Dysphagia‐Related Burden in Caregivers of Persons with Early‐Stage Dementia: Impact of Disease Stage and Diet Level
Bibliographic record
Abstract
Abstract Background Caregiver burden, or the impact of caregiving, commonly occurs in caregivers of persons with dementia (PWD); however, prior research focused on caregiver burden in this population has not considered the impact of dysphagia. Therefore, the purpose of this study was to measure dysphagia‐specific burden in caregivers of PWD and examine its relationship to general caregiver burden, as well as the PWD’s current diet level and dementia severity. Method Data were collected from PWD‐caregiver dyads participating in a prospective, dysphagia‐focused clinical trial at the initial study visit. The Clinical Dementia Rating (CDR) scale was administered to dyads to determine dementia severity. The Zarit Burden Interview (Zarit) and Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) were administered to caregivers. Functional Oral Intake Scale (FOIS) scores were recorded for the PWD. Result Twenty‐nine dyads were included. Caregivers were 93% female with a mean age of 65 years. PWD were 21% female with a mean age of 80 years. The mean CARES score was 2.86 (range = 0‐26; SD = 3.43) and the mean Zarit score was 28.1 (range = 5‐65; SD = 16.64). The median FOIS score for PWD was 7 (range = 5‐7). The highest CARES values were reported for the following experiences: being worried about the future, fear of their care recipient choking, and feeling “anxious.” A one‐way analysis of variance revealed no differences in CARES scores based on CDR stage. A Kendall tau rank correlation coefficient revealed a significant moderate, negative association between FOIS and CARES scores (r = ‐0.52; p<.002); while the moderate, positive association Pearson correlation between CARES and Zarit scores (r = .40; p = .03) was also significant. Conclusion Findings revealed that dysphagia‐associated caregiver burden may trend similarly as general burden (Zarit) but is generally low in earlier stages of dementia. However, the more restrictive the PWD’s diet (lower FOIS scores), the greater the dysphagia‐related burden reported by caregivers. Higher ratings on specific CARES items can guide clinical decision‐making regarding support needed by caregivers of PWD with early‐stage disease. The relationship between dysphagia‐related burden and general burden may change with disease progression, warranting continued investigation.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".