Why see this show?

Last night was opening night of Memoria. For the last six weeks everyone involved has been working hard to create an experience we can all be proud of.

There were a lot of nerves, for those on and off stage. There was also a lot of excitement to share our work with our live and online audiences that cover the globe.

But of course a production that involves a group of people talking about their experiences of dementia doesn’t sound like the most jolly or entertaining evening out at the theatre.

It would be easy for this show to be all doom and gloom or a lecture about how not enough is being done to help those with a dementia diagnosis and their loved ones.

Re-Live do hope to raise awareness about the many different forms of dementia and hopefully encourage those with the means to fund more research and support. But essentially the production will explore the reality of living with dementia. The everyday challenges and amusements.

Just like everybody else, people with dementia have good days and bad days.

Our musician James and some of the cast in rehearsal

If there was more awareness about the changes dementia can cause in a person then as a society we could be more tolerant, more supportive and much more inclusive. Care homes and hospitals can provide the best care if they get to know a person’s individual needs. There could be a lot more hope for everyone.

Last night was completely sold out and we had a great online audience who shared their thoughts via Twitter. We have two more shows and we would love for you to join us.

You might learn something or have your assumptions challenged. You may relate to some of the stories the group share. But if you see this show I promise you will be moved by what you see and hear.

Throughout rehearsals we have cried, all of us. But we have laughed a lot more. Come and share these emotions and get a glimpse into the incredible lives of the people who are brave enough to share their stories with you.

Some of the great feedback from last night's live and online audiences:

“It’s honest and touching”

“There’s real emotion and power”

"A powerful and moving production"
"Inspiring self advocacy that needs to be heard, was proud to be in the audience"

Why we don’t like the words “sufferer” and “carer”

It seems that every article written about dementia will call those with a diagnosis “dementia sufferers”. Yes, of course living with any form of dementia is difficult, every day throws up new challenges and currently there is no cure. But why does that mean you become a “sufferer” rather than a person living with a medical condition?

Our group have proved week after week that life can still be good even with dementia. Jill and her husband, who had dementia, went on trips all around the world even after diagnosis. Carri has found that her relationship with her mother has grown as her mother is able to say things she never would have before. Jeannette still visits care homes to sing for the residents even though she has been recently diagnosed with Alzheimer’s, music is part of her and she never forgets the words. Patrick still goes for a pint with the boys from the rugby club. Does any of his sound like suffering?

All of a sudden people with a dementia diagnosis are labelled “sufferers”, like they don’t have a choice to make the most of every day. Although there is currently no cure there is still hope for a fulfilling life and warm relationships. Let’s make the most of that, rather than focus on the negatives.

Jeannette and her husband David

Another term I personally take issue with is that of "carer". At what point does someone stop being a husband, wife, child or sibling and become a carer?  Why is that distinction made in official medical correspondence? As someone’s spouse you make a commitment to love and care for your partner ‘in sickness and in health’.

Throughout your life you will always care for those you love, why does a medical diagnosis make that care your only role? You can still have fun and do the things you have always done together. Your role in your loved one’s life is so much more than just that of care giver.

Although it may seem pedantic to pick apart these terms they are having a negative impact on people every day. Seeing yourself labelled as a “sufferer” or “carer” can change the way you feel about yourself. Obviously these terms aren’t intended to offend anyone but that doesn’t mean they don’t hurt.

Some of the aims of working on Memoria are to reduce stigma and raise awareness about the realities of dementia. By telling us how these terms have affected their lives our brave group have opened my eyes and I will be much more aware of how I discuss any medical diagnosis in the future. Let’s hope their stories have the same effect on our audiences.

Let’s support each other in the difficult times and celebrate every positive moment, no matter how small.

Life-Story Work

As I have already said Re-Live specialise in life story work and believe that everyone has a story to tell. But what exactly is life story work?

Each and every person has had a unique life, no one else in the world has had the exact same experiences as you. Even if you have an identical twin that goes everywhere with you, your perspectives and emotions about a situation will inevitably be different.

There has been plenty in the news over the last few weeks about dementia care, particularly in Wales, with some calling for massive overhauls to the way dementia care works. But has anyone bothered to ask those living with dementia what they think? Has anyone asked their loved ones or carers what needs to be improved? Did they ask the staff at care homes or the nurses on the wards? Probably not.

By asking the participants in Memoria to share their personal experiences and feeling about their dementia journey we can all gain a more rounded perspective about how best to interact and care for those diagnosed with the many forms of dementia. After all they are the real experts!

Carri shares her stories in rehearsals

Of course every person’s journey is different but there are clear similarities in every story. We hope that by helping these amazing people get their voices heard that they will be able to raise awareness about dementia and maybe change people’s opinions about the condition.

Over the last few weeks in rehearsals we have all been getting to know each other better. Sometimes this is facilitated by exercises designed by Karin and Alison to guide the group towards particular topics. In one of these exercises some of the group shared photographs that mean something to them or the people they have cared for, it’s incredible how many memories are awoken by a photograph.

As we continue this process of sharing and learning Karin and Alison will be structuring the final performance around the stories that the group have shared throughout the weeks. The rehearsals are a confidential space where everyone in the room trusts each other, so only those stories that the group are happy to share with a wider audience will make their way on to the stage.

Although the performances will have a structure, there will be no formal script. Each member of the group will be able to share what they feel they want to on each particular day and in any way they see fit. The public sharings may include readings of work the group have written, movement pieces or projections of their photographs. It may also include none of these things. Only time will tell!

The Whole Team

So last time I introduced you to Alison and Karin, the core team of Re-Live. Although they are obviously very talented and completely passionate about the work, they wouldn’t be able to do it alone. So here are some quick introductions to the rest of the team working on Memoria.

