Hi everyone,

If you haven't already come across this yet I would urge you to listen to our podcast 'Three Lovely Ladies', click the link below.

https://bedfordradio.org.uk/2019/06/30/tibbs-dementia-foundation-three-lovely-ladies-june-2019/
 
These ladies spoke so openly, honestly and with real insight about their experience with dementia. Margaret- Anne's blog this week reflects on the importance of communication and we hope to use the medium of podcasting regularly in the future to share experience, ideas  our hopes to try and help others understand what life is really like with dementia and the things that can help us all to live as well as possible. We hope to use podcasting to share ideas about other things too, our outlook on life, what makes us tick, the value of friendship, laughter. So listen in and if you feel inspired and have something to say let me know and we'll make sure your voice, your views and experiences are heard too. 


Please note that as is our tradition our Music 4 Memory groups take a summer break during August. The last Music 4 Memory session will be the Potton session on Wednesday 31st July. We start back on Monday 2nd September, with our Charter House group. The one to one 'At Home' sessions continue as usual during this time.

Don't worry, as we will finish in our traditional way with our Summer Spectacular and this takes place on Saturday 3rd August from 3pm- 6pm at Oakley Village Hall. Tickets are 5.00 and can be purchased in advance or on the door, Bring your own food and drink, bring your dancing paraphernalia and make sure you're limbered up for a fun filled afternoon. 

This summer break gives us all a chance to relax, reflect and replenish before we start back energised and enthused for a busy Autumn which includes our next Hear and Now collaboration with the Philharmonia Orchestra and Fusion  youth choir.

Did I say Summer break???

See below for a full range of extra activities taking place throughout July and August to keep you fit, active and creative. Hopefully something for everyone, why not try and new activity over the summer. 

Art classes:
Our popular art classes resume on Monday afternoons from 22nd July until 2nd September from 2pm- 4.00pm at the Higgins Museum. All welcome to all or some sessions, just turn up and have a go. Sessions are just 5.00 { or a manageable donation] and include all the resources you'll need as well as tea and biscuits.

Nordic Walking:
This Friday we welcome our Nordic Walking specialists Paul and Sheila back to our afternoon walk in Bedford Park. Please come and join us for a relaxed stroll or more strenuous stride around the park before relaxing and chatting over coffee and perhaps and ice- cream. On Friday 9th August we are planning a Nordic Walking Taster session. This will take part in the morning from 10.30am until 12.30pm and we will meet at the kiosk in Russell Park.  We'll start with tea and coffee that can be purchased at the kiosk and then start Nordic walking between 11.00am and 11.15am. We'll have options to walk around the top part of the river taking in the beautiful view from the butterfly bridge or to walk around the park practicing using the poles and perfecting technique. Thsi is a free session, just purchase your tea and coffee from the kiosk. Why not consider bringing a picnic lunch and making a day of it? 

Anyone for tennis........???
As I write this I am somewhat distracted as the Wimbledon final is on in the background. Why not come along and perfect your tennis skills over the summer at our special short tennis sessions. Using a soft ball this is a safe and perfect way to boost your fitness, have fun and meet new people. We'll be meeting for 6 sessions over the summer on Thursday afternoons from 1.30pm- 3.30pm. Sessions will take place indoors at The Athletics Stadium on Barkers Lane beginning on 15th August. Sessions cost just 4.50 per player and you can stay come for each session or some and for all or part of the time. All equipment provided just wear comfortable clothes and soft shoes. 
 

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Margaret - Anne Tibbs: Blog 45
The power of speech

In my last blog I was talking about Connections. I don’t know if anybody read it, but my starting point was a definition by a top neurologist in the field who says that dementia is a loss of connection with self and society.

I have been thinking a lot in the past few weeks about connection and communication. It’s a big issue in some of the groups in which I’m involved - Support 4 Memory and Clear Voices specially. It is also very important in CST, which I sometimes get to observe on a Friday afternoon. We take language for granted and nobody gives it a second thought unless there is a problem. As human beings we are driven to communicate – preferably with words, but in other ways when words fail us. This is not made any easier if your hearing is impaired, as is the case with several of our members.

In our groups we are very attuned to the needs of people who have something really important to say but just cannot assemble the words in the right order so that they can share it with others. Those of us who have been facilitating these groups for some years know that we have to use certain strategies. These strategies are no longer conscious as we have internalised them over time.

