Tag Archives: young onset dementia

Memories and Photos from 2014

“Living well with dementia”
Thank you to all that have helped, assisted and supported me this year, you all know who you are !
Sorry to those of my friends I’ve missed xx

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Reflecting on my year as a Dementia Advocate 2014

Dementia friends Champion Training :

After my diagnosis we knew nothing about dementia, We thought how many people knew nothing also. We wanted to do something as regards dementia awareness, we heard about Dementia Friends Champions.
So we went to have a look at what they were offering, it really surprised me. It was a great info session expelling some of the myths and giving a bit of insight into what Dementia is.
It asks to turn understanding into an action no matter how big or small.
I now wear my badge with pride and use it to start conversations about what the word ‘Dementia’ really means.
Jayne and I have completed many sessions of our own now and have made over 300 dementia friends across the UK.
At the Champion training we attended is where we first met Peter Ashley, another dementia advocate and now a good friend.

Dementia Friends Launch in Wales :

We were asked to attend and speak at the Launch at the Millennium Centre, Cardiff, S.Wales on behalf of The Alzheimer’s Society.
We were very proud to be asked to do this as the Society have been a big help to us, we appeared on stage with Sue Phelps, director for Alzheimer’s Society, WALES and actress Ruth Jones.
I spoke about the importance of the initiative coming to WALES and the importance of understanding Dementia.
Sue Phelps read out on of my poems and did it proud, it was well received.

NHS Expo, Manchester :

We did a Dementia Friends Session with one of the hosts and then took part and spoke on behalf of Gill Phillips of ‘whose Shoes’.
We also met up with the great Tommy Whitelaw ( tommyontour) and the lovely campaigner and blogger Beth Britton.

Wrexham Dementia Awareness Event, N.Wales

Ian Lucas MP and his wife arranged an awareness event in the Guildhall; local businesses, Councillors and some of the Services were invited.
I did a talk along side two good friends of ours, Anita Moran and Chris Hodge ( who are both PA ambassadors) to those present, explaining about dementia and the need for more awareness to reduce stigma and give more support to folk with dementia.

Sheffield, England, Dementia Arts Exhibition :

Held every year in the University, art, poetry and models by anyone that has dementia is put on display. I was asked to bring some of my poetry along by the lovely Natasha Wilson, who a lot of you know on Twitter.
It was a great honour to show my poetry there along side some really talented and great work by pwd.

Dementia Friendly Communities conference, Leeds :

This conference was supported by DEEP, Dementia Engagement and Empowerment Project, They bring together groups of people with dementia from across the UK, they then support these groups to try to change services and policies that affect the lives of people with dementia.
They offered Jayne and I a free place at the conference and funded our expenses.
Because of them, 5% of attendees there, had a diagnosis of dementia and had a voice and a story to tell, I listened intently and was inspired.
I made my mind up what I now wanted to do. I also, I wanted to share my story and be an advocate for dementia, I realised that I too had a voice ! Thank you very much Steve Milton and Rachael Litherland for supporting me with my advocacy.
It was also the launch of ‘Dear Dementia’ a fantastic little book by
Ian Donaghy, our thanks to Ian for including us in his book.

The Alzheimer’s Show, Manchester :

This is where we supported Carers Call To Action,who Support the needs and rights for family carers of people with dementia through a shared vision.
We were honoured and humbled to support such a worthy cause, we spoke about our experiences, what support we all, carers and diagnosed, require and how the CCA are helping us to achieve this aim.
Thank you for looking after us so well, Rachel and Louise xx
We met, for the first time and spoke with, my Twitter friend Tommy Dunne and his lovely wife Joyce. Later we all listened to ‘meet the author’ Shibley Rahman, who was also a great friend from social media, talking about his book ‘Living Well With Dementia’. We all had a coffee with Natasha Wilson and Anna Tatton.
Thank you to Nigel Ward for a great show.

The Big Meet Up, Colwyn Bay, Conwy, N.Wales :

Pam Luckock, who actually lives down the road from us, (small world!) and Fran Ohara got in touch for us to speak at their big meet up.
It was full of professionals and service users (or citizens as they were called there) to ‘ join ‘ us up and get people talking to each other, sharing experiences to make services better for everyone, great day, met some lovely people.

