Community Participation Transition After Stroke (COMPASS) Randomized Controlled Trial: Effect on Adverse Health Events.

OBJECTIVE: To compare adverse health events in intervention versus control group participants in the Community Participation Transition After Stroke trial to reduce barriers to independent living for community-dwelling stroke survivors. DESIGN: Randomized controlled trial. SETTING: Inpatient rehabilitation (IR) to home and community transition. PARTICIPANTS: Stroke survivors aged ≥50 years being discharged from IR who had been independent in activities of daily living prestroke (N=183). INTERVENTIONS: Participants randomized to intervention group (n=85) received home modifications and self-management training from an occupational therapist over 4 visits in the home. Participants randomized to control group (n=98) received the same number of visits consisting of stroke education. MAIN OUTCOME MEASURES: Death, skilled nursing facility (SNF) admission, 30-day rehospitalization, and fall rates after discharge from IR. RESULTS: Time-to-event analysis revealed that the intervention reduced SNF admission (cumulative survival, 87.8%; 95% confidence interval [CI], 78.6%-96.6%) and death (cumulative survival, 100%) compared with the control group (SNF cumulative survival, 78.9%; 95% CI, 70.4%-87.4%; P=.039; death cumulative survival, 87.3%; 95% CI, 79.9%-94.7%; P=.001). Thirty-day rehospitalization also appeared to be lower among intervention participants (cumulative survival, 95.1%; 95% CI, 90.5%-99.8%) than among control participants (cumulative survival, 86.3%; 95% CI, 79.4%-93.2%; P=.050) but was not statistically significant. Fall rates did not significantly differ between the intervention group (5.6 falls per 1000 participant-days; 95% CI, 4.7-6.5) and the control group (7.2 falls per 1000 participant-days; 95% CI, 6.2-8.3; incidence rate ratio, 0.78; 95% CI, 0.46-1.33; P=.361). CONCLUSIONS: A home-based occupational therapist-led intervention that helps stroke survivors transition to home by reducing barriers in the home and improving self-management could decrease the risk of mortality and SNF admission after discharge from rehabilitation.

Examining the impact of a health report card on follow through with fall risk recommendations: an observational study.

BACKGROUND: Increasing older adults' awareness of their personal fall risk factors may increase their engagement in fall prevention. The purpose of this study was to explore the impact of and participant satisfaction with a comprehensive occupational therapy fall risk screening and recommendations for evidence-based fall prevention strategies based on personalized fall risk results for community-dwelling older adults. METHODS: Cognitively normal participants (Clinical Dementia Rating = 0) were recruited from an ongoing longitudinal study of memory and aging. Participants completed 2 annual in-home visits, fall risk questionnaires, and 12 months of fall monitoring between visits. Participants received a health report card with their fall risks and tailored recommendations in 6 domains. Participants completed follow-up questions at their next annual in-home visit about the fall risk recommendations and their satisfaction with receiving their fall risk results. RESULTS: Two hundred five participants completed 2 annual visits and 12 months of fall monitoring. Of the 6 domains of recommendations provided, participants were most likely to follow through with getting an annual eye exam and reviewing their medications with their doctor or pharmacist. Older adults who fell were significantly more likely to receive recommendations for finding fall prevention classes (p = 0.01) and having a doctor or pharmacist review their medications (p = 0.004). The majority of participants were satisfied receiving their fall risk results (92%) and believed it to be beneficial (90%), though few participants shared their results with their doctor (20%). CONCLUSIONS: An occupational therapy fall risk screening and tailored recommendations were not sufficient to encourage follow through with fall risk recommendations. Older adults may benefit from additional support and encouragement to reduce their fall risk. Additional research is needed to examine awareness of fall risks and follow through with fall risk recommendations among community-dwelling older adults.

Psychometric Evaluation of the Perceived Research Burden Assessment (PeRBA) in Longitudinal Studies of Alzheimer Disease Using Rasch Analysis.

