Listen and you will see the person through the dementia

Dementia is an ever-increasing health and social problem, with a growing number of people being affected worldwide. As dementia progresses, dependency on others increases, requiring the presence of caregivers. Caregivers tend to focus on the diagnosis itself – dementia – which makes it difficult to see the person in their uniqueness. The person is there, and can be seen by listening, which requires time and communication skills. The voices of older adults living with several types of dementia, collected while working as a psychologist in a nursing home, are presented in the first person to bring forward the person they are. These excerpts of interactions illustrate the basic psychological need of relatedness, which is built through interaction, stories, and touch, and the needs of competence and autonomy. The framework of this paper encompasses validation therapy, person-centered care, and self-determination theory. Two conclusions emerge: Seeing the person through the dementia enables an adequate psychological assessment and a helpful supportive psychotherapy, and it also makes us acknowledge and help satisfy the three basic psychological needs of relatedness, competence, and autonomy.

Moving Toward Person-Centered Care: Valuing Emotions in Hospital Design and Architecture

The intangible value of emotions is often neglected in healthcare evaluations; however, it forms an important part of the hospital experience that needs to be taken into consideration to move toward person-centered care. This article conceptualizes how space and architecture may influence patient, family, and healthcare provider emotions. Building upon Gaston Bachelard’s Poetics of Space, theories on emotional design and architecture, as well as research in environmental design, we suggest several ways to value emotions in hospital design and architecture. The first theme explores several hospital spaces (the waiting room, the hospital room, the treatment room) using Bachelard’s phenomenology in order to show how to facilitate emotional security by catering to the individual needs of the user. The second discusses the overall hospital room environment, notably the influence of light, color, and sound on the patient’s emotional experience. The third explores architectural theorist Giuliana Bruno’s theory of e(motion) to explore the hospital space as vissuto, a space of lived experiences, that invites us to rethink the design and architecture of hospital spaces to allow for patient participation. The article also gives suggestions of qualitative, person-centered methodologies that can be used to move forward this debate.

Creating, Recruiting, and Developing: Key Tasks and Their Challenges

The ECHO model is uniquely suited to developing education for a wide range of agencies and providers serving the needs of older adults with IDD. The program’s structure and its educational philosophy depend on modeling teamwork in both the hub and the spokes. Recruitment of participants included paid caregivers, healthcare practitioners, and direct service providers, focusing on team participation at each site. In developing the curriculum, it was critical to recognize the roles played by each sector, as well as the complementary contributions of others. Consequently, curriculum content needed to be multidisciplinary and multifocal, and recognize both the breadth of contributors and time limits in selecting content for each session. Didactic presentations and case studies embodied these features. Priorities included best practices in person-centered care; differential diagnoses; and physical, social, and environmental factors. The facilitators of, and challenges to, these priorities offer implications for advancing educational programs with similar objectives.

Measuring What Matters Across International Long-Term Care Settings

Measuring what matters most to residents, relatives and staff in residential long-term care settings is critical, yet underdeveloped in our predominantly frailty and deficits-focused measurement frameworks. The Worldwide Elements to Harmonize Research in Long-Term Care Living Environments (WE-THRIVE) consortium has previously prioritized measurement concepts in the areas of care outcomes, workforce and staffing, person-centered care, and care context. These concepts include knowing the resident and what matters most to the resident, and outcomes such as quality of life, and personhood. We present findings of our currently recommended measures, including both general population and dementia-specific measures, such as the Person-Centered Care Assessment Tool (PCAT), the Personhood in Dementia Questionnaire (PDQ), and the ICEpop CAPability Measure for Older People (ICECAP-O). We also describe remaining gaps in existing measures that will need to be addressed to fully specify common data elements focused on measuring what matters most to residents, relatives and staff.

We're Still Very Much in Limbo: Providers' Perspectives on Implementing a Person-Centered Project

Background The Preferences for Everyday Living Inventory assists nursing home (NH) providers in assessing residents’ preferences and can be used to make Preferences for Activity and Leisure (PAL) Cards, which are personalized 5x7 laminated cards that reflect a resident’s recreation and leisure preferences. We sought to understand the barriers and facilitators to implementing PAL Cards in NH communities during COVID-19. Methods NH providers from five states (n=29) were recruited to create PAL Cards in their communities. Monthly coaching calls with project champions assessed the implementation process. Calls were recorded, transcribed verbatim, checked for accuracy, and coded via thematic analysis. Results Four themes emerged: Adapting to COVID, Preoccupied with COVID, Future Thinking, and PAL Cards Filling the Gaps. Conclusion Some providers were successful adapting to COVID, while others struggled to implement a new program during the pandemic. Those that were successful expressed how PAL Cards helped promote person-centered care.