We try to talk more slowly. We try to structure the group so that only one person talks at a time. We know that if a member of the group is struggling to express themselves, we may need to give them enough time to find the word. Or we may need to offer suggestions to help them catch the elusive word. It is different for different people and so we learn this from them as we get to know them better.

The other thing that can happen is that they can lose the thread of what they are saying. They will be aware that they are getting in a muddle and will usually acknowledge this and ask for help. I think the fact that they do so is because they feel that the group is a safe space and that they will not be judged if they lose the word or the thread or keep repeating the same story. Our aim in these groups is that nobody will go home at the end of the hour and a half feeling that they are a failure because they have been unable to express what they wanted to. The whole group will join in with hunting for the word – and sometimes we clap when we’ve found it! People support each other in these situations, offering words of comfort and solidarity.

I was reading the current issue of the Journal of Dementia Care (www.journalofdementiacare.co.uk) which is always full of goodies to read. Thinking about communication as I am, an article about Dementia Diaries caught my eye. Tibbs Dementia was very involved with this project when it started and as far as I remember we produced 5 people who took part. The idea is that people taking part complete an audio diary which becomes a permanent record of what living with dementia is like. When we took part, people were issued with a very basic recording device made on a 3D printer. I remember being blown away about the fancy technology.

Luckily, I just checked on the web site and it appears that now people can use their own phones as an alternative to the recording devices. The person records what they want to say, and it goes straight to a dedicated voicemail phone from where it goes via the internet to the team of people who transcribe the entries.

These are now widely available in various online forums. Originally founded by On Our Radar, it transferred to DEEP in 2015. It is now run by Innovations in Dementia with funding from Comic Relief and the Big Lottery Fund.

Our people who made recordings chose to use it in different ways. One person had it with him all the time and shared his thoughts as he went about his daily life. Another chose to write down what he wanted to say and then recorded it, once every couple of weeks.

It occurs to me that there are several people in our community now who might enjoy doing this. If you are interested talk to Sarah or myself. Or you can investigate it yourself. www.dementiadiaries.org on Twitter@dementiatweets or Facebook@dementiadiariesposts. If anybody feels they have something to say about your life with dementia I would strongly recommend you have a go.

Another article in the Journal which took my eye was about the value of reading. This has come on several occasions in the groups. Some people are finding it hard to read because of the dementia. If you have never been a great reader this is probably not a big deal but for other people, it can be huge. The article I read was about providing cognitive stimulation through book clubs in care homes. Which is not really relevant to us. But the idea is.  It seems that it is used in care homes using the Montessori method which I blogged about ages ago.

They adapt and print several copies of books which are usually factual. They have to be short and the size of the font is .34 – which is big Words are written on every other page. There are no pictures and there is a box inviting the reader to read the next page at the bottom.

Apparently, people take it in turns to read - as I have seen people do in CST groups. The article is by Lynn Phair and Sally Dando and is a report of a research project. You can read the article at Vol.27 No.4 July/August 2019 The Journal of Dementia Care. They conclude that “People who were previously thought to be unable to read demonstrate that this skill has not been lost if they are supported with suitably adapted resources”.

A conversation last weekend suggested another response to problems with reading. Why not find a friend who would read to you? This should be fairly easy to arrange. We might be able to find volunteers. Just putting it out there!

Both these subjects related to connection through communication echo the message of “The Restaurant Which Makes Mistakes”. I know lots of us have watched it. If you haven’t - get it on Catch Up. It really is a Must See. That is the central message of the experiment “People who were previously thought to be unable (to do whatever it is) demonstrate that this skill has no been lost if they are supported with suitably adapted resources” I think I’ll blog about that next time.

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Young Onset dementia:

We're working with colleagues at the Memory clinic to set up a focus group to which we'd like to invite people affected by young onset dementia. So if you were diagnosed or are supporting someone diagnosed or with symptoms who is or was at the time under 65 we'd love to hear from you. Your views, ideas and experiences would be so useful to us as we try to look at ways to provide specific support and advice that might help you and others.  Please contact me contact@tibbsdementia.co.uk  and I'll give more information.
 

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With best wishes

Sarah Russell, CEO