Diagnostic disclosure in dementia: an opportunity for intervention?

Husband, Hilary J.

doi:10.1002/1099-1166(200006)15:6<544::aid-gps241>3.0.co;2-8

Cited by 80 publications

(72 citation statements)

References 10 publications

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“…Several studies suggest that GPs also consider dementia a stigma (Cahill et al, 2008;Husband, 2000;Iliffe, Manthorpe and Eden, 2003;Kaduszkiewicz, Bachmann, and van der Bussche, 2008;Moore and Cahill, 2013;Pentzek, Fuchs and Abholz, 2005;Van Hout et al, 2000;Vernooij-Dassen et al, 2005).…”

Section: Perception Of Dementia As Stigmacontrasting

confidence: 98%

Stigma and GPs’ perceptions of dementia

Gove

Downs

Vernooij-Dassen

et al. 2015

Aging & Mental Health

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AcknowledgementsWe are grateful for the GPs who consented to be part of the study and who generously shared their time and experiences with us. We also thank Dr Jürgen Staadt and Ms Julie Fraser for their assistance with coding and Prof. Rob Newell (formerly of the University of Bradford) for his active involvement in the research this paper draws on. 2 Financial supportThe study was funded by Alzheimer Europe (Luxembourg) in the form of tuition fees for Dianne Gove for her PhD study. Alzheimer Europe played no role in the design, execution, analysis and interpretation of data, or writing of the study. Declaration of contribution of authorsAll named authors have made a substantial contribution to the conception and design, or analysis and interpretation of the data, and the drafting and revision of the article for important intellectual content. They have also approved the version to be published. Statement of conflict of interestsNone declared. Word countMain body of text: 5118 words ResultsThree themes emerged from the analysis: 1. "making sense of dementia", 2. "relating perceptions of dementia to oneself" and 3. "considering the consequences of dementia". GPs' perceptions of dementia mapped onto current conceptualizations of stigma. Perceptions about dementia that were linked to their own existential anxiety and to a perceived similarity between people with dementia and themselves were particularly salient. GPs perceived dementia as a stigma which was gradually being overcome but that stigma still hindered timely diagnosis. They provided examples of structural discrimination within the health service, including lack of time for patients and shortcomings in training that were to the detriment of people with dementia. ConclusionMeasures to involve GPs in tackling stigma should include training and opportunities to explore how they perceive dementia, as well as support to address structural discrimination.

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Section: Perception Of Dementia As Stigmacontrasting

confidence: 98%

Stigma and GPs’ perceptions of dementia

Gove

Downs

Vernooij-Dassen

et al. 2015

Aging & Mental Health

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“…In the first, no patients seem to have been harmed by the information, although they did use a series of psyche logical mechanisms to protect themselves including denial, dissociation of affect, externalization, displacement, and somatization (Bahro et al, 1995). The other showed that patients' most common worries related to fear of others finding out, fears of social embarrassment, long-term dependency needs, and not being listened to (Husband, 2000). Most health professionals who work closely with patients with dementia believe that such concerns are unwarranted, that telling the patient the diagnosis only rarely elicits an adverse reaction, and this view is supported by this study.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of Patients With Mild Dementia and Their Carers Towards Disclosure of the Diagnosis

Pinner

Bouman

2003

Int. Psychogeriatr.

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Objectiue: To determine the attitudes of patients with mild dementia and their carers towards the disclosure of diagnoses of cancer and dementia and whether there are differences between these groups. To determine whether any major adverse events occurred following disclosure of diagnosis of dementia. Design: A prospective study followed by a retrospective case-note study after 1 year. Participants and Setting: Fifty patients with mild dementia and their carers were recruited from a memory clinic in Nottingham, UK, and an oldage psychiatrist, using a semistructured questionnaire, separately interviewed them. Measures: Questions related to whether patients and their carers wished to be told diagnoses of cancer and dementia; the reasons for this; whether they would want treatment and make use of predictive testing if available were included. At 1-year follow-up whether antidepressants had been prescribed and whether any catastrophic reaction had occurred following disclosure of diagnosis. Results: An overwhelming majority of patients with mild dementia wished to be informed of their diagnosis (92%); even more (98%) of the same patient sample reported wanting disclosure of a hypothetical diagnosis of cancer. A higher proportion (98%) of carers would wish to be told if they were to develop either dementia or cancer. All patients and carers would like access to treatment for dementia. A total of 88% of patients and 86% of carers would make use of a predictive test of Alzheimer's disease. Before receiving a diagnosis of mild dementia, only 28% of patients had insight that they may have dementia. Only a quarter (26%) of carers did not want the doctor to disclose the diagnosis of dementia to the patient. After 1 year, 6% of the original sample had developed a depressive illness requiring antidepressant treatment and no major incidents had occurred following disclosure of diagnosis. Conclusions: There has been a growing debate on whether patients with dementia should be informed of their diagnosis. Until recently, little was known about the views of patients themselves. This study shows that the vast majority of patients with mild dementia wish to be fully informed. Despite increasing awareness, a quarter of carers still do not wish their relative to be informed, though wish to be informed if they themselves were to develop (continued)

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“…This may be expected as the public fear Alzheimer's more than heart disease, diabetes or stroke [74]. Specific concerns include fear of others finding out, fear of social embarrassment, long term dependency needs and not being listened to [75]. Consequently, clinicians are more willing to use the word "Alzheimer's disease" with relatives and prefer "memory problems" with sufferers themselves [76].…”

Section: What Do Patients Want To Know?mentioning

confidence: 99%

Reluctance to disclose difficult diagnoses: a narrative review comparing communication by psychiatrists and oncologists

Mitchell

2007

Support Care Cancer

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Psychiatrists and general practitioners may be equally reluctant to reveal difficult diagnoses and prognoses of conditions such as schizophrenia and dementia. The reluctance to reveal a difficult diagnosis may be a routine, but little acknowledged the aspect of medical care that should be incorporated into undergraduate and postgraduate education and openly discussed during peer group supervision.

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Diagnostic disclosure in dementia: an opportunity for intervention?

Cited by 80 publications

References 10 publications

Stigma and GPs’ perceptions of dementia

Stigma and GPs’ perceptions of dementia

Attitudes of Patients With Mild Dementia and Their Carers Towards Disclosure of the Diagnosis

Reluctance to disclose difficult diagnoses: a narrative review comparing communication by psychiatrists and oncologists

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