The bubble of normalisation: a qualitative study of carers of people with dementia who do not seek help for a diagnosis

Parker, Michelle, Barlow, Sally, Hoe, Juanita ORCID: and Aitken, Leanne M. (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. 089198872110600. ISSN 0891-9887

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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.

Item Type: Article
Identifier: 10.1177/08919887211060018
Keywords: dementia, diagnosis, carer, stigma, normalisation, help seeking
Subjects: Medicine and health > Clinical medicine > Dementia
Medicine and health > Clinical medicine > Clinical care
Related URLs:
Depositing User: Juanita Hoe
Date Deposited: 10 Jan 2022 14:46
Last Modified: 06 Feb 2024 16:08


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