Dementia representations: How people with dementia understand the condition

IDEAL Programme

A webinar exploring research on dementia representations and the difference this makes to people with dementia and carers.

This is a free online event via Zoom. We will start at five past eleven (11:05) and end at five to (11:55) to allow people to get between different events. We are the<a href="https://www.idealproject.org.uk/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer"> IDEAL dementia research programme</a>, and have our main base at the University of Exeter.In this sixth session of the IDEAL Webinar Series, we discuss dementia representations. With over 900,000 people known to be living with dementia in the UK, and significant rises anticipated, dementia is a pressing health concern . How, though, do people with dementia understand the condition, and why does this make a difference? How people think about a condition changes their behaviour around it from public acts (i.e. whether or not they will seek a diagnosis), through to private motivations (i.e. whether they will share with family members if and when they are finding things hard).Some of the most exciting results coming out of the IDEAL cohort study concern how people with dementia and carers see dementia, and the impact this has on them. Following the logic of ‘illness representations’, we call these mental models of dementia ‘dementia representations’. RADIX (produced by Clare et al) provides a means of measuring dementia representations. While this research focuses on how people affected by dementia understand dementia, we also discuss what it might tell us about public (prototype) representations.In this session you will hear from:<ul><li>Professor Linda Clare, Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter and Chief Investigator on the IDEAL programme.</li><li>Allison and Jane, both members of the ALWAYs group of people with dementia and carers will share their perspectives on this topic. </li></ul>You'll also have the opportunity to ask questions! We intend to have 30 minutes of presentation and 20 minutes of Q&A.We will record the session to allow others to watch it afterwards. However, we will edit out questions if you don't want to be seen. One survey will be sent out after the event after which we will delete your contact information. If you would prefer to book without registering on Eventbrite, please email IDEAL@exeter.ac.uk. Below is a video where people with dementia express what they would like people to know about dementia: do these match what you know about dementia?

The major publications relating to this research are as follows:Harman, G., &amp; Clare, L. (2006). Illness representations and lived experience in early-stage 
dementia. Qualitative Health Research, 16, 484-502. DOI: <a href="https://journals.sagepub.com/doi/10.1177/1049732306286851" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">10.1177/1049732306286851</a>
Clare, L., Goater, T., &amp; Woods, R.T. (2006). Illness representations in early-stage dementia: 
a preliminary investigation. International Journal of Geriatric Psychiatry, 21, 761-767. DOI: <a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/gps.1558" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">10.1002/gps.1558</a>
Quinn, C., Morris, R.G., &amp; Clare, L. (2018) Beliefs about dementia: development and 
validation of the Representations and Adjustment to Dementia Index (RADIX). American Journal of Geriatric Psychiatry, 26, 680-689. DOI: <a href="https://www.sciencedirect.com/science/article/pii/S1064748118302434" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">10.1016/j.jagp.2018.02.004 </a>
Quinn, C., Jones, I.R., Martyr, A., Nelis, S.M., Morris, R.G., &amp; Clare, L., on behalf of the IDEAL 
study team. (2019). Caregivers’ beliefs about dementia: findings from the IDEAL study. Psychology and Health. DOI: <a href="https://www.tandfonline.com/doi/full/10.1080/08870446.2019.1597098" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">10.1080/08870446.2019.1597098 </a>
Clare, L., Gamble, L.D., Martyr, A., Quinn, C., Litherland, R., Morris, R.G., Jones, I.R., &amp; 
Matthews, F.E. (2022). Psychological processes in adapting to dementia: illness representations among the IDEAL cohort. Psychology and Aging, 37(4), 524-541. DOI: <a href="https://psycnet.apa.org/fulltext/2022-11849-001.html" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">10.1037/pag0000650 </a>

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Dementia representations: How people with dementia understand the condition

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