DETERMIND-C19: Impact of COVID-19 on people newly diagnosed with dementia and their family carers, a mixed method study nested in DETERMIND

People with dementia are at high risk of adverse outcomes from COVID-19 and may also be adversely affected by the steps taken by society to control the spread of the infection. They have difficulty remembering and understanding restrictions and precautions put in place to protect them and others, and may be distressed that non-resident family and social networks are compromised. In addition, there is currently reduced access to many formal care services. This may cause strain for people with dementia and co-resident and non-co-resident family carers, particularly those with a recent diagnosis who are attempting to come to terms with living with dementia and navigating the complex support landscape. We currently have few empirical data with which to help us to formulate how best to support them. We will address this gap by examining how a group of 266 people newly diagnosed with a range of severities of dementia in the months before the COVID-19 lockdown and their carers have been affected by COVID-19 and the predictors of better and worse outcomes (quality of life, depression, carer burden and physical health). They were recruited as part of the ESRC/NIHR-funded DETERMIND programme and have a rich baseline characterisation of socio-demographics, clinical state, and service use. Using telephone quantitative and qualitative interviews we will investigate what has happened to them and how outcomes vary by clinical and sociodemographic factors such as dementia severity, neuropsychiatric symptoms, service receipt, ethnicity, gender, and place of residence. We will use these data to generate practical guidance for services and families on how best to support people with dementia and carers in this and any future pandemic.