Beyond Memories

Last weekend we hosted our Beyond Memories workshop - an opportunity for people with dementia, their families, scientists & artists to interact, ask questions and get their creative juices flowing.

The day was split into two parts, an art workshop & a ‘world café’ where all attendees were given the opportunity to discuss everything around dementia. Scientists met and learnt first hand from people with dementia about their lives whilst those with dementia and their families could ask the burning questions that they’ve always wanted the answers to.

Artists Sophie Michael, Nicole Morris, Natasha Cossey & Kim Leigh Pontin approached dementia through a range of media – drawing, painting, photograms, linocutting/printing, projection & VR. 

The projects that the groups worked on through the day will contribute to the artworks on show at Beyond Memories, an exhibition realised from the themes & discussions which took place at the workshop. The date for this exhibition is TBC.

 

Going Beyond Memories - A Review

 

Laura Marsh (Research Assistant at  Department of Psychological Medicine,  Kings College London) joined us at our Beyond Memories workshop to review the day which focused on dementia. Read what she has to say below:
 

Last week I attended the latest London Brain Project workshop, ‘Beyond memories’, which brought together artists, neuroscientists, people with dementia and their carers to collectively create artworks that explore different perspectives and experiences of dementia.

This merging of people from such a range of backgrounds set the stage for a day of thoroughly engaging discussion and conversation, highlighting the value of such collaboration of minds.

The day began with a range of creative activities, carried out in small groups led by four different artists. As I rotated round each of the groups I was struck by the different takes each of the artists had taken in their planned activities, and the variety of discussion this was promoting.



The Home and Identity

 

Working with artist Nicole Morris, one group considered their ideas of a perfect home, sketching out ideas and thoughts and later combining these in a collaborative print of this imagined house. Amongst discussion about the necessary features of this perfect home, individuals began to share personal memories and stories from their lives. As someone who studies this type of memory, known as autobiographical memory, I found this discussion particularly interesting. Even when more recent memories were hazy, it was clear that many people with dementia still took great delight in recalling and sharing stories from earlier in their lives. Such memories play a central role in one’s sense of personal identity, and this kind of activity can contribute hugely to the wellbeing of someone experiencing memory loss, helping to reinforce a sense of self. We heard, for example, about one lady’s memories of dancing late into the night at big parties in the barn attached to her Italian family home. For another keen cook, the kitchen was the most important part of the home, providing a place for cooking and eating together.

 

Traces Of You

 

Personal identity was a common theme running through several of the creative workshop groups. Artist Sophie Michael led another group in the creation of abstract traces of themselves using objects found about their person. As these objects were laid on photosensitive paper, the colour pigment of uncovered areas was gradually degraded by the sunlight, leaving silhouettes of the objects that had once been there. Undergoing further processing the images became increasingly abstract, with the occasional identifiable feature amongst more roughly defined shapes and patterns. I was struck by the way this process reflected the way memory traces continually change over time, interacting with our current selves and becoming looser and more abstract in form, yet remaining rooted in our past experiences and interpretations of reality.

 

Symbolic reflection

 

Natasha Cossey led her group in a slightly different direction, using coloured felt symbols and shapes to represent various aspects of experiences of and feelings towards dementia. The shape of a hand, for example, was cut out of pink felt to reflect the value and importance of touch and gesture. Another couple chose a chain of roses to reflect their journey through dementia, with periods of angst and disturbance interspersed with periods of tranquillity and calm. Later these shapes were brought together in a wall hanging, with several threads representing different life stories and intertwining experiences.

 

Alternate Reality

 

A particularly fascinating take was that of artist Kim Leigh Pontin, who worked with dementia sufferer David and his wife Rachel along with neuroscientist Francesca Cacucci. This group used virtual reality (VR) to allow David to paint in 3D, using prompts such as a favourite song to inspire his mark-making. The results were fascinating, from both an artistic and scientific perspective. Reflecting on his intricate design, reminiscent of some sort of intricate oriental lettering glowed before him in virtual space, David remarked 'I wasn't thinking, I was just creating....it wasn't me making it beautiful, it just happened'.  