Julie Towson is our wonderful stage manager. Having trained at Royal Welsh College of Music and Drama Julie has worked in theatre and events for over 15 years. She has worked for all kinds of organisations including the Tobacco Factory in Bristol. She even spent some time living and working in New Zealand. Her big passion is animal rights and she always walks her two dogs at the crack of dawn before coming into rehearsals.

Our incredible set is being designed by Garry Bartlett. He also designed Re-Live’s last show ‘age’, including the beautiful poster. As if that wasn’t enough Garry is also a technical wiz and constructed the Re-Live website. What would we do without him?

To compliment Garry’s inspired set Dan Young will be designing the lighting. Dan has worked on previous Re-Live productions collaborating with Garry. Having worked at Chapter since 1997 Dan, in his own words, ‘can be found haunting the darkened backstage areas of the theatre’.

The Company having fun in rehearsal

Next up is the multitalented James Clark. If you’ve seen any other Re-Live productions James’s face will certainly be familiar. Currently James is studying music at Royal welsh (everyone seems to train there!) and plays the piano and accordion. He is composing original musical accompaniment for Memoria and is in every rehearsal providing atmospheric music.

I haven’t said too much about the online aspect of this production so far, I’ll lift the lid next week. But working hard on getting us ready for our online broadcasts is our mega talented Digital Producer, Alex Russell. Alex has recently worked on good cop bad cop’s “Lleisiau/Voices”. This unusual event also took place at Chapter and was shown online for all to see.

Last but not least is me – Chelsey. I’m doing the marketing for Memoria, contacting organisations who we think may be interested in the work, posting on Facebook and Twitter and obviously writing this blog. I’ve been a huge fan of Re-Live since I saw their production of Abandoned Brothers and I haven’t missed a show since. It’s a great privilege for me to be part of the team for such an inspiring production.

The Team

As we will be asking the group members to share so much over the project I thought it was only fair to share a little bit about the creative team too.

Re-Live is a professional theatre company that specialises in creating life-story work with people on the margins of society. Their motto is “everyone has a story to tell” and they are passionate in their work to share these stories with the wider community to promote better wellbeing and understanding. They also offer training courses in life-story work and experiencing dementia for theatre professionals, care workers and members of the general public who have an interest in these areas.

The core team consists of Alison O’Connor and Karin Diamond who established Re-Live. Since then they have gone on to create work with a whole range of people; from war veterans with PTSD, to those experiencing end of life care. Their work always allows those on the edges of society to be heard.

Karin and Alison looking lovely

Alison is a Cognitive Behavioural Counsellor, having trained at the University of Wales. Her particular expertise is working with older adults. She uses these skills and her experience of applied drama work in hospices, residential homes and other care settings when creating work as Re-Live. Alison has recently been awarded a ‘Creative Wales Award’ from The Arts Council of Wales (2013) to explore “Transformation in Arts and Health: Stories that Change”.

Karin started out as an actress working in theatre, film and TV and then developed skills in writing and producing original work. She is a very experience drama practitioner and uses theatre for training and development, having designed numerous programmes for organisations such as Healthcare Inspectorate Wales and Social Services. In 2010 Karin was awarded a Winston Churchill Travel Fellowship to research ‘Arts in dementia care’ with Dr Yukimi Uchide in Ofunato, Japan. This experience in Japan has great influenced the work of Re-Live and has particularly inspired the work on Memoria.

To see Karin’s incredible video about her time in Japan click here.

First Impressions

Beginning work on any creative project is always equally exciting and daunting. You know there will be challenges and set-backs but these are always somehow overcome. The anxiety before stepping into the first rehearsal and meeting the people you will be working with is always unnerving. This feeling is ten times greater when working on a project like Memoria. There is no script, no actors and no set path.

Over the course of seven weeks we will be working with people affected by dementia, asking them to share their own personal experiences and stories, that are often emotional, both good and bad. Most of these people have not performed in a professional theatre before and this is their first experience of creating a showing from scratch.

Although Re-Live have created many touching and innovative performances working with real life-stories, Memoria poses a whole new challenge. The creative team will be working with two groups of people that will eventually come together for the final public sharing. One group is made up of people who have recently been diagnosed with dementia, the other consists of people who have or did care for a loved one with dementia and even a care home manager.

Although there are many different forms of dementia and each individual is affected differently one of the most common symptoms is short term memory loss. This is clearly going to affect the creative process where members of the group may forget what they have shared or why they are even in the rehearsal at all. As a company Re-Live take issues of consent and capacity very seriously, as it is so important to ensure everyone is happy and comfortable to share their stories and is able to make an informed choice about what to share.

So far I have only met with the group of carers and loved ones. Already this group of inspirational individuals have come together to form a supportive group and everyone is so willing to share their experiences. There have been one or two tears here and there but mostly we have laughed. There are so many funny anecdotes  - some intentionally hilarious, others complete accidents. 

I have already learned so much, some of which I will be sharing via this blog over the next few weeks. To help me learn more I have also signed up to a free online course run by the University of Tasmania – “Understanding Dementia”. I hope this online programme will help me gain some insight into the world of those with a dementia diagnosis and therefore make me more considerate to the needs of people with dementia in our society.

To find out more about this course and perhaps sign up yourself click here.

Here are articles I have written about previous Re-Live projects, click on the links if you would like to read more:

Abandoned Brothers – a touching project with veterans diagnosed with Post Traumatic Stress Disorder and their family members

Age – a group of inspirational and often hilarious older people shared their stories of the past and hopes for the future

Belonging – a more ‘traditional’ theatre show about dementia that is suitable to tour care homes, schools and community venues as well as theatre spaces.