptoms (0.24). Combined data explained medium variance in patient depressive symptoms (0.18). The exploratory study demonstrates the potential predictive utility of using passive smartphone data to detect changes in caregiver and patient psychological distress and burden. A larger study is needed to validate these findings and further explore the clinical application of digital phenotyping in cancer.

ABSTRACT Background Measurement of frailty is limited in clinical practice. Existing electronic frailty indices (eFIs) are derived from routine primary care encounters, with near‐complete health condition capture. We aimed to develop an eFI from routinely collected clinical data and evaluate its performance in older adults without complete health condition capture. Methods Using Electronic Health Record (EHR) data from an integrated regional health system, we created a cohort of patients who were ≥ 60 years on January 1, 2017 with two outpatient encounters in 3 years prior or one outpatient encounter in 2 years prior. We developed an eFI based on 31 age‐related deficits identified using diagnostic and procedure codes. Frailty status was categorized as robust (eFI < 0.1), prefrail (0.1–0.2), frail (0.2–0.3), and very frail (> 0.3). We estimated cumulative incidence of mortality, acute care visits and readmissions by frailty, and fit Cox proportional hazards models. We repeated analyses in a sub‐cohort of patients who receive primary care in the system. Results Among 518,449 patients, 43% were male with a mean age of 72 years; 73% were robust, 16% were pre‐frail, 7% were frail, and 4% were very frail. Very frail older adults had a significantly higher risk for mortality (HR: 4.1, 95% CI: 4.0–4.3), acute care visits (HR: 5.5, 95% CI: 5.4–5.6), and 90‐day readmissions (HR: 2.1, 95% CI: 2.1–2.2) than robust older adults. In a primary care sub‐cohort, while prevalence of deficits was higher, associations with outcomes were similar. Conclusions This eFI identified older adults at increased risk for adverse health outcomes even when data from routine primary care visits were not available. This tool can be integrated into EHRs for frailty assessment at scale.

Background: Dementia clinical trials often fail to include diverse and historically minoritized groups.Objective: We sought to adapt the Alzheimer's Disease and Related Dementias-Palliative Care (ADRD-PC) clinical trial to improve enrollment and address the cultural needs of people with late-stage ADRD who identify as Hispanic or Latino and their family caregivers.Design: Bilingual, bicultural research team members adapted study materials and processes using the Cultural Adaptation Process Model. Investigators and research staff held three meetings with eight Hispanic/Latino advisors-seven dementia caregivers and one health care professional. The first two meetings informed linguistic and cultural adaptation of study materials and processes. After piloting the adapted materials with Hispanic/Latino patient-caregiver dyads in the ADRD-PC study, the third meeting focused on refining protocols for recruitment.Results: Key reflections from advisor meetings guided cultural adaptation: lived experiences on dementia caregiving; patient, caregiver, and clinician interactions in the health care system; and limited knowledge and misconceptions of palliative care. Adaptations to the ADRD-PC study materials included specific consideration of preferred language, word choices (i.e., "palliative care" and "caregiver"), and recruitment considerations related to potential barriers to palliative care or research in general.Conclusions: Cultural adaptation of the ADRD-PC dementia palliative care clinical trial protocol depended on participatory methods and collaboration between Hispanic/Latino caregiver advisors and researchers, including bilingual, bicultural team members. Comparable methods may inform future culturally inclusive approaches to clinical research and thus improve representation of minoritized groups in dementia care research.

Alzheimer's Disease and Related Dementias (ADRD) pose a major public health challenge, with a critical need for accurate and scalable tools for detecting cognitive impairment (CI). Readily available electronic health records (EHRs) contain valuable cognitive health data, but much of it is embedded in unstructured clinical notes. To address this problem, we developed a GPT-4o-powered framework for CI stage classification, leveraging longitudinal patient history summarization, multi-step reasoning, and confidence-aware decision-making. Evaluated on 165,926 notes from 1002 Medicare patients from Mass General Brigham (MGB), our GPT-4o framework achieved high accuracy in CI stage classification (weighted Cohen's kappa = 0.95, Spearman correlation = 0.93), and outperformed two other language models (weighted Cohen's kappa 0.82-0.85). Our framework also achieved high performance on Clinical Dementia Rating (CDR) scoring on an independent dataset of 769 memory clinic patients (weighted Cohen's kappa = 0.83). Finally, to ensure reliability and safety, we designed an interactive AI agent integrating our GPT-4o-powered framework and clinician oversight. This collaborative approach has the potential to facilitate CI diagnoses in real-world clinical settings.

Older adults from underserved backgrounds experience chronic pain at a rate of 60% to 75%. Pharmacological treatments have limited efficacy and involve considerable risks. Mind-body interventions hold promise to improve pain outcomes but are typically not implemented in community clinics in which they are needed most, thus contributing to health disparities in chronic pain treatment. We conducted qualitative focus groups and interviews with 20 providers (eg, primary care doctors, nurses, administrators). We sought their perspectives on barriers and facilitators to implementing an evidence based mind-body activity program for older adults with chronic pain at an underserved community health clinic in Massachusetts. Subthemes were identified within 2 superordinate domains (barriers and facilitators) using a hybrid inductive-deductive thematic analysis approach following the Framework Method. Providers discussed facilitators (partner with clinic staff to facilitate referrals and buy-in, integrate referrals through the electronic medical record, offer groups in different languages, post and tailor advertisements) and barriers (limited staff bandwidth, scheduling challenges, inconsistent patient participation). These results will directly inform tailoring and subsequent effectiveness testing and implementation of the pain management program for older underserved adults with chronic pain in this community health care setting.