What is ?As seen through the eyes of a London DEEP Gathering

In October 2018 members of the DEEP Network came together in London for a DEEP Gathering

What is DEEP? ....................................................... Page 1

‘Our unity is going to help us survive and thrive’ ... Page 3

The right to have a voice – ‘I want to speak please’ .... Page 5

Why and how do groups form? .............................. Page 7

What does a group in the DEEP Network look like?.......Page 11

Key ingredients of a group in the DEEP Network .... Page 13

Opportunity .......................................................... Page 19

A brief history of DEEP ........................................... Page 21

DEEP website ........................................................ Page 23

Our DEEP news ...................................................... Page 24

The resources – reports, templates and much, much more to come .............................................. Page 25

The opportunities – taking part ............................. Page 27

Dementia Diaries ................................................... Page 29

Want to be part of the DEEP Network? ................... Page 30

Wendy Mitchell captured the London gathering .... Page 31

The future ............................................................. Page 33

Contents page

Page 1 Page 2

What is DEEP?

DEEP stands for Dementia Engagement and Empowerment Project.It is NOT an organisation. It is a network of over 100 independent groups across the United Kingdom.

DEEP engages and empowers people living with dementia to influence attitudes, services and policies that affect their lives.

Voices of people living with dementia are setting the agenda –

‘What matters to us’

George Rook (who lives with dementia), from Shropshire, chaired the London DEEP Gathering.

You are DEEP, we are DEEP, it is our DEEP

““

Being involved and invited is a really important part of belonging to the group

““

Great Camden Minds

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‘Our unity is going to help us survive and thrive’

Our group is a peer support group for those living with a diagnosis of dementia. We meet to discuss issues with local relevance and to advocate for a more dementia friendly borough.

We are a dementia involvement group. We describe ourselves as a “friendly bunch”. Our aim is to:• Reduce the stigma of dementia. • Have a say in services and policies relevant to us.• Get peer support.

Company is everything“

“

““

We have a ‘family bond’

““

Our unity

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The right to have a voice – ‘I want to speak please’

It’s about our right to have a say, have a voice to influence what matters to us as people living with dementia

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Our rights

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Why and how do groups form?

We are social animals we need to function together

To accept you have dementia can take a long time. We might encourage people to come and to begin with you think ‘Why would I?’ But we have a long-standing relationship from now on

I was housebound for so long trying to come to terms with my dementia. The group has given me the confidence to ‘come out’

“ “

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Why and how do groups form? continued

You can talk to people in the same situation and not feel embarrassed

There is an honesty and we don’t let people get away with stuff

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““

“ Busting the stigma of dementia

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What does a group in the DEEP Network look like?

We are all different!

BUT

Each group commits to the engagement and empowerment of its members.

We all have the power to influence, and change what happens in the dementia world: in our home, or street, our town or our country.

You never meet there and go home without a smile

““ The positive feeling stays for so long ““

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Key ingredients of a group in the DEEP Network

Anchor Respect

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Key ingredients of a group in the DEEP network continued

Humanity Our voicesI said listen to me...

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Key ingredients of a group in the DEEP network continued

Influence Love

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Opportunity

Now I know what I say, and think is important, and I can change things for me and for everybody else getting a diagnosis

Together we create golden moments and opportunities ““ ““

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A brief history of DEEP

DEEP started as a one year project. 17 groups and activities were counted by the end of that year.

From 2012-2015, the DEEP network started to take shape. Groups were supported to be in touch with each other – to share ideas and good ways of working.

A national user movement of people with dementia was being built. By the end of 2015, there were 50 groups.

In 2019 there are over 100 groups in the UK wide DEEP network.

DEEP is hosted by Innovations in Dementia. Thank-you to our funders: Dream DEEPLY

www.dementiavoices.org.uk

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DEEP website

Our website provides the opportunity:

• To find and connect with groups across the UK

• Share information

• To take part

• Keep up to date

• Be part of a national network

Our DEEP News has been designed by people within the Network.

