Dementia Diagnosis Video Analysis
Research type
Research Study
Full title
Diagnosis disclosure in dementia: An observational study
IRAS ID
268366
Contact name
Jennifer Yates
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
1 years, 3 months, 9 days
Research summary
Receiving a dementia diagnosis is pivotal in the dementia journey, setting the tone for future interactions with clinicians (Sakai & Carpenter, 2011). Research suggests dissatisfaction with the diagnostic experience from the perspectives of healthcare professionals, patients, and their carers (Robinson, Clare, & Evans, 2005) and a best practice model for this socially complex procedure is currently lacking (Lecouturier et al., 2008). Diagnosis is necessary to access treatment to improve quality of life, promote independence, and reduce carer strain (Fisk, Beattie, Donnelly, Byszewski, & Molnar, 2007) , yet healthcare professionals have identified the diagnostic process as one of the five most difficult aspects of dementia care (Rae, McIntosh & Colles, 2001).
Clinicians emphasise the importance of using a patient centred-approach (Robinson et al., 2011), aiming to strike a balance between the communicative needs of both patients and carers (Dooley, Bailey, & McCabe, 2015). The success of the diagnostic process can depend on factors including whether the patient and carer have already begun to adjust to the diagnosis or whether the interview marks the beginning of adjustment (Bunn et al., 2012). Previous research has begun to establish best practice by agreeing on a list of best practice behaviours (Lecouturier et al., 2008) but this list has not subsequently been validated in a wider sample of healthcare professionals or a UK context (Werner, Karnieli-Miller, & Eidelman, 2013).
Our research team have recently completed an update to this list of best practice behaviours by undertaking an updated systematic review, with over 70 different disclosure behaviours identified. The extent to which these behaviours actually occur in practice though is unknown. An observational methodology will enable our research team to determine the extent to which these behaviours occur, and how they contribute to the dynamics of the disclosure. This information may be used in future to develop training materials for clinicians who are new to this role, and to help clinicians critically reflect on their own practices.REC name
North of Scotland Research Ethics Committee 2
REC reference
19/NS/0140
Date of REC Opinion
12 Aug 2019
REC opinion
Further Information Favourable Opinion