Investigating the use of advance care planning for deprescribing preventive medication in dementia: a mixed methods study

Background People over the age of 65 have a one in three chance of developing dementia. When first diagnosed with dementia, over 80% of people will be taking three or more medications for other illnesses. There is limited evidence to show whether the benefits of taking preventive medication as you age outweigh the risks, as clinical trials are rarely conducted in older people, and the complexity of comorbidity and drug interactions are not fully understood. It is often considered that as dementia advances, quality of life becomes poorer, as there is a loss of independence, with mental and physical deterioration. The use of ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) forms now enables family members of people living with dementia to consider whether they think the person with dementia would want to be resuscitated or be admitted to a hospital. However, ReSPECT forms are not currently used to deprescribe preventive medication. Everyone with mental capacity has the right to refuse life-sustaining treatment, and therefore, wishes about preventive medication could be written in an advance care plan, but this is rarely done. Research Question How can advance care planning be used for deprescribing preventive medication in dementia? Aims and Objectives To collate all the evidence of deprescribing in dementia related to advance care planning. To establish the proportion of people wanting to deprescribe preventive medication if they were to develop dementia and at what stage of dementia (using case vignettes). To explore the barriers and facilitators of advance care planning regarding deprescribing in preventive medication. To make recommendations on how to enable the use of advance care planning to deprescribe preventive medication for those who wish to. Methods and timelines for delivery This will be a mixed methods study using an explanatory sequential design. It will be supported by an advisory group of PPI members, healthcare practitioners and academics. Year 1: A scoping review to find any evidence regarding advance care planning that incorporates deprescribing. This will inform the cross-sectional survey to determine how many people would wish to deprescribe preventive medication in dementia using advance care planning. Year 2: Interviews with up to 25 members of a diverse group of the general public to explore a deeper understanding of this topic and the practicalities of implementation. Interviews with up to 25 healthcare professionals to understand their views on acting on these decisions. Year 3: Culminating all the research evidence of the study at a one-day event using the World Café method. We will develop guidelines for both practitioners and members of the public, considering the implications for practice. We will also consider the next steps in this programme of work. Anticipated impact and dissemination Three publications in peer-reviewed open-access journals. Presentation at three conferences, including the Alzheimer's Association International Conference. Guidance for the public and guidance for healthcare professionals. The research will be disseminated to the lay media and social media, and an article will be proposed for The Conversation.