It is all about Our Voices, Our stories!

Groups say it helps to create a ‘sense of belonging to something bigger’ when the newsletter arrives.

‘It helps us all to stay connected and up to date.’

Our DEEP news

Our DEEP Views and Latest N

ews ..Page 2

Meet a DEEP Group .............

..........Page 3

Virtual Support Groups ......

...........Page 4

The Newsletter from the U

K

Network of Dementia Voices

Contents: Regional Updates and News .... Pag

e 5 & 6

Scottish Gatherings ...........

........ Page 7

Closing Remarks and Conta

cts ... Page 8

June/July 2019

Achieving the impossible ….o

r is it?

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“

So often dementia support i

s

about our past, but DEEP fe

els

like the present and the fut

ure

Quote from DEEP Scottish Ga

thering

A special shout

out and Happy

4th birthday to

the SUNshiners!

Are you looking closely at th

is picture? Do you

think that the photograph h

as been altered to

make it look as if Hugh is flo

ating in mid-air?

Jill Pay is one of the facilitat

ors of Great Camden

Minds. She took this photogr

aph of group member

Hugh at his request.

What amazing physical stren

gth! We can assure you

there are no wires or tricks!

So, is the impossible really im

possible after all? DEEP

– which means all of us – is a

bout the present and

the future being positively po

ssible!

It has been a really busy tim

e in the Network. There

have been Gatherings in Sco

tland and Kent. There

have been lots of meetings

planning even more

impossible things hoping to

make them possible.

Our DEEP Views ...........................Page 2Meet a DEEP Group ...................Page 3&4Regional Updates and News ......Page 5&6

The Newsletter from the UK Network of Dementia Voices

Contents:

DEEP in Dementia Diaries .......... Page 7Closing Remarks and Contacts ... Page 8

January/February 2019

Happy 2019!! For many of us it is a relief to bounce back into action after a long break over Christmas and New Year!There is a slight change of support to you from the DEEP Coordinators. Paul Thomas will be concentrating on supporting the DEEP network in Scotland. Rachel Niblock will be the point of contact for all groups in England, Wales and Northern Ireland. Please do not hesitate to contact them or use the brilliant resource of yourselves in the network. Please keep sharing your news! February sees the launch of the brand new DEEP

Website which we hope will help you to find more information about all of the groups (please make sure you keep your pages up to date and you can now add files, photo, reports and resources from your group).This month sees a really exciting special edition ‘Capturing the story of DEEP’ – we hope you enjoy and it inspires! Go gently amid the noise and the haste DEEPERS.

Happy 2nd Birthday Buddies, Leamington Spa!We can’t believe we are 2years old! Who’d have thought from Ken Howard’s inspired idea that we would be two years and going strong.

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STOP PRESS: We will be hosting monthly Webinars with the DEEP Network

WE will share details across the network by email and through social media.

Our DEEP Views ...........................Page 2Meet a DEEP Group .......................Page 3Regional Updates and News ......Page 4&5

The Newsletter from the UK Network of Dementia Voices

Contents:DEEP Dilemmas ........................ Page 6DEEP in Dementia Diaries .......... Page 7Closing Remarks and Contacts ... Page 8

February/March 2019

Is it too early to say Welcome to Spring?

Caring and sharing are always two words that come to mind when talking about the DEEP Network. The generous and humble giving of self and to each other.The new DEEP Website provides the opportunity to share what you are doing by telling of your adventures and activities. From a museum audit in Belfast to an audit of Public Libraries in Brighton. At our recent London DEEP Gathering Tony Husband captured the observation that we are all social animals who are driven to belong, share and care.Together we have the strength to challenge and change what is not right. It is indeed our right!Go rightfully DEEPERS.

