UC Davis

Introduction: Dementia formal caregiving resources can minimize family caregiver stress and burden (Bass et al., 2013; Cox, 1997; Luchsinger et al., 2018). However, even when available, only 25% of dementia caregivers report using them (Wolff et al., 2016). Additionally, research shows that among family caregivers, those with the lowest utilization are spouses (Cox, 1997; Robinson et al., 2013; Winslow, 1997) and women (Friedemann & Buckwalter, 2014; Sutcliffe et al., 2017). There are internal and external factors to consider that influence the caregivers’ willingness or reluctance to use formal resources. Research is limited, however, regarding the influencing decision factors to use formal resources in caring for a PWD, including gender and kinship. The purpose of this qualitative descriptive study was to explore female spousal caregivers’ (FSCG) decisions about the use of formal caregiving resources in caring for a partner with dementia. The study aims are: 1. To explore FSCG’s willingness and/or reluctance to use formal caregiving resources. 2. To describe the factors influencing FSCGs’ decision to use formal caregivingMethods: A qualitative descriptive study was done using a 1:1 semi-structured interview via the ZOOM meeting application. Purposive sampling was used to recruit FSCG through the UC Davis Healthy Aging Clinic, Family Caregiver Institute, local agencies serving older adults, and the UC Davis StudyPages. Participants (n=11) included FSCG of a male with dementia, living with them in a home setting and assisting with at least one instrumental activity of daily living. FSCGs were excluded if they were less than 65 years old or did not speak English. Thematic analysis was used to identify commonly shared themes within and across interviews (DeSantis & Ugarriza, 2000). Results: Findings suggest that factors contributing to the willingness or reluctance to use a resource are specific to the spousal caregiver, the person with dementia, or the resource qualities. Caregivers and the PWD shared factors that contributed to their willingness and reluctance to use resources, specifically their physical abilities and their views of the need for the resource. There were several differences in the factors FSCGs identified as influencing their willingness versus reluctance to use a resource. Willingness, for example, was influenced by recommendations from trusted friends or healthcare providers, whereas this was not mentioned in discussions of reluctance. In contrast, concern for the dignity and respect of their husbands with dementia was mentioned in discussions of reluctance but not willingness. Caregivers decided to use resources only after carefully considering their husband’s needs, understanding what they needed, how well the resource would fit them, and whether they would accept that help. Interestingly, cost and access were less germane to the caregiver’s decision. Although data regarding socioeconomic status were not collected as part of the study, which could have impacted the results reported by FSCG. Conclusion: Factors impacting the willingness and reluctance of FSCG to use caregiving resources are dynamic and vary between caregivers and individuals as their needs and readiness change in response to their experience of their husband’s illness trajectory. This finding underscores the importance of healthcare providers engaging in ongoing conversations and assessments throughout the caregiving journey to assess the caregiver’s willingness and reluctance to start a specific service as it relates to the readiness of the FSCG and the PWD and the specific qualities of the resource itself. To further understand the decision-making process of FSCG of PWD for the use of formal caregiving support, more studies are needed in diverse groups of caregivers by experience, culture, race/ethnicity, education, language, and socio-economic status. Future research is also recommended among caregivers having other types of kinship (i.e., husband, daughter, son, sibling) to the PWD.