Grant: Operating Grant: Joint Programme on Neurodegenerative Disease Research (JPND)

Dementia is increasing across the world. The effect of the disease on families, caregivers and communities is an important global public health challenge. Family carers of dementia patients often make end-of-life decisions for their family members. But, they do not know if these decisions are what their family member would want. Also, staff at care homes do not have the skills and information to speak with family members about end-of-life care decisions. Both of these experiences can put the person living with dementia at-risk for care that they would not want. This project will try to reduce the uncertainty towards end-of-life decision making. It will do this by using a tool called the Family Carer Decision Support (FCDS) intervention. The tool will tell family members about the options for end-of-life care for a person living with advanced dementia. This tool has been used in a study in Northern Ireland. In Northern Ireland, it helped families to make decisions about goals of care at the end-of-life. When this tool was used, family members were happier with the care given to their family member. The goal of this study is to use the tool in homes within different countries and determine if it is helpful for family members to make decisions. When the tool is used in different countries, it will encourage the use of the tool across the world. It will also encourage families to make end-of-life care decisions. This new information about the tool will also help set-up guidelines for the tool's use.