“Mad or Bad?”: Burden on Caregivers of Patients With Personality Disorders

Abstract

The burden on caregivers of patients with personality disorders is often greatly underestimated or completely disregarded. Possibilities for caregiver support have rarely been assessed. Thirty interviews were conducted with caregivers of such patients to assess illness-related burden. Responses were analyzed with a mixed method of qualitative and quantitative analysis in a sequential design. Patient and caregiver data, including sociodemographic and disease-related variables, were evaluated with regression analysis and regression trees. Caregiver statements (n = 404) were summarized into 44 global statements. The most frequent global statements were worries about the burden on other family members (70.0%), poor cooperation with clinical centers and other institutions (60.0%), financial burden (56.7%), worry about the patient's future (53.3%), and dissatisfaction with the patient's treatment and rehabilitation (53.3%). Linear regression and regression tree analysis identified predictors for more burdened caregivers. Caregivers of patients with personality disorders experience a variety of burdens, some disorder specific. Yet these caregivers often receive little attention or support.

Design of an international multicentre RCT on group schema therapy for borderline personality disorder

“…Families and friends may face the challenging task of providing informal care [8,9], whereas society bears the costs of a more intensive use of health services [6,10-13], productivity losses [10,13], and other inter-sectorial costs [14]. In clinical settings, BPD patients are regarded as notoriously difficult to treat, leading many therapists to refrain from treating them.…”

Family Connections versus optimised treatment-as-usual for family members of individuals with borderline personality disorder: non-randomised controlled study

“…However, carers of individuals with BPD sometimes experience challenges and discrimination when attempting to engage with health services, are not satisfied with their involvement regarding patient discharge and support, and in general, do not feel valued, included or educated in treatment pathways [9–11]. The outlined evidence highlights the requirement of support and education, as well as relief of psychological distress for caregivers and significant others of individuals with BPD.…”

Supporting a Person With Personality Disorder: A Study of Carer Burden and Well-Being

“…A qualitative study with 10 parents and one adult child of a person with BPD resulted in themes of a life tiptoeing around the consumer, constant duty and worry, strained family relationships, shame and stigma, powerlessness, guilt and grief, and impaired trust toward the mental health system (Ekdahl, Idvall, Samuelsson, & Perseius, 2011). Further, a recent qualitative study of 30 carers of a person with personality disorder identified 44 themes, highlighting the multidimensionality of burden experienced by carers (Bauer, Döring, Schmidt, & Spießl, 2012).…”