Accentuate the positive: the association between informal and formal supports and caregiving gains

Study Aim/Purpose: This study explored whether receipt of formal and informal supports by caregivers for persons living with dementia (PLWD) were associated with caregiver gains, such as perceived benefits of the caring role or other positive influences on the caregiver’s life. The research also assessed whether the positive effects of caregiving differ between women and men. 

Summary of Methods: The study employed a cross-sectional design using secondary data from the National Study of Caregivers (NSOC), which interviewed caregivers for Medicare beneficiaries 65 years of age and older who responded to the National Health and Aging Trends Study. Inclusion criteria resulted in interview responses from a total 705 NSOC caregivers of PLWD. Independent variables were three informal and three formal support resources: informal supports included having friends or family to talk to about important things in life, help with daily activities, and help in care provision, and formal supports were support groups for caregivers, respite services, and a training program that helped the caregiver take care of the recipient. The outcome was caregiver gains, measured with a mean score on a four-item Likert scale affirming whether caregiving: 1) “gives confidence in your abilities”, 2) “helps you deal better with difficult situations”, 3) “helps bring you closer to the care recipient”, and 4) “helps you feel satisfied that your care recipient is well cared for.” 

Summary of Results: The most commonly reported informal support was having friends and family to talk to (86.2%), followed by having friends and family to help with the care recipient (76.5%) and friends and family to help with household activities (55.7%). Receipt of formal supports was much less common with only 21.6 percent having used a respite service in the past year; 8.7 percent having received a care training; and 5.3 percent having attended a support group. The analysis found that both female and male caregivers who provided more ADL assistance and had friends and family to talk to reported more caregiving gains. Those with lower education also had more caregiving gains associated with support than those with higher education. At the same time, none of the formal supports had a significant effect on caregiving gains. However, having attended a caregiver training program was associated with greater caregiving gains for male caregivers but not female caregivers. 

Limitations of Study: The authors note that the small number of caregivers utilizing formal supports may limit the power to detect significant associations between service utilization and caregiver gains and may bias or overestimate the gains for men. Additionally, given that it was a cross-sectional design, the study cannot imply that supports lead to positive outcomes for caregivers. They also recognize that the survey does not include information on when in the past year or for how long caregivers used the support services, the intensity of their informal supports, or the size of their networks. Finally, they note that the measure of caregiving gains was limited to a small number of questions. 

Authors’ Discussion/Conclusions: The authors highlight the findings that support from family and friends can help all caregivers, and for men in particular, skills-based programs may lead to more caregiving gains. They suggest that future research consider how to best target and recruit male caregivers in training programs, for example, through local service clubs or primary care and other practitioners who work with the care dyad. The authors also point out the lack of racial data in the NSOC survey data they analyzed, and recommend that future research consider racial differences in caregiver gains and supports. Finally, in recognition of the small scale of measures available in NSOC to analyze caregiver gains, they recommend that future studies use a more robust measure of caregiver gains.