Skip to 0 minutes and 5 seconds I feel the arts can help us see the dementias differently, not just because they have the flexibility to reflect different cognitive strengths and weaknesses, abilities and challenges, but also, because they can tap into hidden internal experiences that people, I think, often just assume aren’t there. Subjectivity is quite a difficult concept to grasp. To me, it means getting a sense of self. I think, the best way to think about the importance of subjectivity is to first, consider the doctor/patient relationship. So when I go to see my GP, she will look at me objectively for signs of disease. So she will look for all the things she learned in medical school about disease indicators.
Skip to 0 minutes and 55 seconds And she will ask me about frequency of episodes of my disease or condition. And she will look at data sets. She will look at blood results and she may look at x-rays or MRI scans. So objectively, she will have a picture, but she will have a picture of the condition. She won’t have a picture of me. So to get that subjective angle, she also needs to take into account my feelings, my emotions, my state of mind, and my lived experience of living with this condition– whatever it may be. And we all know that the best doctors treat the patient and not the disease or condition.
Skip to 1 minute and 40 seconds So getting that understanding of the subjective experience– i.e., putting herself in my shoes– is a very important consideration for her, in how she’s going to treat me. So what does that mean for research? Well, for research, we need to understand what’s my lived experience. Now, I may not be the best communicator on that, but there are various ways in which I can communicate. I can tell stories. I can tell my daily routine, my life story, or something that happened to me. But I can also, communicate through art, through poetry, through music. And these are ways that we know that people actually do communicate about progression of disease.
Skip to 2 minutes and 28 seconds So researching those areas becomes very important for understanding the lived experience of a condition. In this case, dementia. With respect to dementia and Created Out of Mind, what we’ve been able to do or the research team’s been able to do is really explore this aspect of subjectivity in great depth. They’ve had access to people living with dementia and their carers. So again, there’s a double benefit there because they can actually map through their artistic endeavours, the lived experience of the person living with the condition, but also, the viewpoint of the carer who is seeing them 24/7, and whose experience and lived experiences is equally as important as that of the person with the condition themselves.
Skip to 3 minutes and 22 seconds And obviously, you get different narratives from the two and being able to do a nice comparative between what you understand the patient is living with and what you understand from the carer, is a very important aspect to the research. So I think this has been an incredibly rich and exceptionally important study that not many people, other research teams have had the ability to do or the chance to do because of the way that funding in this area works. And having the space to do it in has been quite amazing.
How can the arts help us see the dementias differently?
Professor Sebastian Crutch and Dr Tony Woods provide an overview of why the arts enable us to see the dementias differently.
In this step you will learn about the value of the subjective experience, and why it is particularly important when working with people living with a dementia.
You will learn how the arts have the flexibility to tap into a person’s different strengths and weaknesses, and be encouraged to think about the difference between the biology of a diagnosis versus the lived experience of a diagnosis.
You will also hear about how the Created Out Mind project has been carrying out research that has focused on exploring the lived experience of dementia, which not only refers to the person living with the diagnosis, but also to their families and friends.
CREDITS We would like to thank the Dementia Research Centre and the individuals affected by dementia who have given consent for the supplementary footage to be used in this video. * ‘My view is always unusual’ decorated plate by John Fowler, produced during ‘Me Old China’ ceramic decoration workshop led by Charlie Murphy; photograph credit Ellie Hemsley/ Wellcome * ‘You Are My Voice’ cyanotype by Janet Horton, produced during experimental printing workshop led by Charlie Murphy for Dementia Awareness Week 2017; photograph credit Dominic Graham/ Wellcome *
© UCL/ Created Out of Mind