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

There are around 750,000 people with dementia in England (7.2% of the population aged 65 and over) two-thirds of whom live in the community outside care homes. They are at high risk of serious outcomes from COVID-19 and in many cases their family carers, most frequently their spouse, are also at similarly high risks due to age and comorbidities. People with dementia may 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 have little evidence on how lockdown is affecting community dwelling people with dementia and their family carers with different demographic and socio-economic characteristics. Impacts will differ between those with co-resident (where the carer lives with the person with dementia) and non-coresident carers. Resource mobilisation to acute care in the NHS and social care means that there are reductions/changes in post-diagnostic support and homecare, this project will investigate how these changes are affecting life under lockdown for those with dementia and their carers as a whole and particular populations. The combination of vulnerability to the virus together with reductions in services and the potential exacerbation of dementia symptoms from isolation and lack of occupation makes people living with dementia at home a unique group and as yet we know very little about how they are being affected or what influences this. We will fill this evidence gap by following up a deeply characterised sample of people with dementia and carers who were assessed in the months before the lockdown as part of the DETERMIND programme which focussed on equality and equity of care and outcomes in those diagnosed with dementia. We will examine 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.