Priorities for supported decision‐making with persons with dementia identified by lived experts
Bibliographic record
Abstract
BACKGROUND: The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions that affect them. This includes accessing support from trusted others, such as family and friends. Yet persons with dementia are often excluded from participating in decisions that matter most to them. METHOD: This presentation summarizes findings from the thematic analysis of two focus groups with persons with dementia (group 1, n = 3) and families (group 2, n = 8) convened as advisory group members to discuss their lived experience with supported decision-making. The presentation also compares these priorities to the results of a scoping review of the literature (55 articles) which were shared with advisory group members to identify research priorities and gaps. RESULTS: Our thematic analysis of deliberations with persons with dementia revealed that time and space to support participation and an emphasis on maintained capacities are critical in empowering people with dementia to express their preferences. Our analysis further suggested that pressure to make immediate decisions and overlooking familial expertise compromises inclusion for both persons with dementia and their families. Decisions regarding daily life and relocation were identified as decisional domains of high importance to persons with dementia and/or their families. The importance of trust, adapted communication and inclusion in daily care featured prominently in our scoping review results. However, the temporal aspects of supported decision, familial exclusion, and supported decision-making around relocation, identified as priorities by advisory group members, were relatively absent from our scoping review findings. CONCLUSION: Plans for the further development of this work, in light of these results will be discussed.
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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 | 0.083 | 0.108 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.005 | 0.003 |
| Science and technology studies | 0.011 | 0.009 |
| Scholarly communication | 0.013 | 0.013 |
| Open science | 0.003 | 0.021 |
| Research integrity | 0.005 | 0.007 |
| Insufficient payload (model declined to judge) | 0.005 | 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".