1. Co-ordinators – North UK Paul Thomas South UK Rachel Niblock
Co-ordinators – North UK Paul Thomas
South UK Rachel Niblock
JRF

2. Working independently in partnership
£1.1 million
People who live with Dementia have the expertise to influence society’s approaches and attitudes.
Making Change Happen.
Working independently in partnership
Human Rights of People Living with Dementia

3. “If I could just do the things I am used to doing I would get better” Hospital Ward

4. Mindfulness by Ronald “Russ” Russell (1924-2016)
I think I’ll go and urinate
To ease my troubled mind,
But as I stand to face the seat
What do you think I find?
Upon the ledge beside me
There sits the book I seek……
I must have brought it in myself
When last I took a leak.
What can I do to rectify
This failure of my brain?
Should I consult a doctor?
He might think I’m insane….
And that’s a risk I cannot take
So what else might I do?
I could go to an evening class
And learn a thing or two
About the workings of the mind
And how I ought to think;
How I should train my faculties
What’s best to eat and drink
To fortify my memory
So nothing will be lost
Then I will lead a better life For a minimum of cost.
Mindfulness by Ronald “Russ” Russell ( )
I had a brilliant memory
I kept it in my head,
I found it very useful
It stood me in good stead.
But now alas, I have to say
There’s been a dreadful change
My memory has buggered off
And left me feeling strange….
Wherever did I put my book?
I left it on that chair
Of that I’m certain, but I see
The damn thing isn’t there!
Some interfering person must
Have tidied it away,
Frustration’s taken over
And disembowelled my day….

5. England 58 Wales 11 Scotland 10 Northern Ireland 3 Eire 1 National 2
DEEP Network in UK
Over 80 groups
England 58 Wales 11 Scotland 10 Northern Ireland 3 Eire 1 National 2
Post Diagnostic Support - Young Dementia - DEEP Guides – GP Reviews
Videos - Dementia 20:20
Doing Dementia Differently
Our Dementia Our Rights – Dementia Strategies

6. Why is DEEP important?
People with dementia are increasingly sharing their views about living with dementia
By working together, people can have their views heard at a
higher level
People with dementia are setting the priorities about
the issues they find important
“we used to do things TO, then we did things FOR, then we did things WITH, now we are seeing things done BY people living with dementia” CEO Alzheimer Society 2016.

7. What has been the impact of DEEP?
“Being part of a network gave our members the confidence that they have a
right to have their voices heard” from a DEEP group
• Local influencing work - writing books, creating dementia, friendly communities, training local professionals, raising awareness,
developing technology, being on local TV and radio
• Helped to develop national policy and guidance
• Created a national campaign about language and dementia - “Dementia
Words Matter”

8. • Helped conference organisers to become more dementia friendly
• People with dementia feel they have a sense of purpose. They feel
valued for the work they are doing. Their skills and experiences are
being used. People say they feel more confident and have more self
Esteem. DEEP is changing the social and policy context for Dementia, for us all.

9. UK Network of Groups and Individuals Over 80 groups across UK
Local, Independent, and facilitated by larger organisations e.g. NHS Trusts, Local Authorities, National Government, Universities
DEEP Network connects individuals and groups locally and across UK
Empowers people to influence policy, attitudes and practice
Lesