Disclosing a diagnosis of dementia: a systematic review.

Bamford, Claire; Lamont, Sharon; Eccles, Martin; Robinson, Louise; May, Carl; Bond, John

doi:10.1002/gps.1050

Cited by 284Dementia and Cognitive Impairment ResearchPatient-Provider Communication in HealthcarePalliative Care and End-of-Life Issues

Disclosing a diagnosis of dementia: a systematic review.

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Bamford, Claire, Lamont, Sharon, Eccles, Martin, Robinson, Louise, May, Carl, Bond, John·2004·International Journal of Geriatric Psychiatry

DOI 10.1002/gps.1050

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Abstract

BACKGROUND: The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed. OBJECTIVE: To review empirical data regarding diagnostic disclosure in dementia. METHODS: Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis. RESULTS: Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers. CONCLUSIONS: Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure.

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Receiving a diagnosis of dementia has a major impact on psychological well-being for both persons with dementia and informal caregivers.
“Receiving a diagnosis of dementia has a major impact on psychological well-being, both for the persons with dementia as well as the informal caregivers (Bamford et al., 2004).”
From Mindfulness-Based Intervention for People With Dementia and Their Partners: Results of a Mixed-Methods Study. (2019) · cites this paper as Bamford et al., 2004

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Authors: Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C., & Bond, J.
Affiliations: Newcastle University (GB)
Corresponding author: Eccles, Martin
ORCID: Bamford, Claire
Robinson, Louise
May, Carl
Venue: International Journal of Geriatric Psychiatry
Publisher: Wiley
Published: 2004-01-28
Volume: 19
Issue: 2
Pages: 151-169
ISSN: 0885-6230 (ISSN-L)
1099-1166
DOI: 10.1002/gps.1050
OpenAlex: W2030702569
Cited by: 284
References: 76
Citations by year: 2026: 1 · 2025: 9 · 2024: 3 · 2023: 1 · 2022: 9 · 2021: 10 · 2020: 9 · 2019: 11 · 2018: 17 · 2017: 11 · 2016: 11 · 2015: 12 · 2014: 16 · 2013: 18 · 2012: 34
FWCI: 2.26
Type: journal article
Language: en
Open access: green
doi.org
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations: International Journal of Geriatric Psychiatry (publishedVersion)
PubMed (publishedVersion)
ePrints Soton (University of Southampton) (submittedVersion)
Newcastle University ePrints (Newcastle Univesity)
Funders: Medical Research Council
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, caregivers, people with dementia, professional practice
MeSH terms: Attitude of Health Personnel, Attitude to Health, Dementia, Female, Humans, Male, Middle Aged, Research Design, Truth Disclosure, Caregivers

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Disclosing a diagnosis of dementia: a systematic review.

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