What question did this study set out to answer?

To explore the relationship between caregiver burden and resilience in affecting stress among informal caregivers of people living with dementia.

July 16, 2026Open Access

Informal caregivers of people living with dementia as invisible second patients: examining the dual role of burden and resilience in perceived stress

EÖEmre ÖzbulutUniversity Medical Center Freiburg AWAlexandra WuttkeUniversity of Konstanz KGKatharina GeschkeJohannes Gutenberg University Mainz

Key Points

To explore the relationship between caregiver burden and resilience in affecting stress among informal caregivers of people living with dementia.
Sample of 172 informal caregivers of people living with dementia
Hierarchical multivariate regression analysis conducted to assess associations between perceived stress, caregiver burden, resilience, and quality of life
Interaction model calculated to investigate resilience as a moderating factor.
In Block 1, personal constraints (p < 0.001) and quality of life of the PwD (p < 0.001) were significantly associated with stress.
In Block 2, personal constraints (p < 0.001) and QoL of the PwD (p = 0.001) remained significant; explained variance increased significantly (p < 0.001).
In the interaction model, main effects of resilience (p = 0.004), personal constraints (p = 0.002), and QoL of the PwD (p = 0.002) were significant.

Abstract

Abstract Background Informal caregivers (ICs) of people living with dementia (PwD) are often referred to as invisible second patients, as they frequently experience chronic stress and related health issues. Identifying factors that contribute to or buffer caregiver stress is therefore of critical importance. This study aimed to explore how caregiver burden and resilience jointly are associated with stress among ICs of PwD – a rarely adopted approach. Methods The sample consists of n = 172 ICs. To examine the associations between our dependent variable, stress (PSS), and caregiver burden (BIZA-D-PV), caregiver resilience (BRS), the quality of life of the PwD (QoL-AD), as well as the IC’s sociodemographic characteristics, we conducted a hierarchical multivariate regression analysis. Resilience was included as a second block to assess changes in model fit and variable effects. Furthermore, an interaction model was calculated to investigate potential moderating effect of resilience. Results In Block 1, without considering resilience, personal constraints of the IC (p < 0. 001), the QoL of the PwD (p < 0. 001), and cohabitation of the IC and PwD (p = 0. 006) were significantly associated with stress. In Block 2, only personal constraints (p < 0. 001) and the QoL of the PwD (p = 0. 001) remained significant, and, additionally, the explained variance (R²) increased significantly (p < 0. 001). In the interaction model, only the main effects of resilience (p = 0. 004), personal constraints (p = 0. 002), and QoL of the PwD (p = 0. 002) were significant. Conclusions These findings might highlight important considerations for future interventions aimed at supporting ICs and PwD. Special attention could be given to cohabiting IC-PwD dyads, as these relationships often involve unique challenges and stressors that could be mitigated through tailored support strategies. Trial registration German Register of Clinical Trials (Deutsches Register Klinischer Studien, DRKS), DRKS00023560. Registered 13 November 2020 Retrospectively registered, https//www. drks. de/drksweb/navigate. do? navigationId=trial. HTML&TRIALID=DRKS00023560.

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