Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

required to address the gap between what FCGs report they need and preparation of healthcare providers to meet those needs. This competency-based education will prepare healthcare providers to effectively identify, engage, assess, and support FCGs, and address the inconsistent system of supports for FCGs. We co-designed our Caregiver Centered Care Education using effective practices for dementia education for health workforce and co-design. We engaged over 60 multi-level, interdisciplinary stakeholders with expertise in health workforce education, frontline healthcare, dementia care, health policy, and family caregiving. We ensured that we included FCGs of people living with dementia. The teaching/learning resources include competency-aligned educational modules, multimedia resources, and facilitators guide. As the hallmark of effective education is content relevant to learners' needs and contexts, our education is designed flexibly, to be tailored to settings and learners. We are pilot testing the Caregiver-Centered Care Education, for acceptability and effectiveness, in five contexts: primary care, acute care, homecare, supportive living, and long-term care. Our education will support Caregiver-Centered Care in all settings providing dementia-related care. Health workforce support will be essential to maintain FCG wellbeing and sustain family caregiving.

RECOGNITION OF ELDER ABUSE BY CHINESE NURSING UNDERGRADUATES: EVALUATION BY THE CAREGIVING SCENARIO QUESTIONNAIRE
Zhuzhu Wang, 1 Jiayuan Zhuang, 1 Qiaoxian Zhang, 2 Xiaolan Lai, 1 Qixi Liu, 3 Baoyuan Xie, 4 and Qinmei Tang, 5 1. Fujian Medical University,Fuzhou,Fujian,China,2. The First Affiliated Hospital of Fujian Medical University,Fuzhou,Fujian,China,3. Ningde Mindong Hospital,Fu'an City,Fujian,China,4. The Second Affiliated Hospital of Fujian Medical University,Fuzhou,Fujian,China,5. Xiamen University affiliated second Hospital of Fuzhou,Fuzhou,Fujian,China This study aimed to evaluate the recognition of elder abuse (EA) among nursing undergraduates in China and determine whether recognition is related to sociodemographic factors and education. We conducted a cross-sectional study with stratified random sampling, using the Caregiving Scenario Questionnaire of Chinese version (CSQ-CV). Questionnaires were disseminated to 343 nursing undergraduates ranged from 1st to 4th year at Fujian Medical University, China. The content validity of CSQ-CV is 0.97. 340 students (99.1%) effectively responded. 223(65.6%) of them identified trapping someone in an armchair; 108(31.8%) locking someone alone; and 3(0.9%) accepting someone was not clean as abusive. The majority correctly identified four out of five nonabusive (NA) items, while 210(61.8%) incorrectly identified camouflaging the door to prevent wondering outdoors. With respect to potential-abusive (PA) items, less than half of the students made right judgements. Only 30(8.8%) correctly identified not taking her to family gatherings; 46(13.5%) telling her only having breakfast after bathing; and 50(14.7%) hiding tablets in someone's cereal or tea. Mann-Whitney and Kruskal-Wallis tests indicated no significance related to correct recognition of the three abusive items with sociodemographic factors and education. The students who were female, caring older adults at home or had detected EA cases were more likely to correctly recognize NA items (Z=-2.428,P=0.015;Z=-2.028,P=0.043;Z=-2.534,P=0.011). Besides, female students got higher scores of CSQ-CV (Z=-2.000, P=0.045). Nursing undergraduates' recognition of EA, especially in neglect and PA are still at a low level in China. Education about EA in nursing undergraduates' curriculum and training program should be encouraged.

