PPA Tele-Savvy: Developing an Online Intervention with Caregivers of Persons with Primary Progressive Aphasia

Abstract Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer’s disease and is characterized by a progressive loss of specific language functions with relative sparing of other cognitive domains until later stages when widespread cognitive decline consistent with generalized dementia is more prevalent. PPA tends to appear earlier than most dementias, in late middle-age, and can result in a high degree of psychological and economic burden for the family. Thematic analysis of PPA caregiver studies reveal families are learning to adapt to not only declining language across communicative contexts and domains, but concomitant behavioral, social communication and personality changes over time. While there are several evidence-based dementia caregiver interventions, none are specifically designed for the PPA family caregiver. This pilot project, funded by the Emory University Roybal Center is the adaptation of an evidence-based on-line psychoeducation program (Tele-Savvy) to address the unique challenges facing informal caregivers of those living with PPA and to help these caregivers achieve mastery within this context. PPA caregivers have been engaged through focus groups to identify their most pressing caregiving challenges and how the existing Tele-Savvy curriculum should be adapted to meet their needs. Synchronous and asynchronous video modules have been designed to address: PPA education, the impact on dyadic connection and caregiving challenges and communication strategies specific to PPA. The Tele-Savvy central processes of coaching and de-briefing will also be pilot tested and refined.

workshop on dementia literacy, followed by two months of advocacy in Taichung City, Taiwan.Students were divided into 14 advocacy groups and the outcome reports were categorized qualitatively using content analysis.The results showed that students were from nine departments and over one-quarter having a dementia loved one in the family.Four innovative categories were developed, including (1) dementia literacy for students and the public; (2) dementia friendly action plans; (3) dementia caregiver's advocacy and (4) reducing dementia stereotypes.Highlights included students using social media to promote dementia literacy, face-to-face experiences to inform public education, dementia education on early onset dementia and using diverse bio-psycho-social angels to evaluate dementia.Students expanded advocacy to many social media, innovations and target areas, including Facebook, Instagram, Google spreadsheet, stickers, postcards, illustration of children's books and public announcement.This paper revealed that younger generations used many advocacy methods that were thinking outside of the box.In conclusion, dementia is no longer an elder's business but young adults can bring technological, inter-generational and cultural innovations into fulfilling the goals of Dementia Global Action Plans.

KEY FACTORS IN INTERVENTION IMPLEMENTATION, FIDELITY, AND SUSTAINABILITY
Carey Sherman, 1 Kate Gordon, 2 and Kenneth Hepburn, 3 1.Family Care Strategies,LLC,Ann Arbor,Michigan,United States,2. Spilane Consulting,Columbia,Maryland,United States,3. Emory University,Atlanta,Georgia,United States As part of an NIA-supported effort to develop an online course to train individuals to lead the evidence-based Savvy Caregiver program and to orient sponsoring organizations to the program, we conducted semi-structured interviews to assess success and sustainability "best practices".Interviews were conducted with 17 leaders and trainers from eleven Savvy-providing organizations.Analysis of these interviews identified two main themes associated with successful program implementation: leadership commitment and trainer ownership.Paramount to success appears to be leaders' clear understanding of and enthusiastic commitment to the value of the Savvy program to the organization's constituents.This translated to careful selection, training, management and on-going development of Savvy program trainers.It contributed to leaders' appreciation of Savvy as a gateway for clients to seek out other programs and services from the organization, while the gathering of meaningful evaluation data (using established outcome-assessment instruments) contributed, in several cases, to garnering more lasting support to deliver the program.Organizations' commitment to the program was demonstrated by securing the kinds of adequate and appropriate training, typically involving both instruction and modeling, for Savvy program leaders.These efforts fostered a sense of ownership among the leaders -the sense that the program had positive value for the caregivers served.These findings should be of interest both to scholars engaged in the development of interventions and for organizations implementing them.Taken together, the themes highlight several factors for program implementation that maximize the chances of maintaining fidelity to core program principles and ensuring its sustainability.