 

It was nice to meet people suffering with dementia; See things from their perspective - Person with dementia

Science World Cafe

 

Later on in the day it was the scientists turn to take the floor, providing a chance for people with various forms of dementia and their carers to learn about the latest cutting edge research in the field. With expertise ranging from biochemical and molecular neuroscience to clinical and broader social research, there was no shortage of stimulation for interesting conversation. The scientists rotated around the different groups, allowing plenty of opportunity for questions and inclusive discussion.

What became increasingly clear as the afternoon progressed was an overriding consensus that there is a major lack of public awareness of the many different types of dementia, and the range of ways people can be effected. Commonly considered to be purely a disease affecting memory, many were surprised to hear of types of dementia such as posterior cortical atrophy, which primarily affects vision. Indeed the neurodegeneration underlying memory loss in many common dementias also affect other areas of the brain, and can affect one's spatial awareness, language and ability to regulate behaviour. In light of this it was interesting to hear from Emma Harding and Dilek Ocal, who are working on ways we can better design both public and private spaces to support people with dementia. Using different coloured walls and interior features, for example, can help people with dementia find their way around more easily. We also heard of an exciting project looking at ways in which the different coping techniques that people with dementia use to manage their symptoms could be shared amongst patients and their families.

There was also encouraging news from scientists working on discovering new ways to prevent and treat dementia. Chris Lovejoy described his PhD project in which he is using stem cells to grow new neurons, which he can then use to study the changes that occur in familial Alzheimer's disease. Francesca Cacucci told of an exciting new way to test potential drugs by examining the effects of these compounds on hippocampal place cells, the brain cells responsible for spatial navigation. We also heard about Magdalena Sastre's work on the role of inflammation in Alzheimer’s disease, whilst neurologist Paresh Malhotra encouraged everyone with his anticipation of new and effective treatments for dementias within the next ten years or so.

Living in a society in which we are all likely to be affected by dementia one day, whether as a carer, relative or sufferer, it was liberating to be able to talk honestly and openly about a disease that is so often brushed under the carpet. It was a privilege to hear people talk about their experiences so openly, and exciting to hear about the new approaches and developments in the field. Over the course of the afternoon it was increasingly apparent that there is immense hope to be offered through the exciting work of so many, whether focusing on improving quality of life for those with dementia, or looking at preventing, slowing and treating the neurodegenerative disease. The role of creativity in exploring and communicating personal and collective experience was also highlighted. It was a pleasure to be part of such a stimulating event, and I am very much looking forward to seeing the finished artworks displayed in the exhibition later this year.

Talking to scientists was really helpful to get their insights - Relative of a person with dementia

Today re-confirmed something I learned about dementia a while ago - every person with dementia is different, has a story, and is an individual - Dementia researcher


What is dementia?

 

Dementia affects over 850,000 people in the UK. By 2025, over 1 million people in the UK will have dementia.

Most people develop dementia after 65 (over 7% of people over 65 have dementia) but there are also over 40,000 people with early-onset dementia.

 

Dementia is a neurodegenerative disorder.  “Neurodegeneration” is an umbrella term for the progressive loss of structure or function of brain cells or ‘neurons’, including the death of these neutrons. The most common type of dementia is Alzheimer’s disease but other less common forms include vascular dementia, frontotemporal dementia, dementia with Lewy bodies, and Pick’s disease. All of these disorders affect the brain differently and ‘progress’ or cause behavioural deterioration at different rates.

Some forms of dementia-like that experienced by Merideth Grey’s mother in Grey’s Anatomy-can be attributed to genetic factors and although we are learning a lot more about ‘risk factors’ we still know very little about who and/or when an individual develop dementia. This is why huge amounts of funding are currently being invested into the area of dementia research both in the UK and globally.

How can dementia affect everyday life?

Dementia affects each person differently. People typically associate dementia with memory loss - which is mainly caused by changes in a brain area called the hippocampus that forms everyday autobiographical memories. The effect of memory on dementia is portrayed through Allie in the movie The Notebook or is witnessed for the main character in the book/ movie Still Alice but there are many ways in which it can affect how a person behaves and thinks and some of these are outlined below:

  • Difficulties communicating what they want to say

  • Feeling confused

  • Problems with abstract thinking and planning

  • Loss of motor skills affecting co-ordinatio

  • Change in emotional state or mood

  • Memory loss

  • Visual or auditory hallucinations which can be frightening or confusing