Dementia Without Walls – Final Get together – Day 2!

Wednesday 7th Oct

The day started off nice and slowly with an early get up and a relaxed breakfast. We all met again and were ready for the packed day ahead.

We seemed to talk about many, many things throughout the final day and I’d actually typed enough for 4 blogs so it must have been good!, however I will only write the second day as 1 blog but highlights were:

Janet Dean who wrote the evaluation reports for Joseph Rowntree started with ‘How can we make cities dementia friendly’ – Sharing the learning from Bradford and York. Suddenly, here were people with dementia starting to influence and bring about change in their communities
One comment that rings true in York at the moment is that sometimes services are competing and all should collaborate and promote each others services – this prevents people from knowing the full extent of what’s available in their area…………

Janet Dean
Janet Dean

Next Nada and Reinhard talked about DEEP – Dementia Empowerment and Engagement Project. Those of us who belong to the DEEP Network are people who want to influence something –it’s developing a national movement of people with dementia.
Showed the film ‘language matters’ – words hurt. I’m forever banging on about appropriate use of language in all arenas and will continue to do so.

Me, Sarah, Agnes and Donna did our bit on Women and Dementia –
which opened up whole more questions than answers.

Left to right - Nada, Agnes, me, Sarah & Donna
Left to right – Nada, Agnes, me, Sarah & Donna

We talked about the Women in Dementia project. Why there’s a need for women only services – the dynamics are very different when you have all women groups. If you think about when you have a girlie night or for the men a night out with the boys, the dynamics and conversation is very different. Women feel more comfortable talking in single sexed groups. Some women feel intimidated and are more likely to speak freely than in a mixed group.
We want people to speak openly and honestly – women make other women feel comfortable at speaking about their experience.

Toby Williamson – talked about exploring experiences of people with more severe dementia with Daphne Wallace. How to deal with people not recognising loved ones or thinking people who have died years before, or who believe they are alive are common issues faced in the later stages.

They spoke of needing to find ways which are not deceitful – people forget that people with dementia have thoughts about things in the past.

What is the most helpful response?

‘going along with the experience’

It is not unethical but valuing the persons experience.

You can’t alleviate the symptoms – you have to understand how the experience fits into their world.

image

People often find talking about the future difficult in any situation. For people with Young Onset it’s even more valuable. If you talk about your concerns and fears and possible effects you can prepare and be open about the future before it happens – you can also impact on developing and creating strategies and services used by services in the future.

Katherine and Eddy from York then spoke about his involvement with the Joseph Rowntree Foundation and how it had made him feel.. A group of people with dementia, including Eddy, looked at application requests for funding from the perspective of those who were going to benefit from the project. Eddy said:

‘The experience lifted me. My opinion was sought.They accepted every word we said. They sent us a letter of thanks. We were part of their decision making.’

Keith Oliver then spoke about Dementia without walls.

image

He dedicated it to Rosetta Milton – Racheal and Steve Milton’s newborn daughter

‘we want her to live in a world where dementia isn’t feared.’

Keith, like myself receives many requests and invites, however he has learnt to use the following 4 questions to help him decide whether to accept

• Are the dates and location convenient
• Will I be supported
• What impact on me and those closest to me
• What impact on the success of the piece of work

I’ll now be using those questions so I don’t end up with 2 solid weeks as I’ve currently got!!

Keith said that we’re in a very new era for people with dementia  collaborating in so many projects – the impact can be inspiring, challenging and supportive both for the professionals and other people with dementia. It should lead to change in professional practices.

Keith was a Headmaster in his former life and it shines in his presentations. Telling a story has a place but we can do more than that – we can inspire change.
Feedback is crucial when we’ve spoken at events or been involved. We don’t seek rewards but what we do appreciate and take enormous pleasure from are the quiet thank yous – the emails which state what an impact we’ve had on people’s views. These small ‘nuggets’ of appreciation mean the world to us.

Living interdependently within the community – don’t isolate people by providing service within their home – independent living – make it ‘normal’ within the community to have people with dementia.

We finished off the exhausting but exhilarating 24 hours by talking about the Future and the legacy of Dementia without walls

The practicalities of how to now take this forward?
Nikki Crowther – from the Alzheimer society – spoke of how the society will take on Dementia without walls. She was struck by the partnership work. She would like to bring together DEEP groups , dementia friends and Dementia Action Alliances –and she wants to make the relationship special with DEEP. She would take away Keiths experience of Talking Point (which was the same as mine when I was diagnosed – to us it came across as somewhere carers rant and raved about loved ones which was fine for them but disturbing for us)

There are many new and exciting things in the pipeline for 2016 – We will continue the influence of all that we’ve learnt with the project in the wider world. Nada then launched the New web site.

http://dementiawithoutwalls.org.uk/what-is-dww/

Me and Keith said:

“we need to get this web site to all those newly diagnosed as the images are refreshingly up to date and nothing like the images in the media.”

It’s important to make sure the project doesn’t just come to an end but to influence people outside this room.
Project has all been about the Voices of people with dementia and far more are now speaking out around the world.
Someone said that:

‘We need to bottle what’s in this room to enable it to be shared by others.’

Once again by mid afternoon my brain had disengaged and gone into hibernation once more. We had a wonderful couple of days with wonderful company who inspired each other to continue with renewed enthusiasm…

A big thank you to Nada and Philly and all those other professionals who support, encourage and provide the opportunitites for us to speak out
A big thank you to Nada and Philly and all those other professionals who support, encourage and provide the opportunities for us to speak out……..

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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