Title: Improving triadic decision-making involving people with dementia
Funder: Department of Health and Social Care

Abstract: Everyone has the right to make their own decisions, but people with dementia may find it difficult to express themselves. People living with dementia have to make decisions about money, medical care, and how they want to be looked after. Their thoughts and feelings on their care, living arrangements, and what treatments they want may change, especially when the dementia gets worse. As time goes on, partners and carers may take over making decisions for the person with dementia, instead of helping them make their own choices. We want to look at how people living with dementia are helped to make decisions about their health through the course of their dementia journey. We want to find out the best ways to help them make their own decisions. The results of our study will help both carers and healthcare professionals involve people with dementia in decision making as much as possible. This research is important because we don't know the best way to help people with dementia make decisions. Our team has previously looked at decision making between doctors and people without dementia. Most of these conversations only involved two people, but most people with dementia bring a family member with them to medical appointments. Conversations work differently when there are three people instead of two. We want to look at how the person with dementia is involved when there are three people talking. To do this, we will examine recordings of actual conversations. We will use an approach called Conversation Analysis. This approach looks at the exact words people use, how long it takes them to answer, their tone of voice, and where they are looking when they talk. These details tell us a lot about how people understand each other. Our study has three parts: 1. Examine conversations that have already been recorded. All of these conversations involved three people. Some of them had dementia but some did not. We will look to see if doctors speak differently when a person has dementia compared to when they do not. 2. Make new video recordings in memory clinics. We will ask people with dementia and their family members to let us video record them talking with their doctor. They won’t have to do anything different, and their appointments will be carried out as normal. This will help us see how people with dementia get involved in decisions about their treatment. 3. Ask 10 pairs of people living with dementia and their family members to keep helping us with our research. A researcher would come and video record all their medical appointments with GPs and other health care professionals for two years. This will help us see changes in the way people with dementia make decisions. During the project, we will keep checking that what we are doing will be helpful to people with dementia and their partners. We have asked specific people to help us. They will be part of our research team, and will tell us what people with dementia want to know. They will also help us tell other people with dementia and carers about what we find out. We will write newsletters and send them to GP practices and dementia support groups so other people can learn about our study. We will also make videos and keep a study website up to date with our findings. We will invite the people living with dementia who are on the research team to help us give talks to other people living with dementia, so they can learn about making decisions too.

Lay abstract: Everyone should be offered the chance to participate in decisions about their health. However, little advice is provided on how best to achieve this when a patient’s capacity is reduced. NICE guidance on involving patients in decision making is based on two-party encounters, but people with dementia (PWD) typically bring someone along with them to medical appointments. Most care decisions are therefore made in interactions involving three parties: the PWD, their carer, and a healthcare practitioner (HCP). To produce guidance on how best to involve PWD in decisions about their care, this study will explore two gaps in knowledge: how decisions are made in conversations involving three parties, and how decisions are made when one of the parties has cognitive difficulties. As dementia gets worse, carers may come under increasing pressure to get involved in making decisions or even to take over decision making from a PWD. This is at odds with the increasing emphasis on helping PWD remain independent. Our research is particularly timely as it will describe how HCP can best involve PWD and their carers in decisions, especially as the views of PWD may change as their condition deteriorates. We will identify ways of talking with PWD and their carers that support person-centred care, and take full account of the PWD’s values and preferences. We focus on the following questions: What communication strategies are HCP and carers using to involve PWD in decision making? How do PWD respond to these in the consultation? Our study will apply Conversation Analysis (CA) to existing and new datasets. CA is now recognised as the leading qualitative methodology for investigating doctor-patient communication. This method studies the details of how people speak, and focuses on how they make sense of the things they tell each other as the conversation develops. Because of this attention to the progression of talk, it is better suited than approaches based on coding and counting things people say, as such approaches rarely take account of when and how things were said. To take account of the fact that the best possible communication with PWD will change with their degree of cognitive impairment, our study will separately analyse conversations between HCPs and people with different degrees of dementia. We will also invite a small group of patient-carer pairs to record additional consultations over a period of two years, to enable us to study other changes which may develop in three-party decision-making over time. Changes in the ability of PWD to participate in decisions is likely to affect how HCPs communicate with them and how third parties become involved. This study will help deliver the national policy objective of involving PWD in decisions about their care by developing practical, evidence-based advice for clinicians and carers. Guidance will be packaged into separate online self-directed learning platforms for HCPs and carers including examples of successful and less successful communication strategies, and short videos and leaflets outlining the study findings for carers and PWD. These outputs will ensure the best possible reach of our findings regardless of whether people can use computers or even read, and will be designed to include people from more marginalised groups. The study results will also be spread through professional networks, conferences, and scientific publications.

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