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Caregiver Burden in Prion Disease.

Alexsandra Kovacevich1,2, John Thomas Martin2,3, Kathleen Glisic4

  • 1Department of Neurology, University Hospital's Neurological Institute, Cleveland, OH, USA.

Dementia and Geriatric Cognitive Disorders Extra
|January 9, 2026
PubMed
Summary

Caregiver burden in prion disease significantly impacts well-being, peaking mid-disease. Younger age at onset correlated with higher burden, but other factors did not predict severity in this study.

Keywords:
Caregiver burdenCaregiversCreutzfeldt-JakobPrion disease

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Area of Science:

  • Neurology
  • Gerontology
  • Psychology

Background:

  • Caregiver burden is a critical factor in dementia care.
  • Prion diseases, like behavioral variant frontotemporal dementia, are associated with high caregiver burden.
  • Prospective research on caregiver burden in prion disease is limited.

Purpose of the Study:

  • To describe caregiver well-being and burden in prion disease.
  • To identify predictors of increased caregiver burden, including demographics, support, and disease characteristics.

Main Methods:

  • Longitudinal assessment of 30 prion disease patients and their caregivers.
  • Utilized instruments such as the Neuropsychiatric Inventory Questionnaire (NPI-Q) and Zarit Burden Interview.
  • Employed descriptive and inferential statistics to analyze caregiver burden progression and predictors.

Main Results:

  • Caregiver distress increased over time, peaking mid-study, then declined.
  • Higher caregiver burden was associated with younger age at prion disease onset.
  • Disease type, duration, caregiver demographics, and support group attendance did not predict burden severity.

Conclusions:

  • Confirms significant caregiver distress in prion disease and characterizes its course.
  • Highlights the need for support throughout the disease trajectory.
  • Small sample size and heterogeneity limit generalizability; larger studies are recommended.