EXPLORING THE EVERYDAY EXPERIENCES OF FAMILY CAREGIVERS OF PEOPLE LIVING WITH DEMENTIA: A LONGITUDINAL DIARY STUDY
Bibliographic record
Abstract
Abstract People living with dementia rely largely on the support of unpaid family caregivers to remain living at home in the community. The strain created by this dependence is evidenced by high rates of distress among caregivers of people living with dementia and underscores the importance of access to appropriate formal and informal supports for this group. Providing tailored and meaningful supports and services to families requires a good understanding of the multidimensional and dynamic nature of the caregiving experience. Our study employed longitudinal qualitative methodology to understand how caregivers of people living with dementia were experiencing progression of the disease and shifting support needs over a two year-period. Fourteen family caregivers in British Columbia, Canada, wrote monthly diaries reflecting on their experience of caregiving and navigating supports. Thematic analysis of 137 diary entries shed light on different facets of caregiving experience, including psychological and emotional challenges (e.g., feeling overwhelmed, lacking a sense of control, trouble maintaining sense of self) and difficulties navigating formal care and supports (e.g., lack of access to services and information, lack of flexibility in service delivery). However, accounts also reflected participants’ resilience, through a range of coping strategies adopted to resolve problems encountered in caregiving, drawing on emotional and practical support from family, friends, and community. The diaries offer critical perspectives on gaps and inadequacies in formal supports for family caregivers and opportunities to better support the health and wellness of caregivers and recipients through dementia care policy and practice.
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 | 0.003 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.004 | 0.002 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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".