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CoRD

Promoting Brain Health in clinical communication: Exploring if, when and how clinicians communicate the risk of dementia (CoRD).

Overview of the project

Globally, dementia is the most frequent form of degenerative condition in older adults and poses a major health and economic crisis (costing over $1 trillion) (Prince et al, 2015). Attempts to find a cure have been unsuccessful, prompting a focus on interventions aimed at promoting Brain Health. There is growing evidence that modifying health behaviours may prevent or delay dementia by 40% (ARUK, 2021). Prevention strategies include, improved diet, smoking cessation, reduced alcohol consumption, exercise, and management of pre-existing heart disease or diabetes (Livingston et al, 2020). There are two key points where dementia prevention can be communicated (1) in primary care by General Practitioners (GP’s), and (2) in secondary care with adults diagnosed with Mild Cognitive Impairment (MCI) or Functional Cognitive Disorder (FCD), but not yet dementia. There is currently little evidence about if, when and how Brain Health, dementia risk and risk modifying behaviours are communicated to patients by healthcare professionals.

Aims of the study

This exploratory research aims to better understand if, when and how Brain Health is promoted in clinical communication, in particular exploring if and how dementia risk and prevention are discussed with patients. Our specific objectives are to:

  1. Explore the role of primary care practitioners in the primary prevention of dementia.  We seek to enquire if, when and how General practitioner’s (GP’s) promote Brain Health, discuss dementia risk and risk reduction with patients in primary practice.
  2. Explore if and how specialist clinicians communicate dementia risk and risk reduction in memory clinic encounters when patients are diagnosed with Mild Cognitive Impairment or Functional Cognitive Disorder.
  3. Discover if there is a clinical consensus on the importance of discussing Brain Health, dementia risk and risk reduction, and when and how best to do so?

Methods:

This study consists of two work packages (WP)

WP1: (Q1 and 3) Focus groups/interviews will be conducted with GP’s. Data will be transcribed and analysed using thematic analysis.

WP2: This will involve secondary analysis of video recordings of diagnosis feedback meetings across nine UK-based secondary care memory clinics, from the NIHR ShareD study: “Shared decision making in mild to moderate dementia” (see - https://fundingawards.nihr.ac.uk/award/PB-PG-1111-26063). The data consists of a sample of 41 recordings of individuals diagnosed with MCI which will be screened for communication about dementia risk, risk modifying behaviours and promotion of Brain Health. Data will be transcribed, and Conversation analysis (CA) will be used to analyse the data to enable description of the communication practices clinicians use (Q2)(for a summary of CA see Sidnell, 2010). It is a proven method suitable for exploring clinical communication in memory services (Dooley, et al 2019).

Results: 

WP1: Semi-structured online interviews with 11 UK GPs explored their views regarding their role in dementia prevention. GPs reported that they never explicitly discuss dementia risk with patients, even when patients are presenting with risk factors, but acknowledge that dementia prevention should be part of their role. They advocate for adopting a whole team approach to primary care preventative practice, using long-term condition reviews or annual health checks as a platform to enable dementia risk communication targeting already at-risk individuals. Barriers included a lack of time, an absence of knowledge and education about the modifiable dementia risk factors, as well as a reluctance to use dementia as a term within the appointment for fear of causing health anxiety. Brain Health was perceived as offering a more encouraging discursive tool for primary care practitioners, supporting communication and behaviour change.

WP1 Outputs:

Jones D, Drewery R, Windle K, Humphrey S, de Paiva AF. (2023) Dementia prevention and the GP's role: a qualitative interview study. British Journal of General Practice. DOI: https://doi.org/10.3399/BJGP.2023.0103

De Paiva, A., Drewery, R., Windle, K., Humphrey, S., Jones, D., (2023) Brain Health and the prevention of dementia: the General practitioners' role. Oral presentation at Alzheimer Europe Conference, Helsinki, October 2023

Jones, D. (2023) Communicating the risk of dementia. Presentation at INTERDEM Taskforce on Dementia Prevention. Online, 09 March 2023

WP2: 41 recordings of MCI diagnostic feedback meetings, recorded in UK-based psychiatry-led memory clinics, were analysed using Conversation Analysis. We identified that risk communication is present in 39 of the 41 consultations. We identified three key and recurring types of clinical risk communication which, employing the terminology of risk discourse, we will term 1, risk identification; 2, risk characterisation; and 3, risk management (or mitigation). Risk identification typically occurs early in the consultation, before diagnosis, where clinicians work to identify, expose and negotiate a shared understanding of the patient’s existing risk factors, and risky health behaviours, which could contribute to the patient’s cognitive difficulties. Risk characterisation relates to the way the clinician’s estimate the probability of the patient’s future risk of dementia, and risk management identified strategies to mitigate this risk. Risk management often topicalises issues raised earlier in the consultation during the process of identifying potential risks, or if no risk factor was identified, clinicians offer general and vague strategies for risk reduction. Strategies for the mitigation of future risks are often resisted by the patients.

WP2 Outputs:

Jones, D., Drewery, R., Windle, K., McCabe, R., Dooley, J., De Paiva, A. (frth) Communicating the risk of dementia in memory clinics. Manuscript in progress.

Jones, D., Drewery, R., Windle, K., McCabe, R., Dooley, J., De Paiva, A. (2023) Communicating the risk of dementia in memory clinics: a conversation analytic perspective. Quick oral presentation at Alzheimer Europe Conference, Helsinki, October 2023.

Jones, D (2022) Preventing dementia by communicating risk. Presentation at Loughborough Dementia Symposium, Loughborough UK, 2022.

 

Collaborators/ Researchers:

Principle Investigator: Dr Danielle Jones, Associate Professor in Dementia Studies, Centre for Applied Dementia Studies, University of Bradford - https://www.bradford.ac.uk/staff/dkjones1

 

Collaborators:

Dr Karen Windle, Centre for Applied Dementia Studies, University of Bradford

Professor Rose McCabe – City University, London

Dr Jemima Dooley – Exeter University

 

Funding

SURE funding – University of Bradford