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The INCLUDE project

The INCLUDE study aimed to understand the impact of the COVID-19 epidemic and the resulting restrictions on people with dementia and their carers, and to develop a toolkit to address the negative and potentially harmful effects of this situation. This encompasses resources for people with dementia and carers, and guidance for health and social care professionals and volunteers working with people affected by dementia

We invited people with dementia and carers that were taking part in the 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) programme to take part in INCLUDE. IDEAL followed a large group of people with dementia and carers between 2014 to 2022 to understand what makes it possible for people to 'live well' with the condition. 

The INCLUDE study added a new data collection module to the IDEAL programme. This was specifically designed to examine the impact of the COVID-19 epidemic and resulting restrictions. Participants completed questionnaires and respond to open-ended questions in a structured interview, and a small sub-set undertook conversational semi-structured interviews about their experiences. People with dementia and carers were involved in developing the interview schedules.

172 people with dementia and 299 carers completed the structured interview. 19 people with dementia and 17 carers completed the semi-structured interviews. Some participants were interviewed more than once as the COVID-19 pandemic changed; there were 51 interviews in total.

The information that INCLUDE participants provided enabled us to understand how COVID-19 affected people with dementia and carers as a whole and how the impact differs for particular sub-groups, for example based on age, type of dementia, or socioeconomic status. 

Because we already have a good deal of information about IDEAL participants we were able to link their responses with information they provided previously. This allowed us to identify the impact of COVID-19 on trajectories of symptoms and well-being.

Working together with people with dementia and carers, we used the evidence gained to develop the living with dementia toolkit, a set of resources to support social, mental and physical health and relationships for people with dementia and carers, and provide guidance for health, social care and voluntary sector staff.

Outcomes:

Clare, L., Martyr, A., Gamble, L.D., Pentecost, C., Collins, R., Dawson, E., Hunt, A., Parker, S., Allan, L., Burns, A., Hillman, A., Litherland, R., Quinn, C., Matthews, F.E., & Victor, C. (2022). Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohortJournal of Alzheimer's Disease85(2), 925-940. https://doi.org/10.3233/JAD-215095 click here to read an accessible summary‌

Gamble, L.D., Parker, S., Quinn, C., Bennett, H.Q., Martyr, A., Sabatini, S., Pentecost, C., Collins, R., Dawson, E., Hunt, A., Allan, L., Burns, A., Litherland, R., Victor, C., Matthews, F.E., & Clare, L. (2022). A comparison of well-being of carers of people with dementia and their ability to manage before and during the COVID-19 pandemic: findings from the IDEAL studyJournal of Alzheimer’s Disease88(2), 679-692. https://doi.org/10.3233/JAD-220221 click here to read an accessible summary‌

Quinn, C., Gamble, L.D., Parker, S., Martyr, A., Collins, R., Victor, C., Dawson, E., Hunt, A., Pentecost, C., Allan, L., & Clare, L. (2022). Impact of COVID-19 on carers of people with dementia in the community: Findings from the British IDEAL cohortInternational Journal of Geriatric Psychiatry37(5). https://doi.org/10.1002/gps.5708 (open access) click here to read an accessible summary‌

Sabatini, S., Bennett, H.Q., Martyr, A., Collins, R., Gamble, L.D., Matthews, F.E., Pentecost, C., Dawson, E., Hunt, A., Parker, S., Allan, L., Burns, A., Litherland, R., Quinn, C., & Clare, L. (2022). Minimal impact of COVID-19 on the mental health and well-being of people living with dementia: analysis on matched longitudinal data from the IDEAL studyFrontiers in Psychiatry13(1), 849808. https://doi.org/10.3389/fpsyt.2022.849808 (open access) click here to read an accessible summary‌

Stapley, S., Pentecost, C., Collins, R., Quinn, C., Dawson, E., Morris, R. G., Sabatini, S., Thom, J. M., & Clare, L. (2023). Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohortAgeing & Society. Advance online publication. https://doi.org/10.1017/10.1017/S0144686X22001350 (open access) click here to read an accessible summary‚ÄĆ

What is the INCLUDE project?

Hear those involved in INCLUDE introduce the project, and explain what it means to them.