Family caregiving in Creutzfeldt–Jakob disease: An Indian perspective on psychoeducation and palliative care interventions

Creutzfeldt–Jakob disease (CJD) is an uncommon, lethal neurodegenerative prion condition marked by fast deterioration and absence of a curative therapy. Families of individuals with CJD frequently experience significant psychological distress and anticipatory grief. Psychoeducation and palliative care are crucial for assisting families in comprehending the illness trajectory, planning for end-of-life, and navigating bereavement. This case study investigates the role of structured psychoeducational and palliative care interventions in improving coping mechanisms, caregiving readiness, and acceptance among the family members of a woman diagnosed with CJD. After obtaining informed consent, five structured sessions were held with five family members of the patient. Interventions were informed by recognized psychoeducational frameworks and focused on psychoeducation, symptom management, caregiving techniques, anticipatory mourning, and psychosocial spiritual readiness. Sessions were conducted during both postmortem and postmortem phases, facilitating longitudinal observation of familial reactions. Initially, family members exhibited shock, helplessness, and denial of the prognosis. The notion of “end-of-life care” surfaced as a significant motif, facilitating family involvement in the patient’s concluding phases while concurrently allowing for emotional preparation for bereavement. Psychoeducational interventions enhanced decision-making confidence and promoted collective coping within the family. The amalgamation of psychoeducation with palliative and end-of-life care enhanced the caregiving experience, eased the acceptance of death, and diminished the severity of mourning. The findings highlight the necessity of culturally attuned, organized psychological assistance to empower families, bolster resilience, and increase caregiving outcomes in terminal conditions like CJD.