INTRODUCTION: The Perceived Research Burden Assessment (PeRBA) was developed to measure participant perceptions of burden in research studies. This study aimed to examine the psychometric properties of this assessment using Rasch analysis in participants in the longitudinal studies of the Alzheimer disease (AD) and their family members. METHODS: PeRBA was administered to 443 participants in studies of AD and 212 family members across 4 Alzheimer Disease Research Centers. We used Rasch analysis to examine PeRBA's psychometric properties, and data-model fit both at item and scale levels. RESULTS: PeRBA demonstrated good reliability and item and person fit for participants and family members. A few items did not fit the model for participants or family members. Areas of content redundancy were found in items assessing similar amounts of perceived research burden. Areas of content gaps were also found, with no items assessing certain levels of perceived research burden. CONCLUSION: Analysis results support the good overall psychometric properties of PeRBA among research participants in studies of AD and their family members. Recommendations have been provided to improve the assessment, including rewording items and adding items that could account for a broader range of perceived research burden.

Perceptions of Research Burden and Retention Among Participants in ADRC Cohorts.

OBJECTIVES: Alzheimer disease (AD) and related dementias clinical research is associated with significant participant burden. The Perceived Research Burden Assessment (PeRBA) measures participants' perceptions of logistical, psychological, and physical burdens. The purpose of this study was to assess PeRBA's psychometric properties, perceptual sources, and behavioral consequences with participants in a multisite study of participant retention in longitudinal cohort studies of Alzheimer disease and related dementias. DESIGN: Multicenter mixed methods. SETTING: In-person or phone. PARTICIPANTS: A total of 443 participants at 4 NIA-funded Alzheimer Disease Research Centers (ADRCs) were randomly selected and invited to participate if they were 45 years of age or more, enrolled in longitudinal studies, and had a Clinical Dementia Rating Scale global score ≤1. MEASUREMENTS: Participants completed a 20-minute survey including the 21-item PeRBA about their research participation. RESULTS: PeRBA demonstrated high-internal consistency and convergent validity. PeRBA scores correlated with expected perceptual factors. Higher PeRBA scores were associated with lower attendance and higher dropout rates. CONCLUSIONS: PeRBA can be used by researchers to identify participants who may feel overburdened and tailor approaches and strategies to support participants in longitudinal AD studies, maximizing participation, and reducing dropout. Making efforts to increase participants' understanding of study procedures, and building and maintaining trust throughout the study, can contribute to reducing perceived burden and potentially increasing retention in longitudinal AD studies.

Feasibility of an Automated Bidet Intervention to Decrease Caregiver Burden.

IMPORTANCE: Informal caregivers often receive limited training and support, especially in providing assistance with toileting, a physically and emotionally demanding activity of daily living. This increases caregivers' risk for physical injury and burnout and jeopardizes older adults' ability to age in place. OBJECTIVE: To assess the feasibility, acceptability, and preliminary efficacy of a toileting intervention using an automated bidet to reduce the amount of physical assistance required from caregivers. DESIGN: Randomized wait-list control feasibility study. SETTING: Caregiver's home. PARTICIPANTS: Ten informal caregivers. INTERVENTION: An occupational therapy intervention to educate and train caregiving dyads to use an automated bidet system. Outcomes and Measures: Feasibility was measured in terms of recruitment and retention, bidet installation, ability to operate the bidet, acceptability (a process evaluation), preliminary efficacy (physical barriers and impact on caregiver outcomes of performance, satisfaction, and self-efficacy), and adverse events. RESULTS: All bidets were installed successfully. All caregivers reported that the intervention made toileting easier and increased their confidence. Physical barriers decreased for the treatment group. The bidet had a large effect on self-efficacy for the treatment group. CONCLUSIONS AND RELEVANCE: The results suggest that the automated bidet intervention is feasible and acceptable and can have a positive impact on caregiver outcomes when assisting with toileting. What This Article Adds: A toileting intervention using an automated bidet is feasible and acceptable for caregivers of older adults and can reduce the amount of physical assistance required from caregivers.

Gene expression profiling of proximal and distal renal tubules in Atlantic salmon (Salmo salar) acclimated to fresh water and seawater.

