Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice
Open accessAbstract
BACKGROUND: Dementia is an insidious and stigmatised condition, and research indicates that GPs find communicating this diagnosis particularly problematic. Delays in diagnosis may impede optimal patient care. Little research has been published on Australian GPs' perceptions of barriers to disclosing the diagnosis of dementia. AIM: To explore GPs' perceptions of barriers to disclosing the diagnosis of dementia. DESIGN AND SETTING: Qualitative study in the general practice consultation context. METHOD: Semi-structured, audiorecorded interviews were conducted with GPs from three capital cities and one regional centre in Australia. Interviews were transcribed verbatim and thematic analysis was conducted. RESULTS: GPs' lack of confidence in having a correct diagnosis, concern to act in patients' best interests, and the stigma associated with the 'dementia' label influenced the disclosure process. GPs found it challenging to identify dementia in the consultation context. It was difficult to raise the issue when both the patient and their family/carer(s) ignore/are unaware of symptoms of cognitive decline. Referral to a specialist was favoured to confirm suspicions, although this did not always result in a definitive diagnosis. Opinions differed as to whether the GP or the specialist was better placed to deliver the diagnosis. GPs preferred disclosure to the patient with his/her family/carer(s) present; associated issues of confidentiality and the importance of offering hope emerged. The severity of the patient's dementia also guided the diagnostic disclosure process. GPs often used euphemisms for dementia when disclosing the diagnosis, to soften the message. CONCLUSION: Complex issues surround the disclosure of dementia. Communicating this diagnosis remains particularly challenging for many GPs.
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Euphemisms are often used when talking about dementia at the time of disclosure in order to soften the impact of the news.
“As highlighted in the study by Phillips et al, euphemisms are often used in talking about dementia at the time of disclosure in order to mitigate the impact of the news.27”
From The Unique Experience of Spouses in Early-Onset Dementia (2013) · cites this paper as [27]
Lack of GP confidence in diagnosing, or lack of knowledge of dementia in primary care may result in issues around dementia diagnosis, resulting in issues with defining dementia date of diagnosis.
“Lack of GP confidence in diagnosing, or lack of knowledge of dementia in primary care may result in issues around dementia diagnosis, resulting in issues with defining dementia date of diagnosis [66].”
From The Impact of demographic, socio-economic and geographic factors on mortality risk among people living with dementia in England (2002–2016) (2021) · cites this paper as [66]
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- Authors
- Phillips, J., Pond, C. D., Paterson, N. E., Howell, C., Shell, A., Stocks, N. P., Goode, S. M., & Marley, J. E.
- Affiliations
- University of Newcastle Australia (AU)
- UNSW Sydney (AU)
- Venue
- British Journal of General Practice
- Published
- 2012-08
- Volume
- 62
- Issue
- 601
- Pages
- e546-e553
- ISSN
- 0960-1643 (ISSN-L)
- 1478-5242
- PMC
- PMC3404332
- OpenAlex
- W2117175456
- Cited by
- 75
- References
- 33
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 6 · 2023: 5 · 2022: 9 · 2021: 7 · 2020: 4 · 2019: 6 · 2018: 5 · 2017: 4 · 2016: 5 · 2015: 4 · 2014: 5 · 2013: 4 · 2012: 2
- FWCI
- 3.42
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- British Journal of General Practice (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Adelaide Research & Scholarship (AR&S) (University of Adelaide) (submittedVersion)
- NOVA (University of Newcastle Australia) (submittedVersion)
- Funders
- Australian Government
- Medical Research Council
- National Health and Medical Research Council (351220)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- dementia, diagnosis disclosure, general practitioners, barriers to disclosure, physician confidence, dementia stigma, cognitive decline, specialist referral, confidentiality, euphemism, family involvement, delayed diagnosis
- MeSH terms
- Attitude of Health Personnel, Australia, Confidentiality, Dementia, Humans, Perception, Physician-Patient Relations, Truth Disclosure, Multicenter Studies as Topic, Randomized Controlled Trials as Topic, Qualitative Research, General Practice
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
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