Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease. Issue 1 (31st December 2022)

• Record Type: Journal Article
• Authors: Harrison, Krista L.; Garrett, Sarah B.; Gilissen, Joni; Terranova, Michael J.; Bernstein Sideman, Alissa; Ritchie, Christine S.; Geschwind, Michael D.
• Is Part Of: Prion. Volume 16:Issue 1(2022)
• Page Start: 23
• Page End: 39
• Publication Date: 2022-12-31
• Subjects: Sporadic Creutzfeldt-Jakob -- palliative -- qualitative -- mixed methods -- caregiver; Protein folding -- Periodicals; Prions -- Periodicals; Proteins -- Biotechnology -- Periodicals; 572.633
• DOI: 10.1080/19336896.2022.2043077
• Languages: English
• ISSNs: 1933-6896

Abstract

ABSTRACT: We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60–86) years and disease duration of 14.5 months (range 4–41 months). Caregivers were interviewed a median of 22 (range 11–39) months after patient death and had a median age of 59 (range 45–73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.