Facing the void: The experience of Australian care partners and people living with dementia following diagnosis
Bibliographic record
Abstract
Abstract Background The COGNISANCE (Co‐designing dementia diagnosis and post diagnostic support) project aims to co‐design and produce resources that will improve communication of dementia diagnoses and support for people living with dementia (PLWD) and care partners following diagnosis. Internationally, dementia guidelines reinforce the need for post‐diagnostic support, however PLWD and care partners are frequently dissatisfied. COGNISANCE is being conducted in five countries; Poland, UK, Netherlands, Canada and Australia. This presentation reports on current Australian experiences of support from the perspectives of PLWD, care partners and health and social care practitioners. Methods Interviews and focus groups were conducted using online video conferencing with 8 PLWD who had been diagnosed with dementia in the past 24 months and 17 care partners. Nineteen health or social care professionals were interviewed individually or in small groups via videoconferencing. Techniques used included word association exercises and projective interviewing ‐ projecting thoughts and feelings onto photographs of an (hypothetical) older couple receiving a diagnosis; and discussion of barriers and facilitators to post‐diagnostic support. Interviews were transcribed and thematically analysed. Results Key themes were that PLWD and care partners experienced lack of support and direction following diagnosis. Support information given at the time of diagnosis was usually minimal. PLWD described ‘an information vacuum’ and care partners felt lost, and at a loss of what to do next, or where to find practical or emotional support. The majority of care partners felt abandoned and wanted follow‐up after the diagnostic interview. Health care professionals were concerned but described difficulty in recommending useful supports because of lack of available/appropriate services, lack of knowledge of supports or therapeutic nihilism. Conclusion Post‐diagnostic support is inadequate and could be improved by follow‐up, better linking with services, provision of information and development of a support plan.
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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 | 0.010 | 0.025 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.023 | 0.013 |
| Scholarly communication | 0.009 | 0.007 |
| Open science | 0.003 | 0.017 |
| Research integrity | 0.004 | 0.008 |
| Insufficient payload (model declined to judge) | 0.003 | 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".