Developing a tool to support diagnostic delivery of dementia

Current political drivers are set to increase the volume of people receiving a dementia diagnosis. However, there are problems with how diagnoses are being delivered, with people reporting it to be confusing, anxiety provoking, and being generally dissatisfied. Limited guidance exists that could hel...

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Bibliographic Details
Main Author: Bennett, Claire
Published: University of Nottingham 2018
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Online Access:https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.740704
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Summary:Current political drivers are set to increase the volume of people receiving a dementia diagnosis. However, there are problems with how diagnoses are being delivered, with people reporting it to be confusing, anxiety provoking, and being generally dissatisfied. Limited guidance exists that could help improve the delivery and steps are required to address this. Research has begun to explore the components of a good delivery of a diagnosis of dementia, however interventions to support clinicians to deliver diagnoses are limited. This project’s overarching aim was to develop a prototype tool that has future potential to be used by clinicians, patients, and companions who are involved in the delivery of diagnoses of dementia. A two-phase sequential design was undertaken. Phase one explored four Memory Assessment Service (MAS) clinicians’, five patients’, and five companions’ perspectives of what makes a good delivery of a diagnosis of dementia via 10 semi-structured interviews. Thematic analysis of this data produced four overarching themes relevant to a good delivery of a diagnosis of dementia: overcoming barriers; navigation of multiple journeys; and completing overt and covert tasks. Two paper based tools were devised from these themes. One tool for service deliverers to support reflective practice and skill development; and the other for service recipients. This contained three elements: an information guide containing an overview of MAS appointments and outcomes, introduction to choices, bringing a relative or friend; a notes sheet which supported consideration of main concerns and choices, provision of space to record answers; and a prompt sheet to use during appointments to prompt question asking, and recording information discussed. Phase two assessed the tool’s acceptability across four focused group discussions with seven service deliverers and six service recipients. Thematic analysis was used to explore the preliminary acceptability of the tools, as perceived by the participants, and guided revisions to improve the design of both tools. Overall feedback was positive and both tools were deemed to be acceptable. The tools were modified to remove the prompt sheet and incorporate the principles into the service deliverer’s guide. Some minor adaptations to improve acceptability of phrasing were also made. This project developed a novel tool for supporting clinical practice in the delivery of dementia diagnoses. It also contributes towards the knowledge of dementia diagnosis and provides an alternative narrative of quality diagnostic delivery, rather than diagnostic volume. The tool uniquely articulates clinicians' experiences of diverse and changing emotional responses to the process of diagnosis delivery and of their management of this to prevent impact on the recipient. It is suggested that by mastering these skills clinicians can facilitate cohesion with, rather than distancing from, the attendee’s emotions. It also highlights barriers to good practice and the management of power within diagnostic appointments, both considered to potentially extend previous guidelines. The next steps are to take the tools into further development work and then to evaluate the tools. This may include completing further focus groups to establish acceptability of the tools and contribute to further development. Formal evaluation of quality and usability could include field testing to assess feasibility.