Arts and Dementia Conference

On the 9th March 2017 I went to London with a fellow friend Dianne and our lovely student Kristina (I usually call her Katrina so I hope I got it right) to the 1st International Arts and Dementia Research Conference.

I was dreading going 1) because it was going to be a really long day and I get tired quickly 2) the trains being as busy as there are that time of morning and 3) people being as busy as they are in London. Lol!!

I got up at 5.45am and had already booked a taxi the night before to take me down to the station as no buses run that early. Managed to get seats on the way to London, once there we went on the Tube which I hate. Not because I have dementia, I would have hated it before as well. All those people squashed together like sardines, we really couldn’t get on the first two trains and then Kristina grabbed my hand and got me onto the third train, standing, squashed and bless she was really good. Kept asking if I was okay. If she hadn’t had pulled me on, I would still be waiting I think!!!! Lol!!

We got to Portland Place on time just a little before 9am, so that was good as I hate being late for anything. There was coffee, tea, water and juice, with biscuits on arrival and we had to register and was given a name badge. Then we were told that we had to choose a room to sit and then stay in that room all day, so we weren’t too happy about that. We got sent a programme, beforehand, of different talks that were happening and we marked down what ones that interested us and they were all in different rooms. So, we thought that was bad planning on their part for not making it clearer. However, in the introduction speech we were told we could go to whatever talks we wanted to, space allowing, so that made things easier.

Portland Place dates back to 1775 and is a beautiful historic building. I wanted to take some pictures of the ceilings to show you but it was really hard to do it discreetly. There were large chandeliers hanging from the ceilings, showing beautiful colours when the sun shone on them. There were five different rooms all with different décor and just stunning. We went into 4 of them, Heggie, Sainsbury, Harben and Founders.

We started off in the Sainsbury Room where we were welcomed, followed by a talk by Anne Basting, an American professor from Wisconsin – Milwaukee. And I liked her talk very much. And she was my favourite speaker of all I think. Probably because she proactive in bringing positivity about dementia. She has written a few books ‘Forget Memory: Creating Better Lives for People with Dementia’ is one.

Anne has also completed numerous projects including The Penelope Project which focuses on Homers Odyssey and was based at Luther Manor Retirement Community. There are about 700 residents and they all got involved somehow and when it suited them, which is nice cause they had the choice.

This is Anne’s site if anyone wants to look up any more of her projects. All of her projects encouraged interaction from others living with dementia and I like that a lot. The thing I remember more about what she said was “Your Story is my story” and “beautiful questions” meaning all questions which are asked to others which are open are beautiful cause they encourage a person to open up about themselves whether it’s a little or lot. All her projects have positive impact on others.

We had a coffee break and then we went to the Heggie Room. The talks were 1) about ‘play’ and people living with dementia, about them living in the here and now, living in the moment. 2) Remembrance Dance, something that is happening that encourages good quality of life for people living in nursing homes with dementia by the power of dance. They said that in Denmark, all children learn dancing at an early age and these dance skills can be recognised even if nothing else is. The body remembers what the mind has forgotten. Then someone from the Aged Exchange spoke about improving the wellbeing of people with dementia. All easy to follow and understand and I felt at ease then. I wrote simple notes to remind me of different things. The speakers were from USA, Netherlands, Denmark and UK.

Then we had lunch which was provided. A choice between hot and cold and there were gluten free choices as well. Plenty of fluids were provided as it was a beautiful day outside and hot inside.

In the afternoon, we split up and went to different talks but it got more complex as it was more research based stuff in the afternoon. Someone told me to let it wash over me if I didn’t understand it which helped me a lot. The only talk I was interested in was Creative stimulation: Living with dementia and I was a little bit disappointed as again the ethos was concentrating on the elderly population living with dementia. The whole day was centred round it to be quite honest and us, young ones living with dementia got forgotten.

We had one more talk to go to and then we ended on a hour long discussion which was a bit complex and Dianne and I looked at each other numerous times and we got lost. But my ears picked up something that was said about carers and nursing, then I joined in the conversation and it felt fine.

We had an evaluation form to fill out. It’s a shame only Dianne and I went as those living with dementia. The conference was open to all. It was quite nice to network and we got chatting to someone who found it interesting that we did talks to post diagnostic groups. My bugbear was that it centred on the elderly over young. I have also suggested that it would be nice to have a speaker who lives with dementia who is involved in something creative. Next time Dianne and I said we would stay in London and go to the second day as well as that looked interesting.

All in all, it was a really good and interesting day and I was pleased I went in the end. I got home at 20.40 in the end. Today is a restful day.

Author: tracey28

I was diagnosed with early onset of Alzheimer's Disease and Posterior Cortical Atrophy in December 2015. I cope with having this by being optimistic and positive, and by being vocal about dementia. Its not a case of it being shoved under the carpet or not being spoke about like it used to. How else can we learn if not open about it. I do a variety of things to get out there and keep my brain active which is the most important thing. This is what I am going to share with you, my poems, positivity, etc. It doesn't have to be doom and gloom when you have a long term condition.

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