P2‐345: Early‐onset dementia: Needs of patients and carers in the early diagnostic stage
Bibliographic record
Abstract
Although the prevalence, incidence and burden of illness for patients and carers in late onset dementia (LOD; >65 years of age) has been well-studied for over 40 years, these are less well known in early onset dementia (EOD; dementia occurring in the under 65 years of age group). Caregivers of individuals with EOD are likely to be working at the time of dementia diagnosis, and more than half may need to reduce their hours or stop working due to their caregiving role. However, in most cities and countries, services for patients with dementia are based on the identified needs of the over 65 years of age group and their caregivers. To develop services for younger people with dementia and their caregivers, it is important to define the needs of service users according to age, activity and social relations. We are conducting a comparative mixed methods (quantitative and qualitative) study to explore the characteristics and support needs of patients and carers with EOD and LOD. Survey data including demographics, quality of life and caregiver burden are collected from patients and carers. Audio-taped interviews are conducted with data transcribed, uploaded to the computer program NVIVO 9 and analyzed for codes and interrelated themes. Qualitative findings will be corroborated through focus group interviews with EOD and LOD caregivers. The mixed methodology allows detailed understanding of EOD patients and carer needs. Qualitative interviews have been completed with 7 EOD couples. Shortly following EOD diagnosis significant changes occur in caregivers' work, social and personal life; reduced quality of life, loss of independence, loss of intimacy and change in the marital relationship are recurrent themes. Uncertainty, frustration and exhaustion are major emotional sequelae. Lack of support, resources, and guidelines in regards to the patient's present state and future planning were also concerns among caregivers. A roadmap and potentially a consistent navigator' to provide guidance over the first few months in unraveling community services and describing potential dementia progression for patients, caregivers and young family members is critically important in preparing and supporting those living with EOD to maintain quality of life, mood and relationships.
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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 | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.010 | 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".