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We need to talk about dementia: the role of stigma and the social network in preventing help seeking for a diagnosis of dementia

Parker, M. J. (2020). We need to talk about dementia: the role of stigma and the social network in preventing help seeking for a diagnosis of dementia. (Unpublished Doctoral thesis, City, University of London)

Abstract

Background: Worldwide it is estimated that over 50 million people are living with dementia but that up to 50% of people in high income countries and 95% of people in low and middle income countries have not received a formal diagnosis. There is an international drive to increase the number of people receiving a formal dementia diagnosis and for them to receive this diagnosis early in the disease process. In the UK around two thirds of people living with dementia have a formal diagnosis and initiatives in primary and secondary care have been aimed at increasing formal diagnosis rates. Research on the pathway to a dementia diagnosis reveals a complex, often lengthy process, in which a person with symptoms of dementia and their family make sense of what is happening and decide to seek help. However much less is known about the people who do not seek help and may remain without a formal diagnosis.

Aim: The overall aim of this study was to understand why people may not seek help for a diagnosis of dementia. This involved exploring the characteristics and experiences of a group of people who were not actively seeking help, but were identified to have undiagnosed dementia, following emergency admission to an acute hospital with a physical health problem.

Methods: This mixed methods study, set within a critical realist framework, had four phases – 1) a systematic review of 32 studies of the barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people living with dementia; 2) semi-structured interviews with 12 carers of people diagnosed with dementia during or following an acute hospital admission in the greater London area; 3) a retrospective cohort analysis of 1830 people referred to a memory clinic in inner London and; 4) an integration of findings from the first three phases.

Findings: The systematic review identified ten barrier themes and three facilitator themes. Multiple barriers compounded the delay to diagnosis and more than one facilitator was often required for help seeking to take place. An analysis of interviews with 12 carers of people diagnosed with dementia following an acute hospital admission, illustrated how carers created a ‘bubble of normalisation’ around themselves and the person living with dementia, to construct explanations that rejected a label of dementia and protect the person living with dementia from a loss of independence, discrimination and prejudice. There were missed opportunities to initiate help seeking and carers were fearful of talking about dementia. The diagnosis burst their bubble and left many feeling unsupported, still unable to talk about dementia and questioning the value of the diagnosis.

Analysis of referrals to a memory clinic revealed that people referred to the memory clinic by the acute hospital (people considered not to be actively seeking help for a diagnosis), were significantly more likely to be older and of white ethnicity than people referred by their GP. People diagnosed with dementia following referral from the acute hospital were more likely to have severe dementia, more likely to have died 12 months post referral and more likely to have had hospital admissions before and after referral. People referred by their GP were more likely to be diagnosed with cognitive impairment or be cognitively intact following their assessment.

In phase four the integration of data from the first three study phases resulted in five integrated themes: Fear of the label of dementia, alternative explanations, preserving autonomy, independence and the way of life, the potential of informal networks and the role of health care professionals. Following a process of abduction and retroduction a model depicting three social structures and generative mechanisms which had the power to prevent help seeking for a dementia diagnosis was presented. The model proposed that stigma related to dementia and the threat this posed to independence and autonomy could prevent help seeking when the carer’s social network ties shared these views and the carer was unable to share their concerns with others.

Conclusion: This study provides a unique contribution to the research on the pathway to a dementia diagnosis as it explores the experiences of a group of people who were not actively seeking help for a diagnosis. The study highlights the role stigma plays in preventing help seeking and the importance of the social network as a mediating factor with the power to prevent or facilitate help seeking. These findings suggest that if a formal diagnosis early in the disease process is to be beneficial, the broader societal response to people living with dementia needs to be positive and inclusive, lending support to the growing focus on dementia friendly communities and a social citizenship approach to dementia care and support. The difficulties carers experienced in talking about dementia should be considered as an important opportunity for interventions that encourage and support open communication within social networks about dementia.

Publication Type: Thesis (Doctoral)
Subjects: R Medicine > RT Nursing
Departments: Doctoral Theses
Doctoral Theses > School of Health Sciences Doctoral Theses
School of Health Sciences
Date available in CRO: 18 Aug 2021 15:25
Date deposited: 18 August 2021
URI: https://openaccess.city.ac.uk/id/eprint/26626
[img] Text - Accepted Version
This document is not freely accessible until 31 August 2024 due to copyright restrictions.

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[img] Text - Accepted Version
This document is not freely accessible until 31 August 2024 due to copyright restrictions.

To request a copy, please use the button below.

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