The Alzheimer's Association has been convening individuals living with dementia as stakeholders for nearly 2 decades. This article outlines the evolution of, and lessons learned from, the Association's leadership in stakeholder engagement. It will also highlight the contributions of the Association's Early Stage Advisory Group in the areas of public policy, programming and resources, medical and scientific advancements, and public awareness. In addition, this article will discuss the ways in which the research community has come to recognize the importance of including the voices of persons living with dementia in their work and has looked to the Association for guidance and leadership. Last, it will describe the future directions of the Association with regard to increasing the influence and profile of these key stakeholders.

With the emergence of new clinical trial data on disease‐modifying therapies in several. Alzheimer's disease (AD) studies, the Alzheimer's Association convened individuals living with AD to gain their perspective on meaningfulness and new treatments. A total of 30 Alzheimer's Association National Early Stage Advisory Group members participated in a focus group or an online survey to gain insights on what is wanted from a first‐in‐class treatment that could stop the progression of their disease at the earliest stage. Participants felt that researchers and regulators need to consider personal meaningfulness alongside clinical meaningfulness. At the same time, individuals living with AD felt that access, education, choice, and affordability were all important considerations moving forward.

Caregivers are often financially impacted, through health care costs, long-term care costs, and decreased income. A financial literacy program, Managing Money: A Caregiver’s Guide to Finances, was developed to provide information on financial impacts in caregiving. The virtual program was delivered synchronously with a live presenter through an online platform and was rated with high acceptability. The virtual program was then shifted to an online format. Changes included removing the live presenter and group format in favor of a voiceover and self-paced movement, the addition of videos, and online resources. The asynchronous, self-paced online delivery of the program was evaluated through a survey of 146 caregivers. Participants had a mean age of 45.85 (SD=5.65); 55% female; 75% White; 46% cared for their grandparent and 45% to their parent. A Likert scale was utilized to indicate satisfaction with the program (1=strongly disagree, 5=strongly agree). Overall, participants indicated that the program provided important information on managing money (M=3.97, SD=.83); helped to understand the content (M=3.89, SD=.91); was easy to read and understand (M=3.99, SD=.90); and would recommend the program (M=3.91, SD=.84). The explanation of content areas were rated on a Likert scale (1=poor, 4=excellent); participants rated areas including having conversations about finances (M=3.05, SD=.80); avoiding financial fraud and abuse (M=2.98, SD=.81); covering care costs (M=2.98, SD=.81); and organizing legal plans (M=3.09, SD=.80). Participants reported no difficulties that needed to be resolved when moving through the program. Overall, both the virtual and online formats were acceptable and feasible to caregiving populations.

Over 50 million informal caregivers provide care to an older adult age 50 or older. Negative financial impacts include significant out-of-pocket expenses, decreased income and future earnings. The program, Managing Money: A Caregiver’s Guide to Finances, was developed to address the lack of evidence-based programs and evaluated using a randomized control trial across 5 time points: Time 1 (baseline); Time 2 (after condition completion); Time 3 (30 days after Time 2); Time 4 (60 days after Time 2); and Time 5 (90 days after Time 2). The mean age of participants was 55.45 (SD=14.85); 80% female; 72% White and 69% married. Forty-six percent provided care to their parent/in-law, 36% to a spouse/partner, and 40% were employed full-time. Participants were randomly assigned to the program (N=76) or waitlist condition (N=98). No significant differences on demographic or care context variables were found between conditions. A 2 x 5 repeated measures analyses examined significant change across time based on condition. For significant outcomes, post-hoc analyses examined whether change was short-term (T2,T3); long-term (T4,T5); or both. Results found: 1) significant short- and long-term improvements for Unmet Needs (F(1,4)=8.34,p=.01); Self-efficacy (F(1,4)=4.27,p=.01); and Behavioral Intentions (F(1,4)=3.63,p=.01) and 2) significant long-term improvements for Unmet Needs Distress (F(1,4)=5.82,p=.01) and Behavioral Actions (F(1,4)=4.55,p=.01). Results indicated the program was efficacious in positively impacting key financial preparedness measures. Discussion highlights key study elements including program accessibility and scalability; generalizability of findings and limitations; and contextualizing results within the larger literature.

Over 40 million informal caregivers provide care to adults aged 50 or older with a chronic illness. In addition to the negative health and well-being impact, caregivers experience financial difficulties including lost income, retirement benefits, future earnings, and unanticipated out-of-pocket costs. Few evidence-informed programs exist to assist caregivers in understanding and managing these financial tasks. This poster presents preliminary acceptability data from 71 caregivers who completed the newly developed Managing Money: A Caregiver’s Guide to Finances program. The 60-minute program was delivered online by trained community educators and addressed caregiving costs/impacts; future planning; initiating conversations; avoiding financial abuse/fraud; and identifying needs. Participants (Mage = 59.45, SD = 11.31) were 87.32% female with 77.46% self-identified as White, 9.86%, as Black, and 8.45% as Hispanic/Latino. Using a Likert scale (1=strongly disagree to 5=strongly agree), participants indicated the program: 1) identified financial challenges (M= 4.11 ; SD = 0.73); 2) provided information for managing money (M = 3.99; SD = 0.64); 3) content was easy to read/understand (M = 4.49; SD = 0.61); 4) program length was appropriate (M = 4.18; SD= 0.68); and 5) activities were helpful (M = 4.13; SD = 0.69). Participants rated the program as very important (M = 4.54; SD = 0.82) and would highly recommend (M = 4.52; SD = 0.53). Results indicated the program was well-received by participants and highly acceptable. Discussion will highlight key program features designed to promote acceptability along with the importance of measuring acceptability for large-scale implementation along with next research steps.