Survey in people with dementia and their care partners on post‐diagnostic care in memory clinics: Data from the COGNISANCE study
Bibliographic record
Abstract
Abstract Background Recent literature calls for a focus on providing quality post diagnostic dementia care (Wong & Knapp, 2020). There is dissatisfaction among people with dementia (PwD) and care partners (CP) with post diagnostic dementia support (Hagan, 2020). To improve experiences of post diagnostic support for PwD and CP, it is vital to understand what factors influence their experience of post diagnostic support. Differences between PwD and CP could be used to tailor support to their respective needs and wishes. The aim of the present study is twofold. First, to determine which factors predict the satisfaction with post‐diagnostic support for PwD and CP. Second, to compare factors of PwD and CP that shape experiences of post diagnostic support. Method As part of the COGNISANCE project, a survey was developed and distributed among PwD and CP in five countries: Australia, Canada, the Netherlands, Poland, and the United Kingdom. The survey consisted of mostly closed questions on demographics, experiences of the diagnostic process, and post diagnostic support. Result The average age of the PWD respondents (N=91) was 74.3 (+‐ 10.0) and 60.1 (+‐ 14.4) that of the CP respondents (N=209). The majority of the PWD (57.1%) and CP (71.3%) were female. Support after a diagnosis was deemed helpful by 57.4% of the PWD and 62% of the CP. There is a significant association between whether PWD and CP were satisfied with support and their satisfaction with the diagnostic process, satisfaction with information on dementia and information on strategies to live well with dementia. For PWD, satisfaction with support is associated with the waiting time for a first appointment in the diagnostic process, the satisfaction with the waiting time, confidence in asking for help, confidence in handling future challenges and living positively with dementia. For CP, the satisfaction with support was associated with the presence of a care plan, their satisfaction with information on prognosis and information on services. Conclusion A significant minority of PwD and CP is not satisfied with the support following a diagnosis. Results suggest that information aspects and experiences in the diagnostic process impact on the satisfaction with dementia support.
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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 | 0.002 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| 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".