Unraveling impaired awareness: experiences of people with dementia, Huntington’s disease and Korsakoff’s syndrome, and their informal caregivers
Hester Fidder, Esther de Groot, Marike E. de Boer, Marina R. Ekkel, Ruth B. Veenhuizen, Martin Smalbrugge, Anouk M. van Loon · 2025
Read Unraveling impaired awareness: experiences of people with dementia, Huntington’s disease and Korsakoff’s syndrome, and their informal caregivers by Hester Fidder, Esther de Groot, Marike E. de Boer, Marina R. Ekkel, Ruth B. Veenhuizen, Martin Smalbrugge, Anouk M. van Loon (2025) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-12805700.txt.
Description
Fidder and co-authors present a 2025 interview study on impaired awareness in brain diseases. People with dementia, Huntington's disease, or Korsakoff's syndrome often do not grasp their own limits. That gap shapes daily life and care. The team held deep interviews with fourteen patient and caregiver pairs to hear both sides.
Four themes emerged: how the lack of awareness shows, how caregivers see it, how they respond, and what follows. The themes spanned diagnosis, body and mind function, social behavior, and daily risks. Patients mostly felt no problem from the gap. Caregivers, by contrast, described heavy strain. The authors offer the map to guide support for both sides.
Catalog record
| CREATOR | Hester Fidder, Esther de Groot, Marike E. de Boer, Marina R. Ekkel, Ruth B. Veenhuizen, Martin Smalbrugge, Anouk M. van Loon |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 44 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |