Identifying Care-Related Needs of Family Caregivers of People With Dementia: Beyond the Stress Process Model

Abstract The psychosocial stress process model (Pearlin et al., 1990) remains a dominant theoretical framework characterizing the transactions between factors affecting outcomes of informal caregivers of people with dementia (PWD). Despite widespread agreement that the model provides an important framework for understanding caregiver experiences and predicting caregiver outcomes, it is not sufficient to clarify the needs of caregivers. Needs are conceptualized as the skills and resources that could be used to ameliorate the negative impacts of caregiving and promote quality of life (Gitlin & Hodgson, 2015). Determining caregiver needs requires appreciation of the complex background, contextual, and stress-related variables described in the stress process model and requires empirically- and theoretically-driven understanding of the diverse resources, materials, and skills that individuals require for global health and functioning. In this study, we conducted a content analysis of existing measures of dementia caregiver needs (N = 54), content analysis of materials related to evidence-based dementia caregiver interventions and government reports and documents (N = 28), and semi-structured in-depth interviews with current caregivers of PWD (N = 12) to identify the personal and care-related needs of family caregivers of PWD. We propose a framework of five inter-related need categories (Health-related needs, environmental needs, psychological needs, social needs, and needs related to the care and functioning of the PWD) that transact with the factors described in the stress process model, ultimately influencing functioning. In the future, we plan to test this model empirically with a nationally representative sample of caregivers.

giving responsibilities, and thus take more toll in health and wellbeing when they are employed. The current study examined the gender difference in mental health among employed family caregivers, focusing on the role of workplace support in balancing work and caregiving roles. Guided by the social role theory and the moderated-mediation model of employment adjustment and mental health, we analyzed a nationally representative data from the 2012 Canada General Social Survey -Caregiving and Care Receiving with a sample of 2,426 participants selected. Moderated-mediation analysis based on the SPSS macro PROCESS 3.3 was used. Women employed family caregivers are more likely to undertake higher intensive caregiving, make more employment adjustment, and further report worse mental health status than their men counterparts. Gender difference was apparent in regards to the workplace support. For women, the moderating effect of workplace support is significant only when there are at least 5 different types of workplace support available at their workplaces, while for men, the moderating effect is significant when there are at least 2-3 different types of workplace support available. Women employed family caregivers experience worse mental health when employment adjustment is needed for their care responsibility. Findings have implications for providing workplace support for family caregivers given that women benefit less from workplace support compared to men. Further study is needed to explore the impact of various types of workplace support for women employed family caregivers, and to provide tailored support to them.

OLDER CAREGIVERS' POSITIVE AND NEGATIVE EXPERIENCES WITH CAREGIVING
Latarsha Chisholm, 1 Lynn Unruh, 2 and jacqueline Lamanna, 3 1. University of Central Florida,Orlando,Florida,United States,2. university of central florida,Orlando,Florida,United States,3. UCF,Orlando,Florida,United States U.S. population growth is greatest amongst the oldest-old who are most likely to need temporary or permanent reliance on formal or informal care-giving. With co-survival of older spouses, and greater longevity, informal care-giving is increasingly provided by older adults for other older adults. Little is known about the positive and negative care-giving experiences of older informal caregivers. This observational study examines the relationship between the care-giving situation and the positive and negative perceptions of caregiving in caregivers age 65 and older. A survey of 108 older informal caregivers utilizes well-validated instruments to measure perceptions of two positive (positive self image, positive life) and two negative (stress, uncertainty) experiences due to care-giving. Regressions statistically assess the relationship between care-giving situations and these positive and negative perceptions. We find that while some caregiving situations, such as higher amounts of unpaid support, are related to positive care-giving experiences, others, such as care-giving a recipient with a greater number of ADL deficits, having more care-giving responsibilities, and having increased hours of work due to care-giving, are related to more negative experiences. Some situations, such as lower income and greater involvement in care-giving, are related to both positive and negative perceptions. Higher levels of emotional support were related to mixed positive and less negative perceptions of care-giving. Result indicate that healthcare system and community support is needed to provide opportunities for unpaid support and assistance with caregivers of recipients with a high number of ADL deficits and caregivers who have more care-giving responsibilities.
problems. There is a growing awareness that caregivers are also at risk for physical and mental health problems and therefore also require support to reduce stress and maintain optimal health. Research suggests that engaging in creative and artistic activities may reduce stress and improve physical and mental health among caregivers. Researchers from Bethune-Cookman University partnered with the Atlantic Center for the Arts in New Smyrna Beach, FL to evaluate their Creative Caregiving program. Approximately 10 informal caregivers and their care partners met for 2 hours each week over the course of 6 weeks from February 3-March 9, 2020. Participants learned how to connect mind, body and spirit by using the arts as a tool of self-care, social interaction, and learning. At each session, participants were asked to rate their overall wellbeing on a scale from 1-10. Pre-and post-session data was analyzed using paired samples t-tests. Results indicate that there was significant improvement in wellbeing and participants reported improvements in their stress, mood and relationship with their caregiver or care partner. These findings were observed for both caregivers and care partners, suggesting that arts programs can benefit both. Such programs are a fun and cost-effective way to improve wellbeing, at least in the short-term.