SUPPORTING CAREGIVERS OF OLDER ADULTS THROUGH EDUCATION IN MINDFUL GRATITUDE PRACTICE Sungsim Lee, Loyola University Chicago, Chicago, Illinois, United States
This presentation describes a supportive mindfulness practice for caregivers of older adults based on the principles of Won Buddhism (an integrative, a modernized Buddhism). As the aging population grows, there is a significant increase in recognition of the negative impact of caregiver stress on older adults' quality of life. The ability for caregivers to deal compassionately with stress is essential, as caring for older adults can awaken feelings about one's own vulnerability and mortality. The 'Mindful Gratitude Practice' offers a way to cope with stress, cultivate self-care, and improve the care of others. Relevant research will be summarized, which shows mindfulness and gratitude practice respectively benefit positive influence in both physical and emotional well-being. Mindful Gratitude Practice as a spiritual approach that fosters caregivers' emotional stability, reduces their stress and improves the relationship between older adults and their caregivers. In this presentation, three processes of Mindful Gratitude Practice will be described: 1. Understanding a mindfulness practice by establishing intention, attention, and attitude, 2. Learning the principles of a gratitude practice and implementation, and 3. Incorporating mindfulness into a gratitude practice. Research results have demonstrated that through this learning process, caregivers have acquired the concept of interconnectedness, experience grateful moments, and a deep feeling of appreciation in their caregiving relationships. The presenter will guide participants in a short experience of Mindfulness Gratitude Practice. Further readings and resources will be provided for those who are interested. Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners' involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners' own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners' awareness (or lack thereof) of residents' impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as "negotiating risks." Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

DEVELOPMENT AND EVALUATION OF THE CARING AHEAD: PREPARING FOR END OF LIFE IN A DEMENTIA QUESTIONNAIRE
Pamela Durepos, 1 Sharon Kaasalainen, 1 Jenny Ploeg, 1 Tamara Sussman, 2 and Noori Akhtar-Danesh, 1 1. McMaster University,Hamilton,Ontario,Canada,2. McGill University,Montreal,Ontario,Canada A palliative approach is recommended in long-term care to support persons with dementia and help families prepare for end-of-life. Despite this, 50% of family caregivers of persons with dementia report feeling unprepared for death. A questionnaire is needed to assess caregiver death preparedness as an outcome measure for strategies within palliative care. A mixed methods design with qualitative and quantitative phases was used to develop and evaluate the 'Caring Ahead: Preparing for End-of-Life in Dementia' questionnaire. The questionnaire has 30 items organized into Medical, Relationship/Personal, Spiritual and Practical subscales with a 7-pt Likert response scale. To date, the questionnaire has been tested with 117 participants who are 61 years old on average, female (86%), adult children (77%) caring for a person with dementia in long-term care. The mean item score is 5.61 (SD 0.71). Participants report limitations in preparedness related to: 1) communication with healthcare providers about traditions and preferences for end-of-life care; 2) knowledge of the dying process and; 3) life purpose after death. A test-retest with 32 participants demonstrates a high degree of reliability; Intraclass Correlation Coefficient 0.91 (CI95%: 0.31-0.97). A moderate positive correlation between participant total scores and a single global preparedness item suggests concurrent validity, r=.66 (CI95%: 0.51-0.80). These findings will be used to refine the questionnaire and contribute a valuable measurement tool for clinicians, researchers and policy-makers working in palliative care.

LAST PLACE OF CARE AND END-OF-LIFE QUALITY OF LIFE IN THE UNITED STATES: EVIDENCE FROM A NATIONAL REPRESENTATIVE DATA SET
Yifan Lou, 1 Nan Jiang, 2 and Katherine Ornstein, 3 1. Columbia University,New York,New York,United States,2. National University of Singapore,Singapore,New York,Singapore,3. Icahn School of Medicine at Mount Sinai,New York,New York,United States Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults' end-oflife QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients' QoL. Opioids are an important tool for managing Medicare Hospice beneficiaries' pain and symptoms. Little is known about the prevalence of opioid dependence among patients discharged alive from hospice. Using 100% Medicare hospice, acute inpatient, and Part B claims from Federal Fiscal Years (FY) 2017-2018, we identified hospice beneficiaries that were discharged alive during FY2017-2018 and associated with diagnosis codes in subsequent health care incidents indicating opioid dependence. We used a crosswalk from the Agency for Healthcare Research and Quality to determine which codes represented opioid dependence. We characterized beneficiaries and their hospice providers using information from the Medicare Enrollment Database and Provider of Services file. There were 468,204 live hospice discharges during FY2017-2018, among which 9,282 (2.0%) were