A January lamb at Gorfenna in Cornwall

www.dementiavoices.org.uk

• Opportunities in Taking Part• Latest News • Keep your news and

activities alive by sending us items for your group page

• See what other groups are doing

• Reports and resources• DEEP Guides

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The resources – reports, templates and much, much more to come

The DEEP website contains many resources, including guides, templates and ideas. They aim to support everybody to enable people with dementia to have a voice. These resources have been created with and by people living with dementia.

The Gathering reports reflect the richness of activities that take place with the Network. They are there to show what is possible.

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The opportunities – taking part

People with dementia in the driving seat of research

Putting people with dementia in the driving seat.

Dementia Enquirers is a DEEP project. It is aiming to develop a new approach to research, or ‘enquiry’, that is led and controlled by people with dementia. It will support around 20 DEEP groups in conducting their own research projects. It will explore with people with dementia, the lessons that emerge from their work. This learning will be widely shared.

Dementia Enquirers is funded by the National Lottery Community Fund.

Taking Part.

All opportunities that we receive are available on the Taking Part pages of the DEEP Website.

Please encourage everybody in your group to keep an eye on these pages … who knows what will come up?!

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Dementia Diaries

Thank you for your interest in becoming part of DEEP - The UK Network of Dementia Voices

www.dementiavoices.org.uk@DementiaVoices

Registration form to join the DEEP Network

DEEP is part of our identity now. We feel part of a bigger voice, amovement, that we’re stronger together.

DEEP group

Details on how to join the DEEP Network

www.dementiavoices.org.uk@DementiaVoices

Dudley from Memorybilia in Kent says:

‘I really struggle to make it sound like a ‘must-have’ – but IT IS!These groups are my thing and there aren’t enough of them’

Thank you for your interest in becoming part of DEEP - The UK Network of Dementia Voices

Want to be part of the DEEP Network?

Hear from the voices of people living with dementia. People call and record their thoughts and feelings for all to hear. The voices are real, human, wise, raw and very often emotional. Anybody can listen and many feel supported, educated and moved by their experience.

www. dementiadiaries.org

The DEEP Network welcomes new groups to join.

We need a commitment from you to:

• ensure the voices of people in your group are in the driving seat.

• share what you do so everyone can benefit

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Wendy Mitchell captured the London gathering

Last Friday there was an amazing gathering of DEEP groups from the London areas and invited me to attend.

We used an unloved copy of Charles Dickens, “Great Expectations”, from a charity shop and turning it into a way to get everyone to speak at the beginning of the event.

Each person had to say their name, where they were from and then choose a word that was special to them from their page of the book. Over lunch, and due to the noise being a tad overwhelming for me, I went into my own little world and wrote the poem there and then.

Here it is:Carry a notebook to write your thoughtsTo rage and rampageAnd not be aloneThe Hope Love and RespectThe opportunity dementia brings

But still with a splendid smileOf joy and peaceA curious opportunityTo share ideas, knowledgeAnd simply to understand

When faced with objection & unmanageabilityThe immensity of humanityThe beauty and forgiveness shines throughThe guardians, the spirits In their communicative way

Ask ‘Do we remember’?That new chapter in our lives?Then something stirs, our guardian angel reminding usThat, after all, we’re still the same person

Still a mum fulfilling Communicating ideasInfluencing, forgiving othersWith patience, respect and loveAfter all, we’re still the same person

Wendy Mitchell London, October 2018

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The future

DEEP is part of our identity now. We feel part of a bigger voice, a movement, that we’re stronger together

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With special thanks to:

Great Camden Minds

Lewisham Dementia Advocacy Group

City Mission

George Rook

Wendy Mitchell

Fran Hamilton

Tony Husband (Cartoons)

Paul Husband (Photographs)

And everybody else who came and contributed to the day.

And:

Enormous thanks to the hundreds and thousands of voices of people who are all ‘DEEPers’ who have, since 2011, built where DEEP is today.

“ “

@DementiaVoices

www.dementiavoices.org.uk

Rachel Niblock Coordinator for the DEEP NetworkEmail: Niblock@myid.org.uk Mobile: 07720 538851

For more information please contact:

Publication date August 2019