Denbighshire County Council EMH Project workers Strategy Meeting :

We were asked to attend their meeting to give our views on the services that they provide and asked us to let them know how they could be better !
Our county is a bit of a success story where services are concerned and here is my chance to take my hat off to them !
Thank you Denbighshire !
Since talking to them and with their and our help, we have a new social group meeting, (in a pub of course like grown ups ! ) on a bus route, with a new one starting soon at the other end of the County very soon, a Cinema group and coming in the new year, A ‘mobile Memory Cafe’ joining up Rural areas and getting isolated people and carers together, something I’m very proud of instigating after a round table workshop discussion in the CCA conference !

The Halton General Hospital, Warrington :

We were asked to view and give some input to their brand new showcase Acute dementia Ward with my great friend Tommy Whitelaw !
what an honour !
It was amazing and Lee Bushell, the Estate manager, had done fabulous job !
Using colour schemes and lots of common sense, and the staff being given ‘permission to act’ it’s one of the best wards in the UK, Our thanks to Karen Dawber, Mel Pickup, the other Board members, and of course Lee for a great visit.
Also our great thanks to the Board of Governors for inviting us to host a Dementia a Friends Session for them.

Peer Reviewer Training, MSNAP, London :
(Memory Services National Accreditation Program)

My friend, Beth Britton gave me the heads up that MSNAP were looking for
PwD and their caregiver/spouse, relative to train as peer reviewers for the accreditation of Memory Clinics in the UK.
An excellent day, thank you Sophie and Emma, a great pleasure to see lots of other PwD attending too, a great turnout ! And nice to meet a new friend Chris Norris.

‘To whom I may concern ‘Online Program :

To Whom I May Concern (TWIMC) is an interactive theater program designed to give voice to people who have recently been diagnosed with a progressive brain illness such as Alzheimer’s disease. Using their own words and scripting, these individuals share their stories and experiences.
Thank you to Maureen, Laura and Stephen for giving us a voice and my great thanks to my friends David, Syvia, Teresa and Charee for sharing your experiences and lives with me.
This production can be seen on you tube.

Dementia Alliance International.org :

“Nothing about Us without Us” and “Of, for, and by people with Dementia” an international group of PwD who have got together and made their own group, promoting a world where a person with dementia continues to be fully valued, to build a global community of people with dementia that collaborates inclusively to:
1:Provide support and encouragement to people with dementia to live well with dementia.
2:Model to other people with dementia and the wider community what living well and living with purpose with dementia looks like.
3:Advocate for people with dementia, and build the capacity of people with dementia to advocate for themselves and others living with the disease.
4:Reduce the stigma, isolation and discrimination of dementia, and enforce the human rights of people with dementia around the world.
I have made some great friends for life in this group, Kate Swaffer, John Sandblom, Susan Suchan and Truthful Kindness amongst the many.
It was my great honour when I was asked to become and accepted to be,
a Board Member in the Summer.

Dementia Mentors .com :

A real pleasure to be a contributor to the site designed and run by Gary LeBlanc and Harry Urban, an excellent site with a great video section where PwD put up videos to help others, and where a mentoring service is available. I have the honour of hosting one of their online virtual cafes.

Young Dementia Uk Conference, Oxford :

YDUK are a national source of young onset dementia information and are always happy to promote other organisation’s news and events.
They have a full events listing of both national YDUK events and regular social events in Oxfordshire.
They are a huge voice and supporter of young onset dementia.
They provide some great services of their own too.
So it was an honour when Kate Fallows asked me to come speak for them, it was a great conference where I met up with old friend Ken Howard and some other friends, new and old, thanks to all involved for a great day.

Carers Call to Action Conference, Government House, London :

Always an honour to support CCA and the DAA, it was at this workshop we came up with the Mobile Memory Bus ! A great conference, always good to hear Alistair Burns, Clinical lead for Dementia in England talk.
A great varied conference where they had, including ourselves, an array of speakers with personal experiences, well done CCA !
Thanks to Our fiend Shibley for coming to support us and thanks to Louise, Peter,and Rachael for looking after us. It was great to meet Suzy Webster too, a great lady x

Alzheimer’s Society Annual conference, cardiff, S.Wales :

Our pleasure to speak for the society ( I am also an media volunteer for them) about the importance of Dementia Friendly Communities.
Lovely to catch up with Sue Phelps and Jenna, and to meet Jeremy Hughes CEO.
Thanks to Helen For looking after us.
The talk from us both was very well received and it was great to hear of all the fantastic things that are going on in Wales.

