Effective Recruitment Strategies for Community-Dwelling Persons Living With Dementia and Their Caregivers

Abstract Recruitment of diverse community-dwelling persons living with dementia (PLWD) and their caregivers (dyads) into randomized controlled trials (RCT) is challenging, time consuming and expensive. This presentation will describe community outreach efforts used over a one-year period to recruit dyads of PLWD and their caregivers in Healthy Patterns RCT. Community outreach yielded 296 inquiries, such that people expressed interest in joining the study. Of the 296 inquiries, almost all (95.6%) identified as African American, and 91(30.7%) consented to join the study. Presentations at senior centers yielded the highest number of inquiries (n=148), followed by staff presence at various community events such as health fairs and senior galas (n=145) and referrals (n=3). We found that community outreach was an effective recruitment strategy to generate inquiries among diverse PLWD and their caregivers to enroll in Healthy Patterns. We will discuss these strategies and provide suggestions for recruiting diverse dyads into clinical trials.


SLEEP, ACTIVITY, AND WELL-BEING IN PERSONS WITH DEMENTIA: FINDINGS FROM THE HEALTHY PATTERNS TRIAL
Chair: Nancy Hodgson Discussant: Darina Petrovsky Irregular sleep-wake patterns are common in persons living with dementia (PLWD), pose a great burden to caregivers, and are the principal causes of distress and institutionalization of PLWD.A growing body of research supports the importance of activity-based interventions to reduce the frequency and intensity of sleep wake disruption, reduce neuropsychiatric symptoms, and improve quality of life.To date, there are no studies linking sleep disruption and well-being with the nature and timing of activity.This session focuses on lessons learned from the Healthy Patterns Study -a randomized trial of a home-based activity intervention in 200 dyads of PLWD and their caregivers (NCT03682185).Session 1 focuses on the main findings from the clinical trial.Session 2 focuses on the cultural adaptation of the timed activity protocol to improve quality of life (QOL), improve sleep and reduce neuropsychiatric symptoms in older Latinos Session 3 describes the community outreach efforts used over a oneyear period to recruit a diverse sample of PLWD and their caregivers for the Healthy Patterns trial.Session 4 examine the relationship between caregiver mastery and neuropsychiatric symptoms in PLWD.Together these findings highlight the complex role of sleep and wake activity in promoting well-being in persons with dementia.We conducted a two-arm RCT with dyads of 200 persons living at home with dementia (PLWD) who reported sleep disruption and family caregivers.Components of the Healthy Patterns intervention included: 1) assessing PLWD functional status, preferences and interests; 2) educating caregivers on environmental cues to promote activity and sleep; and 3) training caregivers in timed morning, afternoon, and evening activities.Outcomes included: PLWD quality of life, sleep, and neuropsychiatric symptoms.Sleepwake patterns were assessed using wrist actigraphy and proxy-reported measures.The main intervention effects were tested using ANCOVA.The average age of participants was 73.4 years, 67% were female, 80% were African American/ Black).At 4 weeks, the intervention group demonstrated less sleep-related impairment (p = 0.0031) and reported higher quality of life than the control group (p = 0.0074).These results provide new fundamental knowledge regarding the effects of timing activity on sleep and well-being.

A CULTURALLY ADAPTED TIMED-ACTIVITY RCT FOR LATINOS WITH ADRD AND CAREGIVERS: FEASIBILITY, ACCEPTABILITY, AND EFFECTS
G. Adriana Perez, 1 and Liming Huang, 2 1.University of Pennsylvania School of Nursing, Phildelphia, Pennsylvania, United States, 2. University of Pennsylvania, Philadelphia, Pennsylvania, United States Latinos are twice as likely to develop Alzheimer's disease (AD) compared to non-Latino whites, yet, account for <2% of clinical trial participants in AD research.This randomized controlled trial examined the feasibility, acceptability and effects of a culturally-adapted timed-activity intervention designed to promote quality of life (QOL) and reduce behavioral symptoms in older Latinos with AD and their caregivers.Healthy Patterns [Pautas Saludables] was implemented among 40 Spanish-speaking dyads.Measures assessed at baseline and 4 weeks post-intervention, indicate improvements in sleep efficiency (p=.06) and QOL (p=.01) among intervention participants.Pautas Saludables was found to be feasible and acceptable.Intervention attendance rate was >90% with low attrition (n=0); no adverse events.Most (74%) rated timed-activity sessions as helpful and appropriate; 58% recommended refreshers.Results provide evidence that Latinos with AD will participate in clinical trials and can improve on key health outcomes, when interventions are adapted to meet their cultural needs.Recruitment of diverse community-dwelling persons living with dementia (PLWD) and their caregivers (dyads) into randomized controlled trials (RCT) is challenging, time consuming and expensive.This presentation will describe community outreach efforts used over a one-year period to recruit dyads of PLWD and their caregivers in Healthy Patterns RCT.Community outreach yielded 296 inquiries, such that people expressed interest in joining the study.Of the 296 inquiries, almost all (95.6%) identified as African American, and 91(30.7%)consented to join the study.Presentations at senior centers yielded the highest number of inquiries (n=148), followed by staff presence at various community events such as health fairs and senior galas (n=145) and referrals (n=3).We found that community outreach was an effective recruitment strategy to generate inquiries among diverse PLWD and their caregivers to enroll in Healthy Patterns.We will discuss these strategies and provide suggestions for recruiting diverse dyads into clinical trials.

