The number of family members caring and caregiving for a loved one undergoing physical and mental changes continues to increase dramatically. For many, this ongoing experience not only involves the “burden of caregiving” but also the “burden of grief” as their loved-one’s newfound medical condition can result in the loss of the person they previously knew. Dramatic cognitive, behavioral, and personality changes, often leave caregivers bereft of the significant relationship they shared with the affected person prior to the illness or (...) injury. This results in what we term conditions of acquired “non-death interpersonal loss”. Current approaches to these losses use an amalgam of models drawn from both death and non-death loss. Despite their utility, these frameworks have not adequately addressed the unique processes occurring in the interpersonal sphere where the grieving caregiver needs to reach some modus vivendi regarding the triad of “who the person was,” “who they are now,” and “who they will yet become.” In this paper we propose a process-based model which addresses cognitive-emotional-behavioral challenges caregivers meet in the face of their new reality. These require a revision of the interpersonal schemas and the relationships that takes into account the ongoing interactions with the affected family member. The model and its utility to identify adaptive and maladaptive responses to NoDIL is elaborated upon with clinical material obtained from caregivers of people diagnosed with major neuro-cognitive disorder and pediatric traumatic brain injury. The article concludes with implications for theory, research and clinical intervention. (shrink)

Background: Due to the aging society the number of informal caregivers is growing. Most informal caregivers are women working as nurses within a health organization and they have a high risk of developing mental and physical exhaustion. Until now little research attention has been paid to the expectations and needs of double duty caregivers and the role of self-management in managing private-work balance.Objective: The overall aim of this study was to investigate the expectations and needs of double duty caregivers in (...) Netherlands, and to examine the meaning of self-management in managing work-life balance.Method: Different research methods have been applied in this exploratory study. Firstly, a scoping review has been conducted on the topics self-management and sustainable employability of double-duty caregivers using the search engines: CINAHL, MEDLINE, PubMed, and Google Scholar. Furthermore, a qualitative study has been conducted through focus groups with double duty caregivers.Results: Twenty studies that met the inclusion criteria could be identified. We found that double duty caregivers have different motivations for being a double duty caregiver based on internal and external expectations. Double duty caregiving causes a lot of mental and physical pressure for the caregiver. To be able to combine both duty’s, double duty caregivers need flexibility and understanding from the workplace. Through two focus groups we found that social support from the workplace is not enough to be able to manage the situation. Self-management skills are important to be able to communicate effectively with the workplace and community care organizations about the kind of support needed. Also, health care organizations should offer the same support to double duty caregivers as any other informal caregiver.Discussion: Double-duty caregivers are at high risk of developing symptoms of overload and risk of reduced self-management quality and employability levels across time. Health care organizations and the double duty caregiver often wait too long to act instead of taking more preventive measures. Furthermore, community care organizations should dialog with double duty caregivers about their wishes concerning the division of caring tasks. This finding calls for special attention, with long-term solutions at both macro, organizational, and employee level. (shrink)