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BackgroundStudy 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.ObjectiveStudy 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.MethodsReasons 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.ResultsStudy 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.ConclusionStudy 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.

ObjectivesAlzheimer 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.DesignMulticenter mixed methods.SettingIn-person or phone.ParticipantsA 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.MeasurementsParticipants completed a 20-minute survey including the 21-item PeRBA about their research participation.ResultsPeRBA 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.ConclusionsPeRBA 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.

BackgroundRetention 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.ObjectiveWe 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.MethodsReasons 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.ResultsFactor 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.ConclusionThe 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.

Background: Home visits prior to inpatient rehabilitation facility (IRF) discharge allow occupational therapists to observe functional abilities among patients with stroke and address barriers that impact daily activities at home. However, home visits prior to IRF discharge are not standard practice due to barriers of time and cost constraints. We explored whether an access visit (visiting the home without the patient) could serve as an alternative to a home visit (with the patient) to anticipate functional abilities at home. Methods: We used baseline data from a randomized controlled trial that occurred before and during the COVID-19 pandemic, which caused predischarge home visits to be modified to access visits without the participant. Participants had suffered a stroke and were treated in an IRF, aged ≥ 50, with plans to discharge home. International Classification of Functioning, Disability, and Health (ICF) qualifier scores were compared between participants' home/access visits and IRF discharge. ICF scores were compared between predischarge home visits and IRF discharge and between access visits and IRF discharge using Wilcoxon signed-rank tests. Differences in ICF scores between home/access and IRF discharge were compared between home and access visits using linear regression models. Results: Among 99 participants (58% men, average 67 years old, 60% Black), 57 received a home visit and 42 received an access visit. Both groups had significantly worse ICF scores at the home/access visit compared to IRF discharge for most activities. Differences in scores between home visit and IRF were significantly greater than between access and IRF for bathing, upper and lower body dressing, bed/chair transfer, walking, and navigating stairs. The largest differences between home and access visits were for walking (β = 1.05 95% CI 0.46 to 1.64) and going up and down stairs (β = 0.87 95% CI 0.25 to 1.49). Conclusions: Participants with stroke had greater difficulty performing daily activities in both home and access visits than at the IRF, but observed differences were greater for home visits than access visits. While access visits may be beneficial to anticipate functional abilities in the home when home visits cannot occur, visiting the home to directly observe patients' performance is ideal. Trial registration: Registered on 3/26/2018 at clinicaltrials.gov, NCT03485820. [ABSTRACT FROM AUTHOR]

Background: Fall prevention education can increase knowledge of fall risks and promote behavior changes to help reduce the incidence of falls among older adults. Fall Prevention Bingo (FPB) was created as an engaging tool to deliver fall prevention education to older adults. Purpose: To evaluate the effects of FPB on older adults' knowledge of fall risks, their readiness to make health behavior changes, and their attitudes toward reducing personal risks for falls. Methods: A total of 110 community-dwelling older adults (mean age: 72.0 ± 10.2 years) participated in the study across 11 senior or community centers in St. Louis, Missouri, USA. Results: Knowledge of fall risk behaviors increased after playing FPB (p =0.007). A ceiling effect occurred when measuring readiness to change. Participants reported that FPB was informative and interactive. Discussion: FPB is a fun and engaging educational tool that can be used to improve knowledge of fall risks among older adults. A ceiling effect obtained from the Stages of Change Score indicated that most participants had already made behavior changes to reduce risks for falls. Translation to Health Education Practice: FPB can be an effective method to deliver fall prevention education in community settings.

INTRODUCTION: Adults with Down syndrome (DS) have an increased risk of Alzheimer's disease (AD) dementia, often showing neuropathological indicators by age 40. Physical function and activities of daily living (ADLs) are understudied areas of function that may inform dementia risk. We investigated associations among age, physical function (gait/balance, grip strength, and lower extremity strength), ADLs, and dementia risk symptoms in adults with DS. We hypothesized that compromised physical function and lower independence with ADLs would be associated with an informant/caregiver‐reported measure of dementia risk symptoms. METHODS: A secondary analysis for this cross‐sectional study was completed using data from two academic research centers with 43 adults with DS (age 30 ± 12 years). We examined the association of dementia risk symptoms, captured through the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID), with physical function (timed up and go [TUG], sit‐to‐stand [STS], grip strength) and ADLs (Waisman Activities of Daily Living Scale). A linear regression model for the continuous dementia risk measure in the DSQIID used a log transformation of (1 + log(Y + 1)) to account for a high zero count. Wilcoxon rank‐sum tests were used to assess differences in the physical function measures, DSQIID questionnaire, and Waisman ADL by dividing mean age categories. RESULTS: Higher DSQIID scores were associated with lower independence with ADLs (β = −0.103, p = 0.008), slower gait times (TUG; β = 0.112, p = 0.034), and impaired lower extremity strength (STS; β = 0.112, p = 0.017) and grip strength (β = −0.039, p = 0.034). DSQIID scores differed significantly between the ≥30 and <30 age groups. Participants ≥30 years of age scored 5 points higher on the DSQIID than participants <30, suggesting that age was associated with greater dementia risk. DISCUSSION: Greater dementia risk symptoms were associated with age, lower physical function scores, and independence with ADLs, suggesting that declines in physical function and ADLs may be early indicators of subsequent dementia risk in adults with DS. Highlights: We explored the association of physical function and activities of daily living (ADLs) in aging adults with DS and their relationship with informant/caregiver report of dementia risk symptoms.Our findings demonstrated a significant relationship between a higher number of dementia risk symptoms observed and lower independence with ADLs, and impaired gait/balance, grip strength, and lower extremity strength.Further research with larger longitudinal studies is necessary to investigate any causative relationships among physical function, ADL function, and dementia risk symptoms. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Determine whether race predicts fear of falling (FOF) in older adults with a history of previous fall(s) while controlling for mobility performance, activity of daily living (ADL) independence, age, gender, and education. We examined predictors of FOF among community-dwelling older adults using data from two longitudinal randomized controlled trials that implemented fall prevention programs for community-dwelling older adults. Two hundred fifty-nine participants were included in the analysis; 145 reported low FOF, while 59 reported high FOF. After controlling for mobility performance, ADL independence, and sociodemographic factors, Black older adults were more likely to report FOF (OR = 2.17) compared to White older adults. Overall, older adults with lower mobility performance/functioning scores were more likely to have FOF (OR = 0.08). Older adults (aged ≥65 years) who are at higher risk, based on a prior history of fall(s), are more susceptible to developing FOF, as evidenced by the older adults within this study, due to limited mobility performance and functioning. Black older adults may be at greater risk of FOF than their White counterparts based on previous fall history and level of functional mobility. Incorporating measures of objective performance-based function along with measures of psychological factors are viable methods to identify and address FOF within Black older adult populations. [ABSTRACT FROM AUTHOR]