Study title

England and Wales

Individual

INCLUDE added a COVID-19-specific data-collection module to the nationwide IDEAL-2 study. INCLUDE participants were people with dementia and carers who took part in IDEAL and IDEAL-2. All participants who took part during IDEAL data collection timepoint 3 or who had taken part in IDEAL-2 timepoint 4 were contacted. In total, 624 eligible people with dementia and 584 eligible carers were identified. Of these, 109 people with dementia and 88 carers could not be contacted. Of the remaining 515 people with dementia and 496 carers, 343 people with dementia and 208 carers did not participate. In total, 173 people with dementia and 288 carers took part in INCLUDE. One person with dementia was subsequently removed from the dataset after being rediagnosed with a different condition. The final number of participants with dementia was therefore 172. There were no specific inclusion criteria as all participants were already taking part in the IDEAL programme; however, people with dementia were excluded if they lacked capacity to provide informed consent. No new participants were recruited into the study, except that in five cases a different family carer replaced the carer who had previously contributed. People with dementia could take part if there was no carer taking part, and carers could take part if the care recipient was no longer willing or no longer able to take part. 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.All interviews were conducted remotely due to COVID-19 restrictions. All participants completed the structured interviews, and 36 participants (19 people with dementia and 17 carers) also completed in-depth semi-structured interviews. The structured interviews included brief measures and items from validated scales used in the IDEAL study, and bespoke questions focusing on experiences during the pandemic, and some additional open-ended questions offering opportunities to expand on specific responses. For the semi-structured interviews, a topic guide was prepared based on questions and prompts that were open-ended to allow for flexibility to reflect on different experiences. Detailed information about the INCLUDE sample characteristics for the structured and semi-structured interviews can be found in the User Guide. A list of measures, interview schedules, and surveys can be found in the Data and Interview documents.