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.

Implications of the COVID-19 Pandemic on Adult Day Services

Adult day service (ADS) centers serve an important role in care provision for people living with dementia (PLWD). These programs provide socialization, activities, and access to many therapies for PLWD. Additionally, they offer respite to family caregivers so they can work, run errands, and recharge. In March 2020, like much of the nation, ADS sites across the nation were shut down. This left many PLWD and their caregivers without access to the services they depended on to manage day to day care. It also left many sites without a revenue source to pay employees and maintain buildings. Almost a year later, many states have still not reopened ADS and sites that have reopened have done so with a lower census, increased costs, and the lingering fear of a second closure. Much focus has been on the care of older adults in nursing homes or other residential long-term care settings but the challenges of ADS and the people they serve has been mostly ignored. The purpose of this symposium is to highlight the implications of the COVID-19 pandemic on ADS centers. Holly Dabelko-Schoeny will present data gathered from ADS Centers across Ohio. Lauren Parker, will then present data from ADS sites across the United States that examines the effect of COVID-19 on closures and programming during the closures. Katherine Marx will present the effect of ADS closures on family caregivers of persons living with dementia. Finally, Joseph Gaugler will explore this from a policy perspective and provide recommendations moving forward.

Who’s in the House: Staffing in Long-Term Care Homes During the COVID-19 Pandemic

There is an absence of high-quality workforce data that could be used globally for comparative research on workforce planning in the residential long-term care (LTC) sector. We know that older adults residing in the LTC settings have multimorbidities resulting in complex care needs, yet the workforce is insufficiently able to meet their needs. A further reduction in LTC workforce was noted during the COVID-19 pandemic which increased the risk of adverse outcomes for residents. Survey results focused on the workforce in LTC homes collected from several countries during the current pandemic, highlighted that several members of the workforce were either absent or worked virtually (e.g., physicians, social workers). A better understanding of who is/or should be in the house to meet the needs of residents during or after future pandemics requires a workforce data system that routinely collects this information to ensure best quality outcomes for residents and their carers.

519 - PET@home: Research protocol for a toolkit to improve care for non-residential long term care clients owning pets

BackgroundOver half of the households in The Netherlands have one or more pets. In elderly people, owning a pet is associated with a better quality of life and less loneliness, anxiety, depression and agitation. Many non-residential long term care (LTC) clients rely on support of others to take care of their pets. However, that may place a significant burden on the social support network of the LTC client. Issues relevant to keeping pets are not explicitly incorporated in the Dutch Long-term Care Act. Many LTC organizations have no instruments for care workers, clients and their family (1) to consolidate the positive role of pets for clients’ quality of life and (2) to address whether it is possible to keep the pets and to organize care accordingly.Research ObjectivesTo help care workers, clients and their family to gain insight into the role of the pets in the clients’ life and their social support network; to develop practical instruments that help making decisions about owning and caring for pets.MethodPLAN: In months 0-16, a narrative systematic review will be conducted (STUDY 1.1) on the meaning of pets for elderly people in general. A qualitative STUDY 1.2 with LTC clients, their informal carers and care professionals will validate and further explore the topic. STUDY 1.3 and 1.4 develop and (cognitively) validate work cards for interviews of clients and relatives by care providers. In months 17-29, an Experience based co-design method (STUDIES 2.1-2.3) will be used to develop the PET@home toolkit. The method includes (1) discovery interviews (10 clients and their family), (2) focus groups with healthcare providers (N = 2x6); (3) focus groups with 6-8 clients and informal and professional carers. In STUDY 3.1, potential users will pre-test the Toolkit. In months 30-34, a process evaluation (STUDY 3.2) is performed in 10-15 clients. A dissemination and an implementation plan will be developed.ConclusionsThe project will result in an innovative PET@home toolkit that will help to assess the pets role in the clients’ quality of life and support network, and will help making decisions about owning and caring for pets.

Separate and Unequal: A Time to Reimagine Dementia

The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict “no visitor” and lockdown policies out of concern for their residents’ physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep and pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form “Reimagining Dementia: A Creative Coalition for Justice. ” We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.

Factors Affecting the Implementation, Use, and Adoption of Real-Time Location System Technology for Persons Living With Cognitive Disabilities in Long-term Care Homes: Systematic Review

Background As the aging population continues to grow, the number of adults living with dementia or other cognitive disabilities in residential long-term care homes is expected to increase. Technologies such as real-time locating systems (RTLS) are being investigated for their potential to improve the health and safety of residents and the quality of care and efficiency of long-term care facilities. Objective The aim of this study is to identify factors that affect the implementation, adoption, and use of RTLS for use with persons living with dementia or other cognitive disabilities in long-term care homes. Methods We conducted a systematic review of the peer-reviewed English language literature indexed in MEDLINE, Embase, PsycINFO, and CINAHL from inception up to and including May 5, 2020. Search strategies included keywords and subject headings related to cognitive disability, residential long-term care settings, and RTLS. Study characteristics, methodologies, and data were extracted and analyzed using constant comparative techniques. Results A total of 12 publications were included in the review. Most studies were conducted in the Netherlands (7/12, 58%) and used a descriptive qualitative study design. We identified 3 themes from our analysis of the studies: barriers to implementation, enablers of implementation, and agency and context. Barriers to implementation included lack of motivation for engagement; technology ecosystem and infrastructure challenges; and myths, stories, and shared understanding. Enablers of implementation included understanding local workflows, policies, and technologies; usability and user-centered design; communication with providers; and establishing policies, frameworks, governance, and evaluation. Agency and context were examined from the perspective of residents, family members, care providers, and the long-term care organizations. Conclusions There is a striking lack of evidence to justify the use of RTLS to improve the lives of residents and care providers in long-term care settings. More research related to RTLS use with cognitively impaired residents is required; this research should include longitudinal evaluation of end-to-end implementations that are developed using scientific theory and rigorous analysis of the functionality, efficiency, and effectiveness of these systems. Future research is required on the ethics of monitoring residents using RTLS and its impact on the privacy of residents and health care workers.