Euryhaline teleost kidneys undergo a major functional switch from being filtratory in freshwater (FW) to being predominantly secretory in seawater (SW) conditions. The transition involves both vascular and tubular effects. There is consensus that the glomerular filtration rate is greatly reduced upon exposure to hyperosmotic conditions. Yet, regulation at the tubular level has only been examined sporadically in a few different species. This study aimed to obtain a broader understanding of transcriptional regulation in proximal versus distal tubular segments during osmotic transitions. Proximal and distal tubule cells were dissected separately by laser capture microdissection, RNA was extracted, and relative mRNA expression levels of >30 targets involved in solute and water transport were quantified by quantitative PCR in relation to segment type in fish acclimated to FW or SW. The gene categories were aquaporins, solute transporters, fxyd proteins, and tight junction proteins. aqp8bb1, aqp10b1, nhe3, sglt1, slc41a1, cnnm3, fxyd12a, cldn3b, cldn10b, cldn15a, and cldn12 were expressed at a higher level in proximal compared with distal tubules. aqp1aa, aqp1ab, nka-a1a, nka-a1b, nkcc1a, nkcc2, ncc, clc-k, slc26a6C, sglt2, fxyd2, cldn3a, and occln were expressed at a higher level in distal compared with proximal tubules. Expression of aqp1aa, aqp3a1, aqp10b1, ncc, nhe3, cftr, sglt1, slc41a1, fxyd12a, cldn3a, cldn3b, cldn3c, cldn10b, cldn10e, cldn28a, and cldn30c was higher in SW- than in FW-acclimated salmon, whereas the opposite was the case for aqp1ab, slc26a6C, and fxyd2. The data show distinct segmental distribution of transport genes and a significant regulation of tubular transcripts when kidney function is modulated during salinity transitions.

Prolactin and cortisol regulate branchial claudin expression in Japanese medaka.

Several gill claudin (Cldn) tight junction proteins in Japanese medaka are regulated by salinity (cldn10 paralogs and cldn28b), while others are constitutively expressed (cldn27a, cldn28a and cldn30c). The role of the endocrine system in this regulation has yet to be understood. The in vitro effects of cortisol and prolactin on cldn expression in gill explant cultures were investigated in medaka. ncc2b and cftr were used as markers of specific ionocytes associated with freshwater- and seawater-acclimation, respectively. Concentration-response experiments were performed by overnight incubation with 0, 0.1, 1 and 10µgmL-1 cortisol or 0, 0.01, 0.1 and 1µgmL-1 ovine prolactin. Cortisol significantly up-regulated cftr, ncc2b, cldn10 paralogs, cldn27a and cldn30c from 1.2- to 5-fold control levels at 10µgmL-1. Cortisol had no effect on cldn28a and cldn28b. Prolactin had a concentration-dependent effect, decreasing expression of cftr (1µgmL-1, 2.2-fold) while increasing ncc2b (from 0.1µgmL-1, 6-7-fold). Prolactin up-regulated expression of 3 cldns: cldn28b (0.1 and 1µgmL-1), cldn10c and cldn10f (1µgmL-1), with up to 2-, 2.5- and 2-fold of control level, respectively. A combination experiment with both hormones showed that they act in synergy on cldn28b and have an additive effect on cftr, ncc2b, cldn10c and cldn10f. Our results showed that cortisol and prolactin are essential to maintain the expression of specific branchial claudins. This work also provides evidence that both hormones act directly on gill of medaka to modulate determinants of paracellular ion movement.

Falls and Alzheimer Disease.

Falls are the leading cause of injury, disability, and injury-related mortality in the older adult population. Older adults with Alzheimer disease (AD) are over twice as likely to experience a fall compared to cognitively normal older adults. Intrinsic and extrinsic fall risk factors may influence falls during symptomatic AD; intrinsic factors include changes in cognition and impaired functional mobility, and extrinsic factors include polypharmacy and environmental fall hazards. Despite many known fall risk factors, the high prevalence of falls, and the presence of effective fall prevention interventions for older adults without cognitive impairment, effective fall prevention interventions for older adults with AD to date are limited and inconclusive. Falls may precede AD-related cognitive impairment during the preclinical phase of AD, though a narrow understanding of fall risk factors and fall prevention interventions for older adults with preclinical AD limits clinical treatment of falls among cognitively normal older adults with preclinical AD. This mini review explores fall risk factors in symptomatic AD, evidence for effective fall prevention interventions in symptomatic AD, and preclinical AD as an avenue for future falls research, including recommendations for future research directions to improve our understanding of falls and fall risk during preclinical AD. Early detection and tailored interventions to address these functional changes are needed to reduce the risk of falls for those at risk for developing AD. Concerted efforts should be dedicated to understanding falls to inform precision fall prevention strategies for this population.

