Title: Effective communication of pharmaceutical treatment uncertainty in Memory Assessment Services; exploring how treatment uncertainty communication influences patient decision making, optimising communication and intervention priorities
Funder: Department of Health and Social Care

Abstract: Background: 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. Research Aims: 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. 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.

Lay abstract: Each year in the UK 225,000 people will develop dementia. When people are concerned about having dementia they attend Memory Assessment Services. One of the main reasons people give for wanting to find out if they have dementia is to access medications, which are offered to around 70% of people diagnosed. However, sometimes people have unrealistic expectations about how good the treatment might be. Sometimes people are worried about starting a medication once it is prescribed. Discussing treatments can be stressful because medicines do not cure dementia and do not work in the same way for everyone. Describing how effective treatments are and the side effects they have involves uncertainty. Currently we do not know how healthcare professionals talk about the effectiveness and side effects of medications for dementia. In memory assessment services conversations are further complicated because the person with dementia may find it harder to understand information. Sometimes this means they are not involved in the conversation or professionals over simplify the information which leads to further confusion. It is very important that people are given the right information so that they can make an informed decision about whether to take the medication. This study aims to understanding how medications are described to people with dementia in memory assessment services. The study will see how that affects peoples understanding of the treatment and decision to take the medication. This will be done through three workstreams (WSs). WS1 will examine how medications are talked about in appointments by video recording conversations between medical professionals and people receiving a diagnosis. These will be analysed to understand the focus of conversations. Follow up interviews will be conducted to understand the impact of the appointment on newly diagnosed individuals. WS2 will use a large survey of older people to understand how presenting information about medications in different ways changes peoples decisions about taking a medication. We will use made up scenarios in which people are prescribed medications to give examples of how healthcare professionals talk about medications when they prescribe it. Participants will be asked to rate how well they understand and trust the information, and how likely they would be to take the medication if it was described in this way. WS3 brings together the findings of WS1 and WS2 in a workshop of people living with dementia and their family members to reach agreement on how healthcare professionals should talk about medications to improve outcomes for people with dementia. This workshop will allow us to provide recommendations for medical professionals delivering diagnosis and individuals receiving a diagnosis. PPI involvement in all elements of the study will help develop accessible resources for NHS Trusts, support groups, and dementia specific charities.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL