Sunday, 2 December 2018

Living Well with Dementia: Are we Trivialising Reality?


I’ve always been concerned with the narrative of living well with dementia that comes from organisations and from so many who are not actually living with dementia, but commenting from afar.
I suppose my personal views over the last few years have been quite unpopular.
My Mum lived with dementia as well as she could. And I cared for my Mum as well as I could.
When I first started campaigning whilst caring for my mum, so many people shared their honest and open experiences with me celebrating both the beauty of care and caring, and the struggles in equal measure. Many shared their experiences on my original blog and now via our Dementia Carer Voices project.
Many people still share, but privately now rather than as a public viewpoint. And the reason is often very similar:
‘I don’t want to share my story publicly as I might look like I am failing personally or failing the person I am caring for.
‘All I hear is the narrative from so many that I should be living well, that nothing should change, so to share my experience is a story of failure.’
I also believe that, until we readjust the narrative again to support people to share their stories, inadequate support and understanding will be in place to help people live as well as they can at home, in care homes and in our communities.
So much pressure was put on people a few years back to say that they were not sufferers but living well, that a reality has almost been ignored.
My Mum, like many, would not like to be described as a sufferer. Although Mum often suffered, as I did often to witness, I can’t say that we lived well. I can’t say I read about living well in the letters I have received (this link will take you away from our website) or  the stories I have heard from the 160,000 people I have met in person on tour.
We lived as well as we could living with dementia and caring for each other.
It is time for a rethink on the living well with dementia narrative and marketing, to living as best as we can.
If we truly listen and support people to feel empowered and to share what matters to them, then all of us can live as best we can.
Time to change the narrative?
This son most certainly thinks so.

Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Thursday, 2 August 2018

Celebrating People, Places,Approaching 19,000 Pledges to Make a Difference

Celebrating People, Places, approaching 20,000 Pledges to Make a Difference


                         

The Dementia Carer Voices team would like to say a huge thank you to everyone who has made a pledge, and everyone we have met along the way so far on our You Can Make a Difference campaign. We are absolutely delighted to have now received more than  19,000 pledges!


This is a wonderful milestone to reach and would not be possible without the commitment and passion of everyone who attends our talks, reads about our campaign and pledges to make a difference to the lives of people with dementia and their carers. We have reached over 130,000 people across more than 700 talks and have met so many remarkable people so far.
These more than 19,000 pledges are from a personal perspective so each of them is unique and from the heart. More than 19,000 people have stopped and reflected on what they can do in their lives to make a difference. And no matter what your role, everyone has the potential to transform the lives and experiences of people with dementia and their carers, often in seemingly small ways.
We are really proud to be able to work with the Chief Nursing Officer for Scotland Professor Fiona McQueen and the Chief Nursing Officer for England Professor Jane Cummings you away from our website), sharing key messages from both and feeding back on the aims and outcomes of the people we have met.
You can read all of the pledges we have received so far on our website, as well as our pledge case studies, most recent publication and 5 Steps to Change resource.
The campaign will continue throughout the year. If you have been inspired to make a pledge yourself, you can email us at dementiacarervoices@alliance-scotland.org.uk We’d love to hear how you plan to make a difference!
Commenting on this huge milestone, our UK Lead Tommy Whitelaw said that

‘it has been a remarkable experience meeting so many inspirational people who do so many incredible things. We are inspired by the pledges and how people have been turning their good intentions into purposeful action.”
ALLIANCE Director Irene Oldfather added that

“these 19,000 pledges demonstrate Dementia Carer Voice’s ability to create a social movement for change by raising knowledge, understanding and awareness of living with dementia whilst promoting person-centred rights-based care to enhance the lives of people living with dementia.”
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Master Pledge Page





August 2018









July 2018







24/07/18 Northumbria University Nursing Leavers Conference






June 2018









May 2018














April 2018












March 2018














February 2018



06/02/18 Craigielea, People, Pledges, Music, Wishes and Life Stories


16/02/18 Portsmouth Hospitals Launch Pledge Tree


20/02/18 Queen Margaret University, Nursing Students Add Pledges


21/02/18 Abertay University open sessions


28/02/18 The Midlands and East Region LCAV Conference Delegates Add Pledges


 






January 2018










December 2017



















November 2017



03/11/17 Portsmouth Hospitals NHS Trust 

06/11/17 Aberdeenshire Health and Social Care Partnerships

07/11/17 New College Lanarkshire

08/11/17 Care at home teams Livingston 








October 2017




04/10/17 City of Glasgow College Pledge to Make a Difference








25/10/17  NhHS Borders District Nursing 
26/18/17 Stirling University 3rd Year Nursing





September 2017



















August 2017











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June 2017












May 2017















April 2017










March 2017















February 2017










January 2017













December 2016












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August 2016








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March 2016














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December 2015













November 2015













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August 2015









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March 2015


















February 2015











January 2015














December 2014







15/16.12.14 Norfolk and Suffolk






November 2014



03.11.14 Online pledges

07.11.14 Burton Hospital

13.11.14  Pledges of the week



24.11.14 The Retreat York





October 2014



13.10.14 More Pledges








27-30.10.14 NHS Highland Tour




September 2014



01.09.14  Teesside University
















August 2014











July 2014









June 2014



3/4.06.14 NHS Conference








27.06.14 BCDA Birmingham





May 2014 











April 2014




(08 -10).04.14 NHS Dumfries & Galloway 








March 2014











February 2014










19.02.14 NHS Fife










January 2014



We began the campaign by asking “What does caring mean to you?”



Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “ No – one ever asked   ” highlighted the transformational impact that ...