How both positive and burdensome caregiver experiences are associated with care recipient cognitive performance: Evidence from the National Health and Aging Trends Study and National Study of Caregiving

Abstract

IntroductionBeing an informal caregiver to a person with chronic disease, including persons living with dementia (PLWD), is a big role to take on and many caregivers experience both substantial burden and emotional reward related to caregiving. Care recipient factors (e.g., behavioral symptoms) are associated with caregiver experience. However, the relationship between caregiver and care recipient is bidirectional, so it is likely that caregiver factors impact the care recipient, though few studies have investigated this.MethodsIn the 2017 round of the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC), we studied 1,210 care dyads-−170 PLWD dyads and 1,040 without dementia dyads. Care recipients completed immediate and delayed word list memory tasks, the Clock Drawing Test, and a self-rated memory rating, while caregivers were interviewed about their caregiving experiences using a 34-item questionnaire. Using principal component analysis, we created a caregiver experience score with three components—Practical Care Burden, Positive Care Experiences, and Emotional Care Burden. We then investigated the cross-sectional association between caregiver experience components and care recipient cognitive test performance using linear regression models adjusted for age, sex, education, race, and depressive and anxiety symptoms.ResultsAmong PLWD dyads, a higher caregiver Positive Care Experiences score was associated with better care recipient performance on the delayed word recall (B = 0.20, 95% CI 0.05, 0.36) and Clock Draw (B = 0.12, 95% CI 0.01, 0.24) tests while higher Emotional Care Burden score was associated with worse self-rated memory score (B = −0.19, 95% CI −0.39, −0.003). Among participants without dementia, higher Practical Care Burden score was associated with poorer care recipient performance on the immediate (B = −0.07, 95% CI −0.12, −0.01) and delayed (B = −0.10, 95% CI −0.16, −0.05) word recall tests.DiscussionThese findings support the concept that caregiving is bidirectional within the dyad and that positive variables can positively impact both members of the dyad. This suggests that caregiving interventions should target the caregiver and recipient both individually and as a unit, with the goal of holistically improving outcomes for both.

Impact of care–recipient relationship type on quality of life in caregivers of older adults with dementia over time

“…This finding is consistent with our previous cross-sectional study [ 33 ]. Existing literature has consistently reported that many factors, such as caregivers’ race, age and care recipients’ cognitive functions impact the dementia caregiving experience [ 64 , 65 ]. Considering the notable differences in race, age and education level between spousal and adult–child caregivers, along with the variations in dementia status of care recipients in these two groups, our findings show that the impact of relationship type on caregivers’ QoL trajectories can be influenced by caregivers’ socio-demographics and care recipients’ dementia status.…”

2024 Alzheimer's disease facts and figures

“…445 In the 2011 National Study of Caregiving, greater satisfaction from dementia caregiving was associated with more emotional support from family members and friends. 514 Although caregivers report positive feelings about caregiving, such as family togetherness and the satisfaction of helping others, A10 , 515 , 516 , 517 , 518 , 519 , 520 , 521 , 522 , 523 they also frequently report higher levels of burden and stress; depression or other adverse mental health outcomes; strain; and problems with navigating care transitions when compared with other caregivers or non‐caregivers.…”

Predictors of care burden among caregivers of patients with COVID‐19

“…Caregivers often do not have the necessary preparation to take care of patients during the acute phase of COVID‐19, and care poses a serious challenge for them (Ebrahimi et al, 2022 ). However, the burden of caregiving also encompasses positive aspects, such as imbuing caregivers' lives with a sense of meaning, experiencing the joy of being able to provide care and enhancing their personal satisfaction (Hilgeman et al, 2007 ; Wennberg et al, 2023 ). Research indicates that caregivers in Iran who tend to COVID‐19 patients experience significant caregiving burdens due to various factors (Jouybari et al, 2022 ; Mirzaei et al, 2020 ; Shafiezadeh et al, 2019 ; Sheikhbardsiri et al, 2022 ).…”

“…serious challenge for them (Ebrahimi et al, 2022). However, the burden of caregiving also encompasses positive aspects, such as imbuing caregivers' lives with a sense of meaning, experiencing the joy of being able to provide care and enhancing their personal satisfaction (Hilgeman et al, 2007;Wennberg et al, 2023).…”