Effective communication of pharmaceutical treatment uncertainty in Memory Assessment Services; exploring how treatment uncertainty communication influences patient decision making, optimising communication and intervention priorities

Award Number
Research for Patient Benefit
Status / Stage
4 January 2021 -
4 July 2022
Duration (calculated)
01 years 06 months
Funding Amount
Funder/Grant study page
Contracted Centre
Leeds and York Partnership NHS Foundation Trust
Principal Investigator
Dr Sarah Jane Smith
WHO Catergories
Methodologies and approaches for risk reduction research
Tools and methodologies for interventions
Disease Type
Dementia (Unspecified)

CPEC Review Info
Reference ID127
ResearcherReside Team


Award NumberNIHR201560
Status / StageCompleted
Start Date20210104
End Date20220704
Duration (calculated) 01 years 06 months
Funder/Grant study pageNIHR
Contracted CentreLeeds and York Partnership NHS Foundation Trust
Funding Amount£149,945.00


Receiving a dementia diagnosis is emotionally challenging, particularly due to the impact of the diagnosis and the lack of curative treatments. Within Memory Assessment Services (MAS), providing good quality information reduces uncertainty and facilitates shared treatment decision-making. However, communication of treatment in MAS is known to generate anxiety and reluctance to start medication. The way in which medications and their benefits and risks are described influences patient satisfaction and decisions to take them.This will deliver recommendations for optimal treatment communication, informing future substantive studies for improving MAS treatment communication practices. This study will: 1. investigate perceptions of risk and benefit and attitudes toward the communication of treatment uncertainty among clinicians, people with dementia, and their families. 2. investigate the experience of and reaction to situations of treatment uncertainty among people with dementia and their families. 3. investigate the impact of differences in the way in which treatment uncertainty is explained to people with dementia, and their families, on understanding, decisional uncertainty and intention to take medication. 4. investigate which modes of communicating treatment uncertainty reduce decisional uncertainty and optimise understanding, 5. use these findings to develop recommendations for communicating the benefits and risks of dementia medications in order to support informed decision making, and inform evidence-based interventions for improved communication in MAS. Methods: The proposed study consists of three inter-related workstreams (WS). Workstream 1 (WS1) will recruit 40 people for video-based observations of MAS appointments. Multi-textural thematic framework analysis of triadic/dyadic communication will be conducted. Follow-up interviews will ascertain any impact(s) of the appointment. Workstream 2 (WS2) will conduct a survey through Join Dementia Research addressing the types of communication that optimise patient involved in treatment decision-making. Two samples will be recruited; (1) 110 adults aged 50+ without dementia, and (2) 110 adults aged 50+ with dementia. Hypothetical vignettes (developed from WS1 data) will be presented to participants, outlining different ways of communicating treatment uncertainty. Regression analysis and correlations will determine which method of communication has the greatest impact on decisional conflict. Further analyses will establish the strength of the relationship between the four communication approaches and secondary outcomes. Workstream 3 (WS3) will bring together clinicians, patients and relatives for a workshop to draw together findings from WS1 & WS2 and generate recommendations to optimise communication around medications in MAS and inform future evidence-based interventions, using the RE_AIM framework. Anticipated impact and dissemination: Service delivery impact is anticipated for local and national NHS organisations through development of recommendations for clinicians for communicating the benefits and risks of dementia medications, and provision of patient information to facilitate informed decision-making; these can be implemented immediately in participating MAS and disseminated further. The consensus impact statement will inform future research, most likely a feasibility study to establish the impact of adopting enhanced approaches to communicating treatment uncertainty in MAS.


This study aims to understand the way medications are described to people with dementia in MAS, and the impact of this on patient decision-making, the medications they take and satisfaction