Grief in Caregivers of Patients with Mental Illness

A recent study found that 54.3% of informal caregivers of patients receiving psychiatric hospital treatment reported a high level of burden. Elevated burden has been particularly associated with being a parent of both inpatients and outpatients, as well as with certain outpatient diagnoses, notably affective and eating disorders [1]. Thematic analysis identified four overarching domains of caregiver burden: emotional strain, relational challenges, impact on everyday life, and experiences with the healthcare system. Within the emotional domain, caregivers describe profound grief and a pervasive sense of loss, often rooted in the perception that the patient is no longer the same person following the onset of illness [1]. These experiences of grief among caregivers reflect broader psychological patterns, as grief is often conceptualized as a natural psychological and physical response following the loss of a loved one or during palliative trajectories. But it is also a well-documented reaction among informal caregivers of patients with mental disorders such as schizophrenia, anorexia, and dementia, for whom the patient remains alive. Decades of research indicate that grief among informal caregivers of individuals with mental illness constitutes a great psychological burden, adversely affects caregivers’ well-being, and not least interferes with their capacity to support their loved ones [2-6]; yet, it is often insufficiently recognized and socially supported – a phenomenon known as disenfranchised grief, since the loved one is alive but different [6]. This lack of acknowledgment may lead caregivers and often parents of children with mental illness to conceal their grief, experience social isolation, and be deprived of opportunities to access potential counseling [4,6,7]. Research by Rachamim et al. in 2022 showed that high rates of complicated grief (39.7%) have been observed among parents, siblings, adult children, and spouses of individuals with schizophrenia, schizoaffective disorder, and bipolar disorder, with this grief associated with a higher prevalence of posttraumatic symptoms, depression, and poorer physical health [6]. Kalhovde and Kitzmüller in 2024 suggested that caregivers’ experiences of self-conscious emotions, including shame, guilt, and self-blame, can be understood as forms of complicated grief closely linked to posttraumatic stress and depression, arguing that when a loss is ambiguous, it may halt the grieving process and impede coping and decision-making [7]. A 2023 study showed that greater symptom severity in adolescents with anorexia nervosa is associated with increased parental grief, with fathers’ grief linked to anxiety and depression and mothers’ grief to alexithymia and depression; accordingly, paternal burden reflected fathers’ anxiety and grief, while maternal burden was associated with mothers’ grief and symptom severity [8]. A 2024 study on chronic sorrow, a normal grief response to ongoing loss, showed that family caregivers of individuals with severe mental illness experience three types of loss – loss of the person, the former relationship, and a normal life – triggered by seven key events: (a) symptom confrontation, (b) comparisons with developmental and social norms, (c) role changes, (d) deterioration, (e) hospitalization, (f) disregard by health professionals, and (g) worries and memories [9]. According to researchers, grief and chronic sorrow have been studied across different populations, including those supporting people with dementia, where caregivers often continue their role even after placing family members in long-term care, experiencing heightened levels of chronic grief, with studies also showing that higher grief levels intensify the impact of burden on caregiver depression [3,8,9]. Taken together, the studies reflect that caregivers of individuals with mental illness often experience multifaceted grief and unresolved grief, associated with mourning personality changes, lost futures, uncertainty about care, and disrupted family routines [6,8]. Although their loved ones remain alive, profound changes create shattered expectations and lost opportunities for a “normal” life [6]. The illness’ unpredictable course places caregivers in an ongoing ambivalent emotional state between hope for improvement, such as recovery, and grief over relapses or readmission, often hindering resolution [6]. Carers’ grief has been linked to perceived deterioration in the functioning of their loved ones with mental disorders such as psychosis – particularly loss of independent living skills and diminished societal participation – and may also affect parents of adolescents with anorexia nervosa, who can experience profound losses and grief that hinder their ability to support their child and fully engage in life [5,8]. When caregivers lack sufficient social or professional support, their grief can disrupt emotional processing, daily functioning, and relationships, while reducing help-seeking [4,6]. Mental health professionals, therefore, play a key rôle in providing spaces to reflect on and express feelings and dilemmas about the pain of grief and the associated risk of other psychological distress symptoms and negative emotions [6]. Clinical practice and research should therefore prioritize understanding and validating caregiver grief and developing timely, tailored interventions, recognizing that grief and grief-related symptoms can be profound even without a literal loss [4,9]. Currently, no diagnostic manuals, tailored interventions, evidence-based therapeutic programs, or evidence-based practices specifically address grief – including disenfranchised grief – among informal caregivers of individuals with mental illness, particularly those living in the same household or belonging to target groups such as parents, partners, siblings, or children of parents with mental illness [10], leaving caregivers without the opportunity to receive adequate support [6,8]. Nevertheless, grief therapy models, psychoeducational approaches, and interventions that foster a continuing bond with the loved one, support emotional processing, help adapt expectations, and strengthen communication and connection have been proposed as promising strategies for addressing psychological loss and associated grief [6,8]. The high levels of subjective burden associated with profound grief among informal caregivers underscore the urgent need for targeted interventions, highlighting the importance of clinical support to improve caregiver well-being and, ultimately, patient outcomes. Author’s Contributions Original draft preparation, Review & editing, J.P.E. The author has read and agreed to the final version of the manuscript. Data Sharing Statement Data sharing is not available because datasets were not generated and/or tested in writing this letter-to-the editor. Financial Support and Sponsorship The author reports no financial support in writing this letter. Conflicts of Interest The author declares no conflicts of interest.