Humanistic and financial burden experienced by informal care partners of patients with mild cognitive impairment due to Alzheimer's disease and dementia due to Alzheimer's disease: Results from real‐world survey
Bibliographic record
Abstract
BACKGROUND: The burden of care for patients with Alzheimer's disease (AD) often falls to family members. We aimed to explore burden experienced by informal care partners of patients with mild cognitive impairment (MCI) and dementia (both due to AD), across disease severity stages. METHOD: Data were drawn from the Adelphi Real World AD Disease Specific Programme™, a cross-sectional survey of physicians, their patients with MCI due to AD or dementia due to AD (clinically diagnosed or biomarker confirmed) and care partners in Canada, France, Germany, Italy, Spain, the United Kingdom, Japan and the United States, between December 2022 - March 2024. Physicians were asked to report data on Mini-Mental State Examination (MMSE) scores for their next nine consulting patients, followed by one patient with a biomarker-confirmed MCI due to AD diagnosis. Care partners self-reported their care activities, and impact of caring responsibilities on their lifestyle and health. Disease severity was categorised using the patient's current MMSE score. Analyses were descriptive. RESULT: Overall, 829 physicians provided data for 4202 MCI/dementia due to AD patients (10.3% with an MMSE of 26-30, 37.8% 21-25, 46.7% 11-20, 5.3% 0-10); 484 care partners self-reported data. Care partners had a mean (standard deviation) age of 61.6 (14.7) years and 64.8% were female. Most were the patients' partner/spouse (45.9%) or child (37.0%). Care partners reported helping patients take medication when required (30.0% of care partners for patients with an MMSE of 26-30; 48.8% 21-25; 71.7% 11-20; 87.1% 0-10), remembering/making appointments (56.7%; 47.5%; 66.1%; 77.4%) and preparing food (30.0%; 48.8%; 65.0%; 87.1%). Care partners reported having less time to themselves (27.6%; 38.2%; 50.6%; 62.1%), decreased social activities (17.2%; 22.4%; 28.6%; 27.6%) and neglecting their own health (6.9%; 5.9%; 14.7%; 24.1%). Care partners also reported experiencing stress (28.1%; 43.1%; 40.9%; 71.0%), anxiety (34.4%; 32.5%; 35.4%; 41.9%) and back pain (34.4%; 33.1%; 31.5%; 32.3%). CONCLUSION: Care partners of patients with MCI/ dementia due to AD experience burden across various aspects of their life, often neglecting personal time and their health as a result of caregiving. Ensuring early interventions to slow disease progression is key to reducing care partner burden.
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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 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| 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".