PIVOTING DURING THE PANDEMIC: A CASE STUDY OF THE SENIOR COMPANION PROGRAM PLUS
Noelle Fields, 1 Ling Xu, 1 Erin Roark, 2 Sruthi Sundar, 2 Ishan Williams, 3 and Joseph Gaugler, 4 1.University of Texas at Arlington, Arlington, Texas, United States, 2. The University of Arlington,Texas,United States,3. University of Virginia,Charlottesville,Virginia,United States,4. University of Minnesota,Minneapolis,Minnesota,United States Introduction: Growing research supports the use of older volunteers to provide respite and community-based assistance to persons with ADRD and their caregivers.This study explores the impact of COVID-19 on a face-to-face, peer-led psychoeducational intervention for African American ADRD family caregivers, the Senior Companion Program Plus (SCP-Plus), and its subsequent need to 'pivot' during the pandemic.Method: The SCP-Plus was a randomized control trial across three states that assessed program impact on ADRD family caregiver stress/burden, coping, and social support.In spring 2020, the SCP-Plus intervention was halted because of the potential risk to participants due to COVID-19 (n = 20 enrolled dyads).In an effort to maintain rapport and trust, critical to retention in research studies, team members began weekly (March-April) and then bi-weekly calls (May-December) for the purpose of providing a social check-in and to provide updates on the status of the intervention.Results: A total of 396 calls lasting approximately 10 minutes each were completed.Participants shared concerns around safety, access to food/supplies/masks/testing, feelings of stress and loss, concern for others, and the importance of technology as a means of social connection.Although the intervention aspect of the SCP-Plus ultimately ended due to COVID-19, information gleaned from these check-ins were used to pivot the study.The study moved forward by using a descriptive phenomenological approach to capture dyads' lived experiences during COVID-19.Discussion: Overall, purposeful participant engagement through weekly/bi-weekly phone calls suggests that this is a promising strategy for participant retention as well as for pivoting research.Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer's disease and is characterized by a progressive loss of specific language functions with relative sparing of other cognitive domains until later stages when widespread cognitive decline consistent with generalized dementia is more prevalent.PPA tends to appear earlier than most dementias, in late middle-age, and can result in a high degree of psychological and economic burden for the family.Thematic analysis of PPA caregiver studies reveal families are learning to adapt to not only declining language across communicative contexts and domains, but concomitant behavioral, social communication and personality changes over time.While there are several evidence-based dementia caregiver interventions, none are specifically designed for the PPA family caregiver.This pilot project, funded by the Emory University Roybal Center is the adaptation of an evidencebased on-line psychoeducation program (Tele-Savvy) to address the unique challenges facing informal caregivers of those living with PPA and to help these caregivers achieve mastery within this context.PPA caregivers have been engaged through focus groups to identify their most pressing caregiving challenges and how the existing Tele-Savvy curriculum should be adapted to meet their needs.Synchronous and asynchronous video modules have been designed to address: PPA education, the impact on dyadic connection and caregiving challenges and communication strategies specific to PPA.The Tele-Savvy central processes of coaching and de-briefing will also be pilot tested and refined.

