Investigating burdensome end of life care in people with advanced dementia

Find out about our research to tackle issues facing people with advanced dementia and their carers and how we can support them to get the best care. 

Lead Investigator:  Dr Elizabeth Dzeng

  • Institution: King’s College London, University of California and France.
  • Grant type: GBHI pilot grant
  • Duration: 12 months
  • Amount: £19,000

Summary of the research project 

The aim of end of life care is to make the person as comfortable as possible in a respectful and dignified way. Yet, some medical interventions can increase the suffering of the person without extending lifespan, these are called burdensome care.

Dr Elizabeth Dzeng’s will investigate the causes of this burdensome care, the barriers that people face in advocating for the best care and how changes can be made to tackle these issues.

What do we already know?

People with advanced dementia are often subjected to burdensome end of life treatments that go against the person’s wishes, reduce quality of life and result in excessive suffering with no chance of extending life. This can include breathing tubes, resuscitation, invasive tests and surgical procedures. These burdensome treatments can also have a negative emotional, financial and mental impact on carers and can result in depression or post-traumatic stress disorder.

The issue of burdensome care disproportionately affects people from disadvantaged social backgrounds, non-native English speakers and those who come from a different cultural background among others. People from these groups are more likely to face barriers to being able to advocate for the best care.

What does the project involve?

The goal of this research is to encourage medical and social change, enhance understanding and promote dignity and empowerment for older adults with dementia. Dr Dzeng aims to identify the factors that lead to people affected by dementia receiving burdensome end of life treatment and aims to change medical attitudes to care and support people affected by dementia in choosing the right care.

This project will uncover the cultural factors as well as issues in the medical system that contributes to people receiving burdensome care.

Dr Dzeng is an assistant professor of hospital medicine at University of California, San Francisco who specialises in the area of palliative or end of life care, dementia, sociology and ethics. In this project Dr Dzeng will look at the factors that lead to people with dementia receiving burdensome care in the UK, US and France.

She will gather information by interviewing staff members in six hospitals in total, two each in the UK, France and US. By using coding methods to analyse this information she will build a reliable bank of information on this topic for each country. By comparing between countries she will discover whether there are successful methods that could be applied to other hospitals in other countries to successfully reduce burdensome care.

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How will this project help people with dementia?

The findings of this work will be used to design an intervention to change medical culture and reduce burdensome care and its negative impact on people with dementia and their families. Dr Dzeng aims to encourage social change, enhance understanding and promote dignity and empowerment for older adults with dementia.

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