Challenges when monitoring and providing care to loved ones,Perspectives of Dementia caregivers in Canada
Bibliographic record
Abstract
Abstract Background Family caregivers see firsthand the progression of their care recipient’s dementia and know every aspect of their lives and needs. They make important decisions on interventions and care. Currently, there are no measures that account for caregivers’ perspectives when evaluating the impact of dementia or interventions. The aim of this study was to explore the perspectives of caregivers’ of people living with dementia across Canada to generate domains for a new caregiver‐reported measure. Method Participants were recruited across Canada. Listening sessions were conducted virtually over three months, using open‐ended questions to encourage participants to share their perspectives. A semi‐structured interview guide was developed to facilitate the sessions. The interviewer asked questions to encourage caregivers to share their experiences on providing care, dementia monitoring, treatment impact and seeking alternative care. The data were coded and analyzed using NVivo. A thematic analysis approach was applied by two reviewers to analyze the data. Result Seven listening sessions were conducted with 34 caregivers who were providing care to their loved ones with dementia. Seventy‐four percent of the participants were women and 59% had 6 or more years of caregiving experience. Each listening session included three to six caregivers and was approximately one hour long. Example of codes included gait limitations, distance walked, difficulties with memory, and changes in behaviour. Overall, data were organized into three broad themes (i) psychosocial impact of dementia, (ii) physical and emotional changes for dementia monitoring and treatment, (iii) symptomalogy changes for dementia monitoring and treatment. Conclusion This study explored the perspective of caregivers across Canada, the activities and symptoms that are important to assess when evaluating dementia progression. It also questioned caregivers on how best to evaluate treatment effects. These findings may help identify strategies to better support caregivers and improve the quality of life of individuals living with dementia. Furthermore, the findings of this study can be a resource to help healthcare professionals, communities, and policymakers to provide better support for caregivers and the lives of individuals with dementia.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.004 | 0.010 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.003 |
| Science and technology studies | 0.026 | 0.006 |
| Scholarly communication | 0.006 | 0.002 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.001 | 0.003 |
| 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".