RELATIONSHIP QUALITY WITH ADULT CHILDREN AMONG GRANDPARENT CAREGIVERS Heejung Jang, University of Michigan, Ann Arbor, Michigan, United States
For the increasing number of grandparent caregivers, relationship quality with adult children has important implications for the well-being of grandparents. Based on solidarity, conflict, and ambivalence, the present study examines how parent-adult children's relationships differ by grandparent caregiving status on depressive symptoms and psychological well-being. This study uses The 2014 Health and Retirement Study from a sample of 1,197 grandparent caregivers age 51 and older. Latent class analysis is applied to measure affection and conflict in older grandparents-adult children relationships. Results from the latent class analysis identified four clusters: amicable, ambivalent, detached, and disharmonious. OLS regression models are estimated the association between relationship types and depressive symptoms and psychological well-being by grandparent caregiving. For the depressive symptoms, disharmonious relationships with adult children increase depressive symptoms among co-parenting and custodial grandparents. Also, ambivalent and disharmonious relationships with adult children reduce the psychological well-being of older grandparents. The study discusses the variances of the relationships with adult children and their effects on grandparents' well-being. The results will shed light on the importance of familial relationships and will be beneficial for the development and maintenance of policies and practices that support the families of grandparent caregivers. The purpose of this concept analysis is to address fundamental gaps in the understanding of self-efficacy in family caregivers of older adults with cognitive impairment, including updating the 26-year-old concept analysis with a contemporary definition. With the first of the baby boomers set to turn 75 in 2021, the growing number of Americans with Alzheimer's disease is predicted to more than double over the next 30 years, while the pool of potential family caregivers is likely to diminish by half. Research demonstrates that increased self-efficacy can help family caregivers of older adults with Alzheimer's and other types of cognitive impairment experience lower burden and depressive symptom severity. This study utilized Walker and Avant's method of concept analysis, an eight-step iterative process that helps to clarify the meaning of ambiguous concepts. A literature review was conducted from July 1993 through March 2019 using PubMed/MEDLINE, Scopus, CINAHL, and Embase. Eight defining attributes of this concept were identified. The revised definition of self-efficacy in this population is "a family caregiver's confidence in their ability to: manage behaviors and other caregiving stresses, control upsetting thoughts, acquire medical information, manage medical issues, obtain self-care, access community supports, assist with activities of daily living and other care, and maintain a good relationship with a relative, friend, or neighbor of an older adult with cognitive impairment." Practice implications include tailoring interventions to improve family caregiver self-efficacy. Policy implications include fostering evidence-based health strategies through payment and delivery incentives that further support caregiver self-efficacy.

SERVICE-SPECIFIC SURVEYING TO SUPPORT PERSON-CENTERED HCBS FOR OLDER ADULTS AND THEIR CAREGIVERS Caitlyn Walsh, and Jessica Tice, Florida Department of Elder Affairs, Tallahassee, Florida, United States
The Florida Department of Elder Affairs (DOEA) annually surveys clients receiving state funded home and communitybased services (HCBS) to measure their satisfaction with services. Historically, the same survey instrument was used each year, to afford question-level comparisons across time. However, in 2015 internal contradictions were identified between individual-level satisfaction ratings and qualitative statements made by the respondents later in the survey. The high rates of satisfaction typical in survey responses were also contradicted by findings from a comprehensive program evaluation which revealed high percentages of clients who terminated their services and many caregivers reporting strain and varying types of personal crisis. To address these issues, the annual Client Satisfaction Survey and methodology was redesigned to be more specific regarding details about the delivery of direct services, and the sampling methodology was revised to constrain to the recipients of discreet service types. The results from these new service-level surveys will be presented for each of three direct services: case management, personal care, and homemaker. Findings revealed differences across regions in the state, and highlighted the frustration experienced by HCBS clients with high worker turnover and low training for special conditions, such as Alzheimer's or related dementia. Complaints and suggestions collected from clients and caregivers were shared with program managers for consideration in changes to policies, training, and other