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Self- versus caregiver-reported apathy across neurological disorders
Sijia Zhao, Anna Scholcz, Matthew A Rouse, Verena Svenja Klar, Akke Ganse‐Dumrath, Sofia Toniolo, M. John Broulidakis, Matthew A. Lambon Ralph et al.. Brain Communications, 2025-01-01
Topic: Risk, prevention and care in population studies
Apathy is a prevalent and persistent neuropsychiatric syndrome across many neurological disorders, significantly impacting both patients and caregivers. We systematically quantified discrepancies between self- and caregiver-reported apathy in 335 patients with a variety of diagnoses, such as frontotemporal dementia (behavioural variant and semantic dementia subtypes), Parkinson's disease, Parkinson's disease dementia, dementia with Lewy bodies, Alzheimer's disease dementia, mild cognitive impairment, small vessel cerebrovascular disease, subjective cognitive decline and autoimmune encephalitis. Using the Apathy Motivation Index (AMI) and its analogous caregiver version (AMI-CG), we found that caregiver-reported apathy consistently exceeded self-reported levels across all conditions. Moreover, self-reported apathy accounted for only 14.1% of the variance in caregiver ratings. This apathy reporting discrepancy was most pronounced in conditions associated with impaired insight, such as behavioural variant frontotemporal dementia, and was significantly correlated with cognitive impairment. Deficits in memory and fluency explained an additional 11.2% of the variance in caregiver-reported apathy. Specifically, executive function deficits (e.g. indexed by fluency) and memory impairments may contribute to behavioural inertia or recall of it. These findings highlight the need to integrate patient and caregiver perspectives in apathy assessments, especially for conditions with prominent cognitive impairment. To improve diagnostic accuracy and deepen our understanding of apathy across neurological disorders, we highlight the need for adapted apathy assessment strategies that account for cognitive impairment particularly in individuals with insight or memory deficits. Understanding the cognitive mechanisms underpinning discordant apathy reporting in dementia might help inform targeted clinical interventions and reduce caregiver burden.
Key findings
- Apathy is a prevalent and persistent neuropsychiatric syndrome across many neurological disorders, significantly impacting both patients and caregivers.
- Using the Apathy Motivation Index (AMI) and its analogous caregiver version (AMI-CG), we found that caregiver-reported apathy consistently exceeded self-reported levels across all conditions.
- This apathy reporting discrepancy was most pronounced in conditions associated with impaired insight, such as behavioural variant frontotemporal dementia, and was significantly correlated with cognitive impairment.
- These findings highlight the need to integrate patient and caregiver perspectives in apathy assessments, especially for conditions with prominent cognitive impairment.
Why it matters
This study found that caregiver-reported apathy consistently exceeded self-reported apathy across neurological disorders, with the discrepancy most pronounced in conditions associated with impaired insight. It concerns assessment of apathy and does not test any treatment, cure, or prevention for Alzheimer's disease.
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Study details
- Participants335
- Effect size14.1%; 11.2%
- Evidence strengthLow
How this study scored 51/100
Published in a leading specialty journal. Scored zero for study design and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 9 / 10 | Tier 2 — leading specialty journal (Brain Communications) |
| Journal's citation record | 0 / 4 | Brain Communications: journal h-index 67 (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 | 2 / 4 | 335 participants |
| Effect reported | 2 / 3 | Effect reported as a number, without an interval or test |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 2 / 7 | Cited 10 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 3.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 3 / 6 | Cited 6.3× 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 | 1 / 4 | Cited 10 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 4 / 4 | Last-listed author Masud Husain: h-index 100 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of Oxford: institution h-index 2,205 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 8 institution(s) in 2 countries |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 40568416) |
| Free to read | 2 / 2 | Free to read |
| Total | 51 / 100 | — |
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Read the original
- DOI: 10.1093/braincomms/fcaf235
- PubMed: 40568416
- Original source →
- Free full text: Brain Communications →
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. The record's author list ends in “et al.”, so not every author is named. Check the citation against the original before you use it.
APA 7th
Zhao, S., Scholcz, A., Rouse, M. A., Klar, V. S., Ganse‐Dumrath, A., Toniolo, S., et al. (2025). Self- versus caregiver-reported apathy across neurological disorders. Brain Communications. https://doi.org/10.1093/braincomms/fcaf235
Vancouver
Zhao S, Scholcz A, Rouse MA, Klar VS, Ganse‐Dumrath A, Toniolo S, et al. Self- versus caregiver-reported apathy across neurological disorders. Brain Communications. 2025. doi:10.1093/braincomms/fcaf235. PMID: 40568416.
BibTeX
@article{zhao2025-40568416,
author = {Zhao, Sijia and Scholcz, Anna and Rouse, Matthew A and Klar, Verena Svenja and Ganse‐Dumrath, Akke and Toniolo, Sofia and Broulidakis, M. John and Ralph, Matthew A. Lambon and others},
title = {{Self- versus caregiver-reported apathy across neurological disorders}},
journal = {Brain Communications},
year = {2025},
doi = {10.1093/braincomms/fcaf235},
pmid = {40568416},
url = {https://doi.org/10.1093/braincomms/fcaf235}
}
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