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Prevalence and outcomes of recorded dementia vary by data source: a population cohort study of 133,407 older adults
Penfold RS, Wilkinson T, Stirland LE, MacRae C, Russ TC, Shenkin SD, Vardy E, Anand A et al.. medRxiv, 2026-01-09
Topic: Health services, long-term care and technology
Background Dementia diagnoses are captured across multiple routine data sources, but discrepancies between these may affect care and research. This study determined the prevalence and overlap of recorded dementia across primary care, hospital, and community prescribing data sources in a UK regional cohort, and examined whether outcomes differed by the setting in which dementia was first recorded. Methods Retrospective cohort study of adults ≥65 years (n=133,407) in a large Scottish health board. Dementia diagnoses recorded from 01/04/2016 to 01/04/2020 were identified across linked primary care, hospital discharge, and prescribing records. Associations between source of first recorded dementia diagnosis and subsequent mortality and emergency hospitalisation were estimated using Cox proportional hazards and Fine–Gray competing risks models. Results At baseline (01/04/2016), 7544/133407 individuals (5.7%) had recorded dementia: 95.1% in primary care, 73.3% in hospital, and 54.3% in prescribing records. Over four years, 7359 of the remaining 125,863 individuals (5.8%) had newly recorded dementia: 70.2% in primary care, 22.2% in hospital, and 7.6% in prescribing records. Only 35.9% of hospital-recorded diagnoses were coded in primary care records within a year. People first diagnosed in hospital were older, more frail, more socioeconomically deprived, and had higher mortality than those first diagnosed in primary care (<30days: adjusted Hazard Ratio (aHR) 8.96, 95%CI 6.94-13.52; >365days: aHR 1.29, 95%CI 1.19-1.41). Conclusions Dementia is variably recorded across routine datasets, and the setting in which dementia is first recorded identifies groups with markedly different prognosis. Improved data source integration and scrutiny of hospital-based diagnostic pathways are needed to ensure diagnoses are reliably transferred and people with dementia receive timely, equitable post-diagnostic care.
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APA 7th
Penfold, R. S., Wilkinson, T., Stirland, L. E., MacRae, C., Russ, T. C., Shenkin, S. D., et al. (2026). Prevalence and outcomes of recorded dementia vary by data source: a population cohort study of 133,407 older adults. medRxiv. https://doi.org/10.64898/2026.01.05.26343434
Vancouver
Penfold RS, Wilkinson T, Stirland LE, MacRae C, Russ TC, Shenkin SD, et al. Prevalence and outcomes of recorded dementia vary by data source: a population cohort study of 133,407 older adults. medRxiv. 2026. doi:10.64898/2026.01.05.26343434.
BibTeX
@article{penfold2026-4fdc17ca,
author = {Penfold, R. S. and Wilkinson, T. and Stirland, L. E. and MacRae, C. and Russ, T. C. and Shenkin, S. D. and Vardy, E. and Anand, A. and others},
title = {{Prevalence and outcomes of recorded dementia vary by data source: a population cohort study of 133,407 older adults}},
journal = {medRxiv},
year = {2026},
doi = {10.64898/2026.01.05.26343434},
url = {https://doi.org/10.64898/2026.01.05.26343434}
}
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Key findings
- Results At baseline (01/04/2016), 7544/133407 individuals (5.7%) had recorded dementia: 95.1% in primary care, 73.3% in hospital, and 54.3% in prescribing records.
Study details
- Study designcohort study
- Participants133,407
- Effect size5.7%; 95.1%; 73.3%
- Evidence strengthModerate
How this study scored 16/100
Preprint — not yet peer-reviewed. It scored 53 on the same rubric, but non-peer-reviewed sources are capped at 16, so it shows as 16. Scored zero for randomised / blinded because the record does not state it. We have no data on times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 33 of the 62 points we could judge it on, which is 53 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 2 / 10 | Tier 4 — not a peer-reviewed journal (medRxiv) |
| Journal's citation record | 0 / 4 | Not a journal article, so the journal's record does not count |
| Study design | 7 / 12 | A cohort study following people over time |
| Strength of evidence | 3 / 5 | Rated “moderate” in our summary |
| Peer-review validation | 4 / 10 | Preprint — not yet peer-reviewed. Hosted on a preprint server. |
| How recent | 5 / 5 | 2026 — within 1 year(s) of the newest study here |
| Sample size | 4 / 4 | 133,407 participants |
| Effect reported | 2 / 3 | Effect reported as a number, without an interval or test |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 2 / 2 | Free to read |
| Points | 33 / 62 | Scored on 12 of 20 parts. We have no data for the rest, so they are left out: 33 of the 62 points we could judge it on is 53 out of 100. |
| Total | 53 / 100 | Capped to 16 because this is not a peer-reviewed article. |
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