5. Investigate how people with dementia and their carers plan and make-decisions.

Led by: University of Sussex

Aims: We will look in detail at the ways people with dementia and their carers plan their care, make decisions and what they think about when making those decisions.


Workstream 5 (WS5) will look at how people with dementia and their carers plan and make decisions. The aim of this work is to find a way to support people with dementia and their carers to make the right decisions for them with the information they have available to them. We will aim to answer questions about the connection between decision-making and people’s abilities to reflect on and control their emotions and impulses. We will look at whether people’s backgrounds (age, ethnicity etc.) make a difference to this.

WS5 will answer these questions using both quantitative (numbers or numerical data) and qualitative (data that is not numerical e.g. interviews) methods.

We will use quantitative analyses to look at differences in people’s ability to make decisions and how this impacts on their

  • Physical and mental wellbeing,
  • Quality of life,
  • Service use and the costs of the services,

To get a better understanding of how people make decisions, we will interview people about their experiences of making major decisions for example making advance directives (also known as a ‘living will’; a legal document which says what you would like to happen when you no longer have the ability to make decisions), going into residential care, or giving up work.

Through this work we will collect evidence that will allow us to find the best ways to help and support people with dementia and their carers.

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