Supported by Dementia UK and Alzheimer’s Society, and developed with people affected by dementia, the ENDEMIC (dEmeNtia and DEcision MakIng during Covid19) research team at UCL have produced a decision-making guide for carers so they can ensure their loved one with dementia gets care, support and dignity if they catch COVID-19.
Dementia is the most common underlying condition in people who die with COVID-19 (a quarter of COVID-19 deaths have been people living with dementia). People with dementia and COVID-19 often experience a sudden deterioration and respiratory failure, and the nature of dementia also means that many people with the disease lack the capacity to make their own care choices.
During the pandemic, researchers have observed the challenges to carers who can’t be with their loved one in person due to visiting restrictions and having to social distance or shield themselves. This often means that they have had to make quick decisions over the phone with a healthcare professional they have never met about the care and interventions their loved one receives.