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Caregiver Burden in Prion Disease
Alexsandra Kovacevich, John Thomas Martin, Katie Glisic, Paula K. Ogrocki, Brian Stephen Appleby. Dementia and Geriatric Cognitive Disorders Extra, 2025-11-24
Topic: Risk, prevention and care in population studies
Thirty caregiver-patient dyads were followed longitudinally. Prion disease duration averaged 7.88 months. Mean initial NPI-Q distress score was 15. Qualitatively, distress increased from the time of study enrollment until peaking on average half-way through study participation and then declined. Higher burden (4-item Zarit Burden Interview) was associated with younger age at disease onset. Burden was not predicted by disease type, duration, caregiver demographics, relationship to the patient, MRC Prion Rating Scale scores, NPI-Q, or support group attendance. These findings confirm significant caregiver distress in prion disease and help better describe the course of caregiver burden throughout the disease. Statistical analyses were limited by small sample size and phenotypic heterogeneity, and future research would benefit from larger sample sizes.
Key findings
- Thirty caregiver-patient dyads were followed longitudinally.
- Prion disease duration averaged 7.88 months.
- Mean initial NPI-Q distress score was 15.
- Qualitatively, distress increased from the time of study enrollment until peaking on average half-way through study participation and then declined.
- Higher burden (4-item Zarit Burden Interview) was associated with younger age at disease onset.
Why it matters
This small longitudinal study of 30 caregiver-patient dyads found significant caregiver distress in prion disease, with higher burden linked to younger age at disease onset. The authors note that small sample size and disease heterogeneity limited the analyses, and they call for larger studies.
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Study details
- Evidence strengthLow
How this study scored 32/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Dementia and Geriatric Cognitive Disorders Extra) |
| Journal's citation record | 0 / 4 | Dementia and Geriatric Cognitive Disorders Extra: journal h-index 52 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 1 / 7 | Cited 2 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.7 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 1 / 6 | Cited 0.5× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 0 / 4 | Cited 2 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Brian Stephen Appleby: h-index 43 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | Case Western Reserve University: institution h-index 1,159 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 2 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 41510146) |
| Free to read | 2 / 2 | Free to read |
| Total | 32 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1159/000549584
- PubMed: 41510146
- Original source →
- Free full text: Dementia and Geriatric Cognitive Disorders Extra →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
APA 7th
Kovacevich, A., Martin, J. T., Glisic, K., Ogrocki, P. K., & Appleby, B. S. (2025). Caregiver Burden in Prion Disease. Dementia and Geriatric Cognitive Disorders Extra. https://doi.org/10.1159/000549584
Vancouver
Kovacevich A, Martin JT, Glisic K, Ogrocki PK, Appleby BS. Caregiver Burden in Prion Disease. Dementia and Geriatric Cognitive Disorders Extra. 2025. doi:10.1159/000549584. PMID: 41510146.
BibTeX
@article{kovacevich2025-41510146,
author = {Kovacevich, Alexsandra and Martin, John Thomas and Glisic, Katie and Ogrocki, Paula K. and Appleby, Brian Stephen},
title = {{Caregiver Burden in Prion Disease}},
journal = {Dementia and Geriatric Cognitive Disorders Extra},
year = {2025},
doi = {10.1159/000549584},
pmid = {41510146},
url = {https://doi.org/10.1159/000549584}
}
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