Resident and Family Engagement in Care Conferences: Important Processes and Supporting Strategies

Self-determination is a core value of person-centered care. Research has shown residents and families want to be involved in decisions about care. Care conferences are one existing structure where residents and families can engage in decision-making about care goals. However, there are few tools to support effective engagement. To inform future tool development, this study sought to understand what resident and family stakeholders value about engaging in care conferences. In virtual meetings, 16 stakeholders identified 3 key areas of engagement: being informed about health/well-being, influencing care goals, and advocating for needs. They indicated current approaches do not achieve these engagement goals, which is particularly problematic during COVID when families cannot engage in person. Stakeholders offered ideas for supporting engagement such as provision of data before the conference. The study has implications for individualizing care conferences and encouraging resident and family engagement in decision-making both during and beyond COVID.

Delivering Person-Centered Care During a Pandemic: Stakeholder Perspectives

Person-centered care (PCC) is an approach to care that both nursing homes (NH) and assisted living (AL) communities strive to provide. PCC is a philosophy that recognizes knowing the person and honoring individual preferences. However, when COVID-19 emerged, the NH and AL environments were ground zero for infection spread and disproportionate numbers of deaths among residents. As a result, many practices changed dramatically in efforts to reduce the transmission of COVID-19 in these communities. The purpose of this symposium is to discuss several projects that can speak to the impact of the pandemic on stakeholder efforts to provide PCC. First, Dr. Roberts presents feedback from residents and family members on the challenges COVID-19 created for family involvement in care conferences. In the second study, Dr. Behrens examines focus group data from direct-care nurses on their perceptions of delivering PCC related to risk of harm to staff and residents. The third study presents the voices of activities professionals who were implementing a PCC quality improvement project to communicate resident preferences, which illustrates both the importance of PCC during the pandemic, but also the challenges implementing during the pandemic. Fourth, the Kansas PEAK 2.0 program used provider feedback to direct and inform program responses through components such as consistent staffing. Finally, Dr. Zimmerman presents qualitative data from over 100 AL administrators, medical, and mental health care providers on their experiences pivoting during COVID-19. Our discussant will explore the implications of these studies in terms of the future of PCC in residential settings.

Person-Centered Care for Family Caregivers: Co-Designing an Education Program for the Healthcare Workforce

Background Research recommends the healthcare workforce receive competency-based education to support family-caregivers [FCGs}. typically, education has been directed at FCG’s to increase their care skills rather that at healthcare providers to provide person-centered care to FCGs. Objectives: We present the co-design process used to create a competency-based education program for the healthcare workforce that ensures a person-centered focus on FCGs and introduce our Health Workforce Caregiver-Centered Care Education. Approach: Co-design is the act of creating with stakeholders to ensure useable results that meet stakeholder’s needs. We began by coining the concept “caregiver-centered care,” defined as a collaborative working relationship between families and healthcare providers aimed at supporting FCGs in their caregiving role, decisions about care management, and advocacy. From this definition we co-designed, then validated the Caregiver-Centered Care Competency Framework in a Delphi Process. Stakeholders (n= 101) including FCGs, providers, policy makers, community organizations, researchers, and educational designers then used effective practices for health workforce education to co-design the ‘foundational’ level of a Caregiver Centered Care education. Results Teaching and learning resources include six competency-aligned educational modules with videos and interactive exercises that encourage reflection. With the COVID-19 pandemic, we moved the education online (caregivercare.ca). In the first four months online, 815healthcare providers completed the education. We continue to use mixed methods to evaluate the Caregiver-Centered Care Education, for acceptability and effectiveness, in five care contexts (primary, acute, home, supportive living, long-term care). Conclusion We expect that our education will support caregiver-centered care in all healthcare settings.

Person-Centered Care Post-Pandemic in Rural U.S. Settings: Use of WE-THRIVE Measures

Frontier communities are rural counties that are sparsely populated with limited resources to provide residential long-term care; COVID-19 has heightened these barriers and adversely affected residents, their families and staff. This study describes the feasibility of implementing recommended WE-THRIVE measures in one residential long-term care setting in a frontier community in the rural Midwest, and the capacity for administrative leadership to draw upon results of measures to implement person-centered care post-pandemic. During the COVID-19 pandemic, early efforts to advance person-centered care in the setting were displaced by a focus on infection control and containment. WE-THRIVE measures assess person-centered care following immunization distribution, and are discussed in terms of how to develop a dashboard to ‘de-escalate’ a COVID-19 focus and rebuild momentum towards person-centered care. Particular attention is given to the context of measurement, including data sharing and measurement burden, to inform advancing person-centered long-term care in other frontier communities.