Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life under Physical Distancing on People with Dementia and Carers, 2020-2022

INCLUDE was a mixed-methods cross-sectional observational study embedded in, and forming a discrete component of, the ongoing longitudinal ‘Improving the experience of Dementia and Enhancing Active Life’ (IDEAL) cohort. INCLUDE comprised 172 people with dementia and 288 carers living in England and Wales. People with dementia residing in care homes could not be contacted to take part so only community dwelling people with dementia took part in INCLUDE. Interviews with people with dementia were carried out over the telephone or via videoconference. All responses were recorded by researchers using an online survey designed in Qualtrics. Carers were either interviewed in a similar way or self-completed an online form in their own time. Data were stored in Qualtrics. Structured assessments with all participants were conducted remotely due to COVID-19 restrictions between September 21, 2020, and April 30, 2021. For people with dementia, interviews began with questions about health and healthcare during the pandemic, and subsequent sections covered perceptions of social connection and relationships, psychological health, ability to manage everyday life during the period, and overall perceptions of the capability to ‘live well.’ Carers were asked to provide informant reports and describe their own experiences. The questions for carers covered health, social networks, psychological well-being, and caregiving experiences. In addition, people with dementia and carers who were both willing and able to participate in a semi-structured interview were identified, and interviews were conducted remotely between November 2020 and January 2022. Three sets of interviews were conducted, totalling 51 interviews. In the first set, eighteen interviews were conducted representing 21 participants: 8 were with people with dementia, 7 were with carers and 3 were joint interviews, i.e., the person with dementia and carer were interviewed together. In the second set, fourteen interviews were conducted representing 15 participants: 7 with people with dementia, 6 with carers, and 1 joint interview. For the third set, participants had previously been interviewed either for one of the two sets of INCLUDE in-depth interviews or for an earlier IDEAL sub-study conducted at the start of the pandemic, the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI). In the third set, nineteen interviews were conducted: 9 with people with dementia and 10 with carers. Of the people with dementia interviewed in this third set, 6 participants were from INCLUDE set 1 interviews, 2 from INCLUDE set 2 interviews and 1 from IDEAL-CDI. Of the carers interviewed in this third set, 6 participants were from INCLUDE set 1 interviews, 3 from INCLUDE set 2 interviews and 1 from IDEAL-CDI. It must be noted that the IDEAL-CDI interviews are not archived, and the data is not currently available.