Alzheimer’s Europe Conference, Glasgow, Scotland :

Our big thanks to Life Changes Trust for their help in attending this major conference and for looking after us, we couldn’t have attended without you.
What can I say ! An excellent conference, 44 PwD dementia in attendance, meeting Helga Rohra and Agnes houston were our highlight, they both work so hard. Great to meet Peter Gordon too, a mutual friend of Shibley and mine from Twitter, along with lots of others old and new.
Our thanks to all the other great people we met, it certainly was a friendly conference and very informative.

‘Week in Week out ‘ program for BBC WALES :

Our thanks to the BBC and their Producer Tim Jones who put my mind at rest about the program and did an excellent job with it giving folk an insight into living with Dementia. Thanks also to the Alzheimer’s Society for recommending us, thank you to all of the nice people who got in touch afterwards.

Alzheimer’s Brace Research Conference, Bristol :

” A Hope for the Future” was the title of the conference, a very successful and well attended day conference hosted by Martyn Lewis.
We were invited to appear on a panel with Beth Britton to give some insight into dementia and discuss the importance of research.
Our thanks to Beth, Martyn Lewis and Mark Poarch the organiser.

WALES audit office Conference, Cardiff :

A conference and workshop bringing together service users and professionals. It was a real honour to hear the other side of service production and planning.
We gained a lot from working face to face with senior leaders from all over Wales and that they too gained an insight into how we access their services and where they can improve the services they offer.We did some filming for this which was used to promote discussion, later I was asked to come on stage and spoke to the conference to finish a very interesting day.
Our thanks to Mark Woods for his great help with the filming and to
Laura Young for looking after us on the day so well.

The UK Dementia Congress, Brighton :

The UK Dementia Congress, took place at the HILTON BRIGHTON METROPOLE, The conference covered areas like Evidence-Based Practice And Innovation, As Well As a Full Discussions Of Obstacles, Problems And Pitfalls.
DEEP groups made a huge contribution at their venue, DEEP joined together with the Carers Call To Action to lead the opening plenary session of the conference. Members of both networks talked about their experiences of dementia and what they needed from the audience. A film ‘Make a point about dementia’ enabled many more people with dementia and family carers to have their voices heard by the whole conference.
The members who spoke were Suzy Webster, Keith Oliver, Tommy and Joyce Dunne and ourselves, “you lot” as Norman Lamb spoke about us.
I later spoke about dementia as a disability and how our rights as such are not being met in a DEEP workshop.
It was an excellent conference, our thanks to the two Rachael’s, Louise and Peter Watson. Also thanks to Richard Hawker publications and all his staff.

Dementia Action Alliance UK, Central Hall Westminster, London :

Organisations who are committed to transforming the lives of people with dementia and their carers.
The Dementia Action Alliance is a movement with one simple aim: to bring about a society-wide response to dementia. It encourages and supports communities and organisations to take practical actions to enable people to live well with dementia and reduce the risk of costly crisis intervention.
It was an honour for us both to speak and close a very informative conference. It was very emotional at the end when we had a standing ovation.
Great to catch up with friends such as Shibley Rahman, Keith Oliver, Chris Norris and Peter Ashley. It was good to finally meet Ken Clasper who actually gave me a lot of inspiration early in my diagnosis.
Our thanks to Sarah Tilsed for looking after us.

Our upmost thanks to all the great folk I’ve met this year, virtual and real ! Very sorry if I’ve forgotten to mention anyone above that maybe I should have.
Thank you to all the people that have listened to our story and hope changes might be made because of it.
A big thanks to all the people that have attended our Dementia friends sessions ( nearly 300 of you)
Last but not least, thanks to Dr.Shibley Rahman and Ian Donaghy for including us in their books.
‘ Living Better with Dementia’ and ‘Dear Dementia’
Thank you to all that have helped and supported us throughout the year.

Join our fight

There are those who listen and those that don’t or won’t !
I listen, I hear,
I hear it all, the end ,the near, and the far !
No one hears, no one listens, they just pretend,they do their duty !
All I hear, is the ridicule and the jeers !
No one sees ,all the tears 😥
they pretend to listen ,then turn away ,
I’d like them to be me ,for just one day !
The tears they flow, for no such reason
I wish they wouldn’t cos I can’t cope !
No man should cry ,such as I !
I sometimes wish I could die
Please look around you and See our plight,
Please step up, please join our fight

Young onset Alzheimer’s disease !

© chrisroberts.