THE ROLE OF CAREGIVER MASTERY IN ANXIETY SYMPTOMS IN PEOPLE LIVING WITH DEMENTIA
Yeji Hwang, 1 and Nancy Hodgson, 2 1.University of Pennsylvania, School of Nursing, Philadelphia, Pennsylvania, United States, 2. University of Pennsylvania, School of Nursing, philadelphia, Pennsylvania, United States Anxiety symptoms in people living with dementia (PLWD) are the most distressing symptoms for caregivers.While caregiving is bidirectional relationship, little is known how caregivers can influence anxiety in PLWD.The purpose of this study was to examine the relationship between caregiver mastery and anxiety symptoms in PLWD.Secondary data analysis was conducted using baseline data from Healthy Patterns Study.The conceptual model of Factors Associated with Behavioral and Psychological Symptoms of Dementia guided this study.Among the 169 study PLWD, 23.1% (n=39) reported having anxiety symptoms.In a multivariate logistic regression, adjusting for age, dementia stage, sleep, and depression, better caregiver mastery was significantly related to lower odds of having anxiety in PLWD (OR=0.87,p=0.046).These results suggest that interventions aimed at improving caregiver mastery may improve anxiety symptoms in PLWD.

ADDRESSING SYSTEMIC RACISM BY CREATING A DIVERSITY, EQUITY, AND INCLUSION DEPARTMENT INITIATIVE
Stephanie Chow, 1 Katherine Brown, 2 Martine Sanon, 2 Sasha Perez, 2 Amy Kelley, 1 and Noelle Marie Javier, 2 1. Icahn School of Medicine at Mount Sinai, New York, New York, United States, 2. Icahn School of Medicine at Mount Sinai Hospital, Icahn School of Medicine at Mount Sinai, New York, United States Background: Catalyzed by social injustice and worsening racial inequities highlighted by the COVID-19 pandemic, a diverse academic geriatrics and palliative medicine department in NYC launched a DEI initiative.This report presents key program components and lessons learned in launching this initiative in the interprofessional academic medicine setting.Methods: First, DEI core and departmental administration met 2-4 times/month to plan and review program activities, vision, and mission.The team conducted confidential roundtable discussions about DEI issues and 1:1 interviews to assess needs.A monthly Humanities, Arts, and Books (HAB) Initiative provided a safe space for discussion and learning.The HAB platform supported a longitudinal curriculum emphasizing (1) group discussion and self-reflection on DEI concerns, (2) knowledge dissemination including a "Learning Pathway" series, and (3) skill-based workshops.With each event, we collected anonymous feedback.Comments were systematically recorded and an engagement evaluation was conducted to iteratively shape future sessions.Departmental administration was engaged to track DEI-focused measures of recruitment, career advancement, and retention.Finally, we centralized DEI activities on a departmental website, including an anonymous online feedback box.Results: Quantitative and qualitative assessment of DEI initiatives are forthcoming.Metrics include DEI and professional development surveys, departmental demographic and diversity measures, increase in DEI-related projects and grants, and individual participation in DEI programs.Conclusions: Creating a strong and sustainable DEI initiative within an academic medical setting requires a passionate and diverse core team, deliberate backing by administration, and thoughtful dissemination of sensitive content in the midst of a highly charged social justice landscape.

OLDER VIETNAMESE HAVE THE HIGHEST PREVALENCE OF DISABILITY COMPARED TO WHITE AND OTHER ASIAN GROUPS
Hoang Nguyen, 1 Christina Miyawaki, 2 and Kyriakos Markides, 3 1.University of Texas Medical Branch at Galveston, Galveston, Texas, United States, 2. University of Houston,Houston,Texas,United States,3. University of Texas Medical Branch,Galveston,Texas,United States The COVID-19 pandemic has highlighted the vulnerability of older adults with pre-existing health conditions and disabilities.A 2011 study reported that Asian older adults had lower prevalence of disability compared to non-Hispanic white.We revisited the estimate a decade later using the recently released 2015-2019 Public Use Microdata Sample (PUMS) from the American Community Survey (ACS).We estimated the prevalence of six types of disability in adults aged 60 years and older who self-identified as Vietnamese, Chinese, Filipino, Japanese, Korean, Asian Indian, or non-Hispanic White.We also compared the risk for each disability type between Vietnamese and non-Hispanic White (reference group) using the adjusted (age, sex, marital status, education and poverty level) odds ratios.All analyses used survey weights for point estimate and the jackknife method for standard error.Significantly higher prevalence of limitations in independent living, self-care, cognitive function, and blindness were reported by Vietnamese than by non-Hispanic White.Vietnamese also had the highest prevalence in all six types of disability of the Asian groups examined.The adjusted odds ratio of limitations in independent living,

TO IMPROVE SLEEP: FINDINGS FROM THE HEALTHY PATTERNS STUDY
Miranda McPhillips, 1 LaShauna Connell, 2 Augustine Boateng, 2 Darina Petrovsky, 3 Justine Sefcik, 4 and Nancy Hodgson, 5 1.University of Pennsylvania, University of Pennsylvania, Pennsylvania, United States, 2. University of Pennsylvania, Philadelphia, Pennsylvania, United States, 3. Rutgers University, Philadelphia, Pennsylvania, United States, 4. Drexel University, College of Nursing and Health Professions, Philadelphia, Pennsylvania, United States, 5. University of Pennsylvania, School of Nursing, philadelphia, Pennsylvania, United States