Our youth, our compass: families walking with younger‐onset dementia shine light on stigma
Bibliographic record
Abstract
Abstract Purpose For youth walking with a parent’s younger‐onset dementia diagnosis, our voices are the softest, yet our journey is often the hardest. We are helping to open the shades and bring light. We are telling the stories of our Mother’s and our Father’s. We are the survivors who choose to advocate for a more just world for our families. Through the EmpowermentPLUS Model, we are bringing strength to stigma. Project Plan The three components of the EmpowermentPLUS Model include (1) recognize, (2) respond, and (3) empowerx2. For example, when I feel I am experiencing stigma as a daughter of my parent living with dementia–at a family party, grocery store, park or hospital, I am (A) able to recognize it, and (B) I have the tools to respond, rather than responding with fight, flight, or freeze and (C) the last piece is that my mindful and informed response empowers me as a daughter, and the PLUS symbolizes that the person who triggered the stigma is also empowered by being educated. Outcomes During our international Youth Summit, with support from Alzheimer’s Society of Canada, Alzheimer’s Disease International and London School of Economics, nearly 100 youth worldwide shared personal stories of when they experienced stigma as a younger family walking with dementia, and we taught the EmpowermentPLUS Model as a way to grapple and dismantle it. Conclusion We are building our alliance of empowered young ambassadors, and expect more than 200 youth at Lorenzo’s Youth Summit 2024. Our Founding Executive Director, Diana Shulla Cose, and another member of our Lorenzo’s House community will share the youth voices and details of Lorenzo’s House strength to stigma work.
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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 | 0.005 | 0.012 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.018 | 0.006 |
| Scholarly communication | 0.005 | 0.006 |
| Open science | 0.001 | 0.010 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.008 | 0.001 |
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".