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Record W2140105541 · doi:10.1177/1471301209354026

Challenges to improving end of life care of people with advanced dementia in the UK

2010· article· en· W2140105541 on OpenAlex
Ingela Thuné‐Boyle, Elizabeth L Sampson, Louise Jones, Michael J.E. Sternberg, Dan R. Lee, Martin Blanchard

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

fundA Canadian funder is recorded on the work.
no affNo Canadian affiliation: this work is invisible to an affiliation-only frame.
No Canadian affiliation. An affiliation-only frame, the usual design, would never have seen this work. It is one of the works that make the case for inverting the frame.

Bibliographic record

VenueDementia · 2010
Typearticle
Languageen
FieldMedicine
TopicPalliative Care and End-of-Life Issues
Canadian institutionsnot available
FundersLIFE programmeAlzheimer Society
KeywordsDementiaPsychological interventionPalliative careAdvance care planningMedicineEnd-of-life careNursingIntervention (counseling)Health careQualitative researchDisease

Abstract

fetched live from OpenAlex

The end of life care received by patients with advanced dementia and their carers is of increasing importance as the incidence of dementia is set to rise in the next 30 years. Currently, inappropriate admissions to hospital are common in the UK and patients are less likely to be referred to palliative care services, receive less pain control but undergo more invasive interventions compared to their cognitively intact counterparts. Patients and families are seldom informed of the terminal nature of dementia and advance care planning discussions are rare. The aim of this study was to improve the understanding of end of life care needs for this patient group and their carers, and to use this information to devise an intervention to improve care. Qualitative data were obtained from relatives of 20 patients with advanced dementia admitted to an inner London teaching hospital acute National Health Service (NHS) Trust and 21 health care professionals involved in their care. Framework analysis was used to analyse the transcripts. The results showed that participants’ understanding of dementia and its likely progress was poor. Provision of information regarding the future was rare despite high information needs. Attitudes regarding end of life care were often driven by the participant’s illness awareness. These attitudes served to guide the decision making process and appear to be a major barrier to the provision of more appropriate care. Implications for patient care are discussed and suggestions for future interventions are made.

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.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.000
metaresearch head score (Gemma)0.000
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.046
Threshold uncertainty score0.299

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0000.000
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

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.

Opus teacher head0.044
GPT teacher head0.346
Teacher spread0.301 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it