ENDEMIC: dEmeNtia and DEcision MakIng during Covid19

Project Summary

Background: During the current pandemic, if a person living with dementia becomes unwell, the family and the person living with dementia may have to make rapid decisions. Decisions may concern hospital admission or whether to receive care at home, social distancing, and which treatments the person may or may not wish to receive. This can include very difficult decisions such as whether the person wishes to be resuscitated or have other potentially traumatic treatments. These decisions will have an impact on the emotional wellbeing of both the family and person with dementia.

Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions.

Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.

Project Information

Principal Investigators

Dr Nathan Davies and Dr Nuriye Kupeli

Dates: May - August 2020

Funding: ESRC

Research Team

Co-Investigators

• Prof Liz Sampson
• Dr Kirsten Moore
• Dr Emily West
• Pushpa Nair

Collaborators

• Prof Kate Walters
• Prof Greta Rait 
• Prof Jill Manthorpe

Partners: Marie Curie and Alzheimer's Society