Differences in Daily Activity Performance Between Inpatient Rehabilitation Facility and Home Among Stroke Survivors.

BACKGROUND: Stroke survivors are one of the largest consumer groups of rehabilitation services. Despite improvement in daily activities while in inpatient rehabilitation, many have difficulty performing daily activities at home after discharge. The difference in performance between a standard clinical context and at home is poorly understood. OBJECTIVE: To better understand differences in activity performance during transition from inpatient rehabilitation facility (IRF) to home, we examined daily activity performance scores from 2 different environments (IRF and home) at the same time point (discharge). METHODS: This was a cross-sectional analysis using baseline data from a randomized controlled trial. Participants were stroke survivors aged ≥50 who planned to discharge home from the IRF. The Functional Independence Measure and Section GG codes (both converted to International Classification of Functioning, Disability, and Health scores) were conducted per protocol first at home and then in the IRF at discharge (≤3 days apart, order not randomized). RESULTS: Among 57 participants, activity scores at home were significantly worse than scores at IRF discharge. Over 40% of participants had discharge scores indicating no-to-mild impairment for shower/tub transfer, walking, and going up/down stairs, while home visit scores indicated moderate-to-complete impairment for those activities. The greatest differences in scores were for shower/tub transfer (median difference 1.5, 95% CI 1.00-2.00) and going up/down stairs (median difference 1.50, 95% CI 1.00-2.00). CONCLUSION: The environment plays an important role in stroke survivors' functioning at home. Future studies should further examine how the environment impacts activity performance upon returning home following stroke.

Removing home hazards for older adults living in affordable housing: A stepped-wedge cluster-randomized trial.

BACKGROUND: Falls are the leading cause of injury, disability, premature institutionalization, and injury-related mortality among older adults. Home hazard removal can effectively reduce falls in this population but is not implemented as standard practice. This study translated an evidence-based home hazard removal program (HARP) for delivery in low-income senior apartments to test whether the intervention would work in the "real world." METHODS: From May 1, 2019 to December 31, 2020, a stepped-wedge cluster-randomized trial was used to implement the evidence-based HARP among residents with high fall risk in 11 low-income senior apartment buildings. Five clusters of buildings were randomly assigned an intervention allocation sequence. Three-level negative-binomial models (repeated measures nested within individuals, individuals nested within buildings) were used to compare fall rates between treatment and control conditions (excluding a crossover period), controlling for demographic characteristics, fall risk, and time period. RESULTS: Among 656 residents, 548 agreed to screening, 435 were eligible (high fall risk), and 291 agreed to participate and received HARP. Participants were, on average, 72 years, 67% female, and 76% Black. Approximately 95.4% of fall prevention strategies and modifications implemented were still used 3 months later. The fall rate (per 1000 participant-days) was 4.87 during the control period and 4.31 during the posttreatment period. After adjusting for covariates and secular trend, there was no significant difference in fall rate (incidence rate ratio [IRR] 0.97, 95% CI 0.66-1.42). After excluding data collected during a hiatus in the intervention due to COVID-19, the reduction in fall rate was not significant (IRR 0.93, 95% CI 0.62-1.40). CONCLUSIONS: Although HARP did not significantly reduce the rate of falls, this pragmatic study showed that the program was feasible to deliver in low-income senior housing and was acceptable among residents. There was effective collaboration between researchers and community agency staff.

The Association Between Postural Sway and Preclinical Alzheimer Disease Among Community-Dwelling Older Adults.

