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.

Support From a Distance: How Home Care Agencies Influence Paid Caregiving in the Home

Paid caregivers (e.g., home health aides, personal care attendants, and other direct care workers) who care for functionally impaired older adults in the home frequently report that while rewarding, their work is logistically, physically, and emotionally demanding. Unlike direct care workers in institutional settings, paid caregivers work with care recipients one-on-one in private settings and often have limited contact with or support from their employers. These factors contribute to high workforce turnover and may impact the quality of patient care. In this symposium, we explore ways that home care agency policies and practices influence the experience of giving and receiving care in the home. First, Bryant et al. describe the range of agency-based models and the impact of workplace design in creating supportive working environments. Next, Fabius et al. explore characteristics of direct care agencies across Maryland, with implications for worker training and support. Reckrey et al. describe the differing perceptions of aides, caregivers and providers around the role agencies play in defining paid caregivers’ roles, and how this may lead to conflict within the caregiving team. Finally, in the context of COVID-19, Franzosa et al. examine communication and coordination between Veterans Affairs-paid agencies and home health aides during the pandemic, while Tsui et al. present a case study of an agency’s efforts to support paid caregivers through group support calls. Together, these studies highlight challenges in the structure, organization and perceptions of home care agencies, and identify potential avenues for agencies to support paid caregivers and their clients.

Who Provides Care in a Crisis? Family Caregivers’ Experiences of Home Care During the COVID-19 Pandemic

Many homebound individuals with dementia rely on both paid caregivers (e.g., home health aides, home attendants, other homecare workers) and family caregivers to live safely at home. We conducted semi-structured interviews with 15 family caregivers of individuals with severe dementia receiving home-based primary care in NYC to explore how caregiving changed during the COVID pandemic. Most individuals with long-standing paid caregivers experienced infrequent home care disruptions. In fact, paid caregivers were often the primary and sometimes only individuals to provide direct care; family caregivers themselves often stayed away and managed care from a distance. While most family caregivers described heightened attention to infection control, guidance about COVID prevention and safety rarely came from home-based primary care providers or home care agencies and instead was considered “common sense.” These findings confirm the essential role paid caregivers play in home-based dementia care teams.

Disruptions and Adaptations in End-of-Life Care Delivery for Homebound Patients During COVID-19

The initial COVID-19 pandemic surge in New York City caused widespread delays and disruption in end-of-life services. This study examined the impact of disruptions among homebound adults in an HBPC practice who died between March-June 2020. Through an in-depth mixed-methods chart review, we identified 113 patient deaths (mean age: 87, 73% female, 67% with dementia). Forty-nine (43%) of deaths occurred in April 2020. Through a content analysis of clinician notes, we identified key COVID-related themes, including a shift to intensive phone-based care and to a lesser degree, telehealth; delays in hospice referrals and admissions; and an increase in treatment for behavioral symptoms. Our analysis also demonstrated the central role of family and paid caregivers in coordinating care, and efforts by patients, caregivers and providers to avoid hospital admissions. These findings demonstrate the importance of care coordination across medical, home and community partners to support end-of-life care in emergencies and beyond.

Whose Decision Is It? Perspectives on Agency Involvement in Determining Paid Caregivers' Roles in Dementia Care

Individuals living at home with dementia often rely on a team of caregivers and health care providers. Yet little is known about how the role of paid caregivers within this team is determined. We identified patients with moderate to severe dementia (n=9) and conducted individual interviews with their care teams (family caregiver, paid caregiver, physician) (n=27) to explore perspectives on paid caregiver roles. Participants disagreed on who determined the paid caregiver’s role. Agencies were perceived to set limitations on the scope of care (particularly by physicians) but agency care plans were often seen as inadequate and failing to capture important nuances of care. Most family caregivers believed they should guide what paid caregivers did in the home, while most paid caregivers reported relying on their own experience and knowledge. Understanding and addressing these differing perceptions is critical to improving the quality of paid care in the home.

Translating Behavioral Interventions: It Is More Than Just Language

In the United States, over 5 million people are living with Alzheimer’s disease or a related dementia. Providing care are an estimated 16 million unpaid caregivers and millions of paid caregivers. Neuro-psychologic symptoms (NPS) such as agitation, aggression, depression, rejection of care, and apathy are almost universal in persons living with dementia (PLwD). Caring for NPS often leads to poor physical, mental and financial outcomes. There have been hundreds of non-pharmacologic interventions tested and found efficacious to help caregivers with NPS and daily care challenges. However, very few of these interventions have been widely adopted in different languages and settings. One promising intervention used in various countries is the Tailored Activity Program (TAP). TAP, delivered by occupational therapists, customizes activities to PLwD’s current capabilities and prior roles and interests and instructs caregivers in their use. This session will examine TAP’s reach and how it has been translated and adapted. First, Ms. Sokha Koeuth will present modifications needed to the program to facilitate widespread dissemination including placing training in the program online and virtual. The next two presentations will discuss adaptations to TAP in different countries and cultures; Dr. Marcia Novielli will present TAP-Brazil, and Dr. Jean Gajardo Jauregui will present TAP-Chile. Finally, Dr. Katherine Marx will examine the adaptations needed to place TAP into a long-term care setting with both family and paid caregivers. These papers highlight the cross-cultural adaptations that need to be considered in taking a program from research to different real world clinical and community-based settings. Behavioral Interventions for Older Adults Interest Group Sponsored Symposium.

Engaging End Users in Designing Systems and Hardware for a Socially Assistive Robot

Development of low-cost robots to assist older adults requires the input of end users: older adults, paid caregivers and clinicians. This study builds on prior work focused on the task investigation and deployment of mobile robots in a Program of All-inclusive Care for the Elderly. We identified hydration, walking and reaching as tasks appropriate for the robot and helpful to the older adults. In this study we investigated the design specifications for a socially assistive robot to perform the above tasks. Through focus groups of clinicians, older adults and paid caregivers we sought preferences on the design specifications. Using conventional content analysis, the following four themes emerged: the robot must be polite and personable; science fiction or alien like; depends on the need of the older adult; and multifaceted to meet the needs of older adults. These themes were used in the design and deployment of the Quori robot.

Caregiving Together: The Relationship Between Paid and Family Caregivers in the Home

Family caregivers provide the lion’s share of care that allows older adults with functional impairment to remain living at home. Yet as care needs grow, many older adults and their families turn to paid caregivers (e.g. home health aides, personal care attendants, and other direct care workers) to provide additional support. While evidence suggests that paid and family caregivers work together to provide increasingly complex care at home, research that describes this important collaboration is limited. In this symposium, we present innovative and interdisciplinary research that highlights the overlap between family caregiving and long-term care workforce research. We begin by presenting two studies that focus on populations where paid caregivers may have outsized impact on family caregivers: Reckrey et al report that receipt of 20+ hours of paid caregiving per week was associated with less caregiver strain among family caregivers of those with advanced dementia and Falzarano et al report that home care hours mediated the association between caregiver stressors and negative effects of caregiving among long-distance family caregivers. Franzosa et al then describe home health aides’ perceptions of relationship dynamics as aides and family members negotiate care tasks in the home. Finally, Gallopyn et al explore scenarios where paid and family caregiver roles blur (e.g., family caregivers receiving payment for providing care, paid caregivers with extensive experience as family caregivers). Taken together, these studies describe critical ways paid and family caregiver experiences are intertwined and highlight the importance of ongoing research about this collaboration.