Understanding and improving end of life care for people with dementia and their carers

Research project: Understanding and improving support to help people with dementia and their carers prepare for advanced illness and end of life: a development study

  • Lead Investigator: Professor Martin Knapp
  • Institution: London School of Economics and Political Science
  • Grant type: Project 
  • Duration: 36 months
  • Amount: £241,238

Why did we fund this research? 

Comments from our Research Network

'I think this is an excellent proposal to examine what, in my personal experience, is a painful yet virtually taboo'd topic. The more we know about this area, and the more we are able to prepare and support people with dementia and their loved ones through it, the better.'

What do we already know? 

Dementia is the leading cause of death in England and Wales. Unfortunately there is very limited research into the needs and experiences of both carers and those with the condition at the advanced stages of the condition and at end of life. 

What does this project involve? 

Professor Knapp and his team aim to understand more about how planning towards the end of life could support people affected by dementia.

The researchers will be investigating how people with dementia and their carers:

  • prepare for advanced illness and end of life
  • the factors that influence their preparation
  • the kinds of support they receive and find most helpful
  • the difference that preparing makes to their experiences at end of life.

The team will be collecting information using data already available from a large study of 1,500 people with dementia and their carers. Additionally they will carry out in depth interviews with 50 carers and up to 30 people living with dementia. Lastly they will aim to learn about the experiences of carers who have lost a loved one to dementia through a postal survey.

How will this project help people with dementia?

This project will give a unique insight into the experiences of carers and their loved one at a very difficult time. It’s important we understand the needs of both carers and people with dementia to ensure we provide the best and most appropriate support during the advanced stages of dementia and at the end of life. 

This study will broaden our understanding of the needs of people affected by dementia and highlight areas of care and support that need to be provided or improved upon.