BACKGROUND: It is unknown whether older adults with preclinical Alzheimer disease (AD) experience changes in postural sway compared with those without preclinical AD. The purpose of this study was to understand the effect of dual tasking on standing balance, or postural sway, for people with and without preclinical AD. METHODS: A cross-sectional analysis of baseline data from a longitudinal cohort study. Participants were cognitively normal older adults with and without preclinical AD. Postural sway (path length) was tested using a force plate under standard and dual task balance conditions. Dual task cost (DTC) was calculated to examine performance change in balance conditions. Logistic regression models were used to predict preclinical AD status as a function of DTC. RESULTS: 203 participants (65 preclinical AD+) were included. DTC for path length was significantly greater for participants with preclinical AD (DTC path length mean difference 19.8, 95% CI 2.6-37.0, t(201) = 2.29, p = .024). Greater DTC was significantly associated with increased odds of having preclinical AD (adjusted odds ratio for a 20-unit increase in DTC 1.16, 95% CI 1.02-1.32). CONCLUSIONS: Older adults with preclinical AD are more likely to demonstrate significantly greater DTC in postural sway than those without preclinical AD. Dual tasking should be integrated into balance and fall risk assessments and may inform early detection of preclinical AD.

Telehealth Delivery of Evidence-Based Intervention Within Older Adult Populations: A Scoping Review.

Telehealth services enable individuals to participate in meaningful occupations; however, the evidence on this topic has not been synthesized in older adult populations. This scoping review synthesized the evidence on interventions delivered through telehealth (and the mode of delivery) in occupational therapy for older adult populations. A search for studies on occupational therapy, older adults, and telehealth was performed in six research databases, and identified 536 articles. Four reviewers independently screened the titles and abstracts; and reviewed eligible full text. Ten articles were extracted into a table and summarized through narrative format. The studies focused on performance-based intervention (60%), cognition (10%), health (10%), occupation (10%), and the environment (10%) in older adult populations (N = 1 - 208); including those with Alzheimer's disease, chronic pain, cancer, and stroke. The interventions were delivered through electronic audio-visual platforms (e.g., zoom) (80%) and teleconference platforms (e.g., phone calls) (20%).

Influence of falls, fall-related injuries, and fear of falling on social participation in people aging with long-term physical disability: a cross-sectional study.

PURPOSE: This study examined prevalence and relationships among falls, injuries, fear of falling, and social participation in people aging with long-term physical disability (PAwLTPD). MATERIALS AND METHODS: A convenience sample of 474 PAwLTPD recruited from community agencies and social media as baseline of a longitudinal cohort study. Inclusion criteria: 45-65 years, self-reported physical disability for ≥5 years, and English-speaking. Self-report surveys of physical/mental health, falls in the past year, fear of falling, and Patient-Reported Outcomes Measurement Information System (PROMIS) ability and satisfaction with participation in social roles and activities measures were collected. RESULTS: Mean age 56.8 years; participants were mostly female (66.7%) and White (61.4%). Nearly 65% reported a fall; 56.6% of falls resulted in injury. Falls and fall-related injuries were associated with worse physical/mental health and presence of >5 health conditions. Seventy-five percent of participants reported fear of falling. Lower ability and satisfaction with participation were found in participants who fell and worried about falls. CONCLUSIONS: PAwLTPD are at increased risk of falls, fall-related injuries, and fear of falling, which affects their ability to engage in social activities. Future research is needed to understand circumstances associated with falls and to develop effective interventions to address falls in PAwLTPD.

Community-dwelling individuals aged 45­65 years who are aging with long-term physical disabilities report increased rates of falls, fall-related injuries, and fear of falling.People aging with long-term physical disabilities who experience falls report decreases in their social participation.Additional work within the rehabilitation field is needed to develop effective, evidence-based interventions to reduce the occurrence of falls among individuals aging with long-term physical disability.

Precipitating Mechanisms of Falls in Preclinical Alzheimer's Disease.

