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The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis

Parker, M. ORCID: 0000-0002-2600-2659, Barlow, S. ORCID: 0000-0002-2737-8287, Hoe, J. ORCID: 0000-0003-4647-8950 & Aitken, L. M. ORCID: 0000-0001-5722-9090 (2021). The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis. Journal of Geriatric Psychiatry and Neurology, doi: 10.1177/08919887211060018

Abstract

OBJECTIVE: Improving dementia diagnosis rates are a key feature of dementia strategy and policy worldwide. This study aimed to explore the experience of carers of people diagnosed with dementia during or following a hospital admission in order to identify factors that had prevented them from seeking help beforehand. Semi-structured interviews were conducted with 12 informal carers including adults caring for a parent, a friend or a spouse diagnosed with dementia between 2010-2019, following an acute hospital admission for a physical health problem, having not sought help previously.

MAIN FINDINGS: Carers created a 'bubble of normalisation' around themselves and the person living with dementia (PLWD) to reject the label of dementia and protect the PLWD from a loss of independence, discrimination and prejudice they felt would be the result of a diagnosis. Carers struggled to talk to the PLWD about dementia reinforcing denial and stigma. Post-diagnosis carers felt unsupported and questioned the value of diagnosis.

PRINCIPAL CONCLUSIONS: Stigma related to images of dementia as a disease that takes away independence and identity prevented discussion about dementia between carers and the PLWD. A lack of open discussion about memory concerns between health care professionals and carers also served to delay diagnosis.

Publication Type: Article
Additional Information: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Publisher Keywords: dementia, diagnosis, carer, stigma, normalisation, help seeking
Subjects: R Medicine > RC Internal medicine
R Medicine > RT Nursing
Departments: School of Health Sciences > Nursing
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