SeeInMe: Digital Profiles Facilitating Person-centered Coordinated Care for People with Dementia

Project Abstract Across care settings, persons with dementia (PwD) engage with healthcare professionals and support staff with diverse competencies, backgrounds, and training levels. Conveying a PwD's unique and fluid needs often falls upon informal caregivers and assisted living community (ALC)/memory care community (MCC) managers, ultimately impacting the quality of interactions and care across the diverse landscape of long-term service and support systems. Demands such as managing care team relationships, knowledge transfer, and the evolving landscape of Alzheimer's disease (AD) and AD-related dementia (ADRD) care results in 40% of informal caregivers reporting significant emotional stress with 74% concerned about neglecting their own well-being. This stress often prompts the premature institutionalization of PwD. Hence, acknowledging the vital role of informal caregivers and ALC/MCC managers, along with their considerable burdens in coordinating this complex care ecosystem, is essential. While technology can serve as a pivotal enabler of person-centered coordinated care (PCCC) for PwD, given that processes integral to care can be facilitated with technological support, the current absence of a centralized information repository about PwD, created by the informal caregiver and shared among the care community, has resulted in fragmented and incongruent care delivery. The central purpose of this SBIR Phase 1 R43 research study is to develop and test SeeInMe, a consumer- generated (PwD/caregiver), HIPAA-compliant digital personal health profile for PwD. SeeInMe will foster PCCC while reducing caregiver burden associated with information sharing by enabling ALC/MCCs to partner with and empower family members, informal caregivers, and residents to create, in their own words, a secure, abridged, easily accessed, edited, and shared, interactive biopsychosocial profile for a PwD. The project team consists of experts in tech and data science, clinical psychology, and gerontological health and AD/ADRD, with support from the senior living trade association, Argentum, and the University of Kansas NIA-designated Alzheimer's Disease Research Center. We will engage stakeholders in designing a dynamic, HIPAA-compliant care guide for PwD with key innovations across three areas: 1) Personalized profile, 2) Interactive dashboards with analytics, and 3) Seamless interface. The proposed research will be accomplished with three aims: Aim 1) Conduct formative research to enhance and tailor SeeInMe for PwD, their family and informal caregivers, and their care community; Aim 2) Upgrade the current SeeInMe psychosocial platform by integrating features discovered in Aim 1; and Aim 3) Beta test the usability, acceptability, and satisfaction of the enhanced SeeInMe Gen 2 platform with a diverse sample of PwD, informal caregivers, ALC/MCC staff, and clinicians. Successful completion of Phase 1 is expected to produce a market-ready, scientifically informed, and user validated HIPAA-compliant version of SeeInMe. Phase II will involve a randomized clinical trial powered to examine the impact of SeeInMe on PCCC and reduction of caregiver burden.