Background: Individuals with Alzheimer's disease (AD) are more than twice as likely to incur a serious fall as the general population of older adults. Although AD is commonly associated with cognitive changes, impairments in other clinical measures such as strength or functional mobility (i.e., gait and balance) may precede symptomatic cognitive impairment in preclinical AD and lead to increased fall risk. Objective: To examine mechanisms (i.e., functional mobility, cognition, AD biomarkers) associated with increased falls in cognitively normal older adults. Methods: This 1-year study was part of an ongoing longitudinal cohort study. We examined the relationships among falls, clinical measures of functional mobility and cognition, and neuroimaging AD biomarkers in cognitively normal older adults. We also investigated which domain(s) best predicted fall propensity and severity through multiple regression models. Results: A total of 182 older adults were included (mean age 75 years, 53% female). A total of 227 falls were reported over the year; falls per person ranged from 0-16 with a median of 1. Measures of functional mobility were the best predictors of fall propensity and severity. Cognition and AD biomarkers were associated with each other but not with the fall outcome measures. Conclusion: These results suggest that, although subtle changes in cognition may be more closely associated with AD neuropathology, functional mobility indicators better predict falls in cognitively normal older adults. This study adds to our understanding of the mechanisms underlying falls in older adults and could lead to the development of targeted fall prevention strategies.

Retention of Study Partners in Longitudinal Studies of Alzheimer Disease.

BACKGROUND: Study partners are required for all participants at Alzheimer's Disease Research Centers (ADRCs). Study partners' attitudes and beliefs may contribute to missed visits and negatively impact retention of participants in longitudinal AD studies. OBJECTIVE: Study partners (N = 212) of participants (Clinical Dementia Rating® [CDR]≤2) at four ADRCs were randomly surveyed to examine their facilitators and barriers to continued participation in AD studies. METHODS: Reasons for participation were analyzed with factor analysis and regression analysis. Effects of complaints and goal fulfillment on attendance were estimated with fractional logistic models. Open-ended responses were characterized with a Latent Dirichlet Allocation topic model. RESULTS: Study partners participated for personal benefit and altruism. They emphasized personal benefits more when their participants had a CDR > 0 than when they had a CDR = 0. This difference declined with participant age. The majority of study partners rated their ADRC participation as positive and meeting their goals. Although half reported at least one complaint, very few regretted participating. Those who reported that ADRC participation fulfilled their goals or had fewer complaints were more likely to have perfect attendance. Study partners requested more feedback about test results and better management of study visits. CONCLUSION: Study partners are motivated by both personal and altruistic goals. The salience of each goal depends on their trust in researchers and the participant's cognitive status and age. Retention may improve with perceived goal fulfillment and fewer complaints. Potential areas for improving retention are providing more information about the participant's test results and better management of study visits.

Gut microbiome composition may be an indicator of preclinical Alzheimer's disease.

Alzheimer's disease (AD) pathology is thought to progress from normal cognition through preclinical disease and ultimately to symptomatic AD with cognitive impairment. Recent work suggests that the gut microbiome of symptomatic patients with AD has an altered taxonomic composition compared with that of healthy, cognitively normal control individuals. However, knowledge about changes in the gut microbiome before the onset of symptomatic AD is limited. In this cross-sectional study that accounted for clinical covariates and dietary intake, we compared the taxonomic composition and gut microbial function in a cohort of 164 cognitively normal individuals, 49 of whom showed biomarker evidence of early preclinical AD. Gut microbial taxonomic profiles of individuals with preclinical AD were distinct from those of individuals without evidence of preclinical AD. The change in gut microbiome composition correlated with ß-amyloid (Aß) and tau pathological biomarkers but not with biomarkers of neurodegeneration, suggesting that the gut microbiome may change early in the disease process. We identified specific gut bacterial taxa associated with preclinical AD. Inclusion of these microbiome features improved the accuracy, sensitivity, and specificity of machine learning classifiers for predicting preclinical AD status when tested on a subset of the cohort (65 of the 164 participants). Gut microbiome correlates of preclinical AD neuropathology may improve our understanding of AD etiology and may help to identify gut-derived markers of AD risk.

Assessment of Instrumental Activities of Daily Living in Preclinical Alzheimer Disease.

