Title: Enhancing Treatment Decisions for People Living with Dementia and Oral Diseases
Funder: Department of Health and Social Care

Abstract: Research QuestionHow can shared and best interest decision-making for dental treatment be effectively facilitated for people living with dementia and oral diseases? Background As people are living longer, more people are living with dementia and are more likely to have missing teeth, dental infections or dental pain. These problems can be harder to manage as dementia progresses. Invasive treatment can be both distressing and associated with post-operative morbidity, while less invasive approaches can fail to manage pain or infection; this makes decision-making with this group highly complex. An increasing number of people will require dental treatment whilst living with dementia; it is essential to support patients, their family/carers and dentists in making these difficult decisions together. Aim To develop and examine the usability of an intervention to help people living with dementia, families/carers and dental teams make shared or best interest decisions about dental treatment provision Methods I will develop and test an intervention to improve decision-making for people living with oral diseases and dementia over three consecutive research phases. I will also conduct a systematic review to explore how to improve decision-making for people living with dementia outside of the dental setting. Phase 1: I will use ethnography, observing dental appointments for up to 20 people living with dementia. I will then complete semi-structured interviews with up to 25 patients/carers, and up to 20 dentists from general and specialist settings. Field notes and interview transcripts will be analysed separately by iterative thematic analysis before being triangulated. Phase 2: Using the Theoretical Domains Framework, I will review the findings from Phase 1 to identify how best to change practice. I will work with a co-production team of stakeholders to develop a prototype intervention to enhance decision-making; the prototype will be refined at workshops with dental teams and patients, family or carers. Phase 3: The intervention designed will be tested for usability. The method of testing will depend on the nature of the intervention. Qualitative methods will be used to explore end users' experience of using or being impacted by the intervention. Normalisation Process Theory will be used to explore how the intervention could be integrated into routine practice. Timelines for delivery (80% FTE) Month 19: Analysis of current practice Month 31: A prototype intervention will be developed and refined Month 41: Completion of usability testing Month 45: An intervention aiming to benefit patients and dental teams will be available to study further Month 45: Completion of Doctoral Thesis Anticipated Impact and Dissemination This project will be the first to work with patients and carers to generate evidence to inform decision-making for people living with dementia and oral diseases. This evidence will help ensure treatment delivery is a result of person-centred decision-making processes. Study results will be disseminated to patient-facing and clinical groups, both informally and formally in presentations and open-access publications with a patient representative/carer as co-presenter and co-author. Collaboration with clinical stakeholders, commissioners and policy-makers will aid dissemination and forge a path for wider implementation and patient benefit.

Lay abstract: Background Most people are now keeping their natural teeth into older age. As people are living longer, more people are living with dementia. People living with dementia (PLwD) often experience dental problems like toothache, decay, infections, missing teeth and problems with chewing. It can be difficult to treat these conditions if someone is unwell or anxious about dental treatment. People with early dementia can make their own decisions about treatment but this can get harder as dementia progresses. When somebody is unable to make their own decisions, healthcare professionals have to work to find out what is thought to be best for the patient. It is important that the right choice about dental treatment is made with or for each PLwD. Research is needed to help patients and dentists to make these difficult decisions. Study Aim To develop and test an approach to help people living with dementia, families/carers and dentists to make decisions together about providing dental treatment. DesignThis project has three phases. Each phase will inform what happens in the next. Phase 1: Understanding what is happening now I will first examine research papers and policy documents to explore what is known about decision-making outside of dentistry for PLwD. I will then visit dental clinics to observe the appointments of up to 20 PLwD. Notes made about these observations will help me understand what does, and does not, work when helping PLwD or their family/carers to make decisions about dental treatment. After this, I will interview up to 25 PLwD and/or their carers about their experiences of making decisions about dental treatment. I will also speak to up to 20 dentists from different settings to see how they plan treatment for PLwD. This will generate ideas for how to improve decision-making for dental care. Phase 2: Figuring out how to improve practice This phase uses 'co-production' where researchers, patients, carers, dentists and other relevant individuals work together to work out how to improve decision-making about dental treatment for PLwD. I will carry out workshops with patient/carer and clinical groups to use their experiences to inform how care is improved. After an initial idea for a change is produced, various groups, including patients and carers, will help me to build on this idea. Phase 3: Testing the interventionThis phase will look at how, and if, the idea from Phase 2 might be used to improve decision-making. The approach to testing will depend on what is designed in Phase 2. It is anticipated that the change designed in Phase 2 will be introduced into a dental setting and that those it affects will be interviewed to understand how or if they think it is suitable or beneficial. Patient Involvement People living with dementia and carers have contributed to the development of this study and informed its focus on decision-making. They have also contributed to the study design and lay summary. Similar individuals will be involved throughout the project by being members of an advisory panel, developing study documents, reviewing study findings and helping to present key findings to patient groups. Outcome The study's findings will be presented to professional and patient groups to influence what is done in dental clinics and how services are designed. A patient representative/carer will be invited to co-present the findings to patient groups and to co-author scientific papers. By the end of the project, I will have designed and tested an approach to improve decision-making for dental treatment in collaboration with patients and dentists. This will inform a future study which will further test the improvement approach and help ensure it benefits patients.

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