Engaging Persons With Young Onset Dementia and Their Families in the Evaluation of Social Programs: Processes and Lessons Learned
Bibliographic record
Abstract
There are few support services specifically for individuals living with young onset dementia (YOD) (age <65 years at diagnosis). To gain a better understanding of what individuals living with YOD desire in a day program, this project aimed to guide a collaborative re-development and evaluation of two new day programs in Southern Ontario. Using action research techniques and consultative processes, we worked with key stakeholder groups, alongside flexible and innovative methods, to engage individuals living with YOD, care partners, and staff. This project brings forward findings regarding processes to engage persons with YOD in research, beyond a biomedical framework (e.g., factors predicting institutionalization, the course and impact of neuropsychiatric symptoms), or focusing solely on information provided by family, care partners, or healthcare professionals. This article details two aims: 1) to document the research processes and approaches used to engage a range of participant groups, particularly younger persons with dementia, and describe the lessons learned, and 2) to provide reflections on the potential of Goal Attainment Scaling as an evaluation measure in the context of YOD programs.
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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 | 0.198 | 0.137 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.012 | 0.012 |
| Scholarly communication | 0.010 | 0.010 |
| Open science | 0.005 | 0.014 |
| Research integrity | 0.003 | 0.005 |
| Insufficient payload (model declined to judge) | 0.002 | 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".