FAMILY CAREGIVERS AND SUPPORT: IMPLICATIONS FOR WORK STRAIN AND FORMAL SERVICE USE Joseph Svec, and Jeongeun Lee, Iowa State University, Ames, Iowa, United States
In the US, many employed caregivers make professional adjustments, exacerbating already tenuous balances between work and life.Using the framework of the Stress Process Model (SPM), current research examines the sources of support (both formal and informal) and the contextual factors that facilitate or impede caregiver support.In this research, we examine whether and to what extent caregiver work strain is ameliorated by the presence of additional family caregivers and formal service use.This study utilizes data provided by the National Study of Caregiving (NSOC) data.Using panel methods for the pooled waves, we analyze the associations between workstrain and the number of additional caregivers with utilization of formal support (such as paid service support).Preliminary analyses align with the Stress Process Model as additional caregivers for each respective care-recipient is associated with lower levels of work strain.On the other hand, utilization of formal services (paid help and Medicaid funding) is positively associated with work strain.These findings suggest that the number of additional caregivers can reduce the negative impact of caregiving on work related strain among employed caregivers.That is, multiple caregivers may be more reflective of cooperative arrangements which offset work disruptions that occur with the onset of caregiving.In addition, formal sources may more frequently be used as a last resort to address caregiver burnout.Ongoing analyses are examining changes in the number of caregivers and its impact on disruptive work event, which could lead to financial outcomes for caregivers.

INTERDISCIPLINARY COMMUNITY-BASED SUPPORT FOR CAREGIVERS OF INDIVIDUALS LIVING WITH DEMENTIA
Gina Tucker-Roghi, 1 Jamie Escoubas, 2 Renee Tolliver, 2 and Sarah Tucker, 2 1. Dominican University of California, SAN RAFAEL,California,United States,2. Sonoma County Council on Aging,Santa Rosa,California,United States Evidence indicates family caregivers of individuals living with dementia (ILwD) are at risk for diminished physical and mental health; which may decrease their quality of life and directly impact their ability to provide care.An interdisciplinary approach to self-care and skill-building for caregivers is provided in a virtual support group offered by Council on Aging in Sonoma County, CA.As part of the nonprofit's Adult Day Program, the group is offered to client caregivers and has two goals: First, creating a communitybased, long-term support system for ILwD who are agingin-place; second, fostering a safe and supportive community for family caregivers, by providing opportunities to collaborate with peers and an interdisciplinary team that includes a Marriage and Family Therapist (MFT), an Occupational Therapist (OT), and a Recreation Therapist (the day program manager).The closed group model established through eight weekly sessions builds trusting relationships in a frame that combines: the OT client-centered and collaborative approach to problem-solving everyday challenges of caregiving, the MFT skills of creating a safe space for discussion and deeper exploration, and program staff insights regarding the ILwD's current interests and abilities exhibited during Day Program activities.Sessions include an emotional check-in by group members; a brief overview of best-practices and common caregiving concerns related to a weekly topic; and an opportunity for caregivers to explore the integration of best-practices into daily routines, while also attending to their well-being as caregivers.Program evaluation and results related to the program's effectiveness and implications for scalability will be discussed.

PSYCHOSOCIAL INTERVENTIONS FOR PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS IN PRIMARY CARE
Lou Frankenstein, and Georg Jahn, Chemnitz Technical University, Chemnitz, Sachsen, Germany Psychosocial interventions, such as occupational and behavioral therapy are effective opportunities to support people with dementia and their caregivers in adapting to the cognitive and behavioral changes and the resulting challenges in everyday life they are facing.However, psychosocial interventions do not seem to have found their way into routine care yet.We wanted to get an insight into the knowledge and attitudes general practitioners have about occupational and behavioral therapy.In an online survey we asked medical students about the relevance of dementia, occupational therapy, and behavioral therapy during their studies.In another online survey we asked practitioners what they had learned about these topics and to what extent they are making use of psychosocial interventions.Then semi-structured interviews were carried out with general practitioners all over Germany, exploring their experiences with dementia and psychosocial interventions in primary care as well as their expectations regarding interdisciplinary cooperation.It became obvious that psychosocial interventions are not conveyed sufficiently within medical school.A lack of occupational therapy prescriptions for people with dementia seemed to result from uncertainties regarding the content of the approach and the budgeting of the prescriptions.Barriers for prescriptions of Darby Morhardt, 1 Angela Roberts, 2 Alyssa Penn, 2 Allison Lindauer, 3 Emily Rogalski, 1 Sandra Weintraub, 1 and Kenneth Hepburn, 4 1.