Questionnaires are used to assess instrumental activities of daily living (IADL) among individuals with preclinical Alzheimer disease (AD). They have indicated no functional impairment among this population. We aim to determine among cognitively normal (CN) older adults with and without preclinical AD whether: (a) performance-based IADL assessment measures a wider range of function than an IADL questionnaire and (b) biomarkers of AD are associated with IADL performance. In this cross-sectional analysis of 161 older adults, participants in studies of AD completed an IADL questionnaire, performance-based IADL assessment, cognitive assessments, and had biomarkers of AD (amyloid, hippocampal volume, brain network strength) assessed within 2 to 3 years. Performance-based IADL scores were more widely distributed compared with the IADL questionnaire. Smaller hippocampal volumes and reduced brain network connections were associated with worse IADL performance. A performance-based IADL assessment demonstrates functional impairment associated with neurodegeneration among CN older adults.

Retaining Participants in Longitudinal Studies of Alzheimer's Disease.

BACKGROUND: Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants. OBJECTIVE: We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research. METHODS: Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model. RESULTS: Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research. CONCLUSION: The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.

Falls: a marker of preclinical Alzheimer disease: a cohort study protocol.

INTRODUCTION: Progression to symptomatic Alzheimer disease (AD) occurs slowly over a series of preclinical stages. Declining functional mobility may be an early indicator of loss of brain network integration and may lead to an increased risk of experiencing falls. It is unknown whether measures of functional mobility and falls are preclinical markers of AD. The purpose of this study is to examine (1) the relationship between falls and functional mobility with AD biomarkers to determine when falls occur within the temporal progression to symptomatic Alzheimer disease, and (2) the attentional compared with perceptual/motor systems that underlie falls and functional mobility changes seen with AD. METHODS AND ANALYSIS: This longitudinal cohort study will be conducted at the Knight Alzheimer Disease Research Center. Approximately 350 cognitively normal participants (with and without preclinical AD) will complete an in-home visit every year for 4 years. During each yearly assessment, functional mobility will be assessed using the Performance Oriented Mobility Assessment, Timed Up and Go, and Timed Up and Go dual task. Data regarding falls (including number and severity) will be collected monthly by self-report and confirmed through interviews. This study will leverage ongoing neuropsychological assessments and neuroimaging (including molecular imaging using positron emission tomography and MRI) performed by the Knight Alzheimer Disease Research Center. Relationships between falls and biomarkers of amyloid, tau and neurodegeneration will be evaluated. ETHICS AND DISSEMINATION: This study was approved by the Washington University in St. Louis Institutional Review Board (reference number 201807135). Written informed consent will be obtained in the home prior to the collection of any study data. Results will be published in peer-reviewed publications and presented at national and international conferences. TRIAL REGISTRATION NUMBER: NCT04949529; Pre-results.

Development and implementation of a community-based research network.

INTRODUCTION: People aging with long-term physical disabilities (PAwLTPD), meaning individuals with onset of disability from birth through midlife, often require long-term support services (LTSS) to remain independence. The LTSS system is fragmented into aging and disability organizations with little communication between them. In addition, there are currently no evidence-based LTSS-type programs listed on the Administration for Community Living website that have been demonstrated to be effective for PAwLTPD. Because of these gaps, we have developed a community-based research network (CBRN), drawing on the practice-based research network model (PBRN), to bring together aging and disability organizations to address the lack of evidence-based programs for PAwLTPD. MATERIALS AND METHODS: Community-based organizations serving PAwLTPD across the state of Missouri were recruited to join the CBRN. A formative process evaluation of the network was conducted after a year to evaluate the effectiveness of the network. RESULTS: Nine community-based organizations across the state of Missouri joined the CBRN. CBRN members include three centers for independent living (CILs), three area agencies on aging (AAAs), one CIL/AAA hybrid, one non-CIL disability organization, and one non-AAA aging organization. To date, we have held seven meetings, provided educational opportunities for CBRN members, and launched an inaugural research study within the CBRN. Formative evaluation data indicate that CBRN members feel that participation in the CBRN is beneficial. CONCLUSION: The PBRN model appears to be a feasible framework for use with community-based organizations to facilitate communication between agencies and to support research aimed at addressing the needs of PAwLTPD.