Care Recipient and Family Caregiver Perceptions of Everyday Care In Early-Stage Dementia: The Effect of Incongruence On Quality of Life and the Mediating Effects of Relationship Strain

Purpose Care recipients' (CRs') perspectives on the caregiving situation and their quality of life (QoL) have been neglected in the research of caregiving. Few studies have examined the differences between CRs with early-stage dementia and family caregivers (CGs) in their perspectives about CRs' daily care, and the effect on CGs' and CRs' QoL. The objectives of this study were to examine the extent to which CGs and CRs have incongruence about CRs': 1) decision-making involvement (DMI), for everyday care, 2) preferences/values (VP) for social relations. In addition, the study examined the effects of incongruence on VP and DMI on both CG and CR QoL. Furthermore, this study examined the mediating effect of CGs' and CRs' relationship strain on the association between incongruence on the decision-making process and QoL of CGs and CRs. Method A convenience sample of 205 dyads of CRs with early-stage dementia and family CGs were interviewed in-person. Each party's QOL was measured by 13-item scale. The 15- item DMI scale assessed CGs' and CRs' thoughts about CRs' decision-making involvement on daily care. The 5-item VP scale assessed CGs' and CRs' thoughts about the CR's social relations. The relationship strain was measured by the 4-item scale. Incongruence between CGs and CRs on DMI and VP was measured by absolute differences and directions of differences. Paired t-tests were conducted to explore the differences in DMI and VP between CGs and CRs. Two-level multilevel modeling with HLM6 was used to test the effects of incongruence on CG and CR QoL, and the mediating effects of relationship strain on the associations between incongruence and QoL after controlling for background variables (CG gender, kin relationship to CR, CG income). Results Mean CG age was 62 years and mean CR age was 76 years. More than half of the sample (60%) was White. About 54% were spouse CGs, 28% daughters caring for mothers. CGs rated CRs' involvement in decision making as significantly lower than CRs did. CGs also reported that CRs valued maintaining social relations significantly less than CRs reported. Multilevel analysis revealed that less incongruence on VP was associated with better QoL. However, this study found no mediating effect of relationship strain on the associations between incongruence and QoL. Conclusions/ Implications Overall, no mediating effect of relationship strain on the association between incongruence and QOL was found. However, it is important to recognize the substantial incongruence about CRs' everyday care between CGs and CRs and the direct effects between incongruence on VP and QoL and between relationship strain and QoL. Information about incongruence on DMI and VP between CGs and CRs is useful for social workers to implement better services for early-dementia CRs and their family CGs. Most of all, practitioners should keep in mind that the care context includes both the CG and the CR. Instead of solely depending on CGs' responses, incorporating CRs' responses may help service providers to understand the caregiving context and to implement appropriate services. Future research should explore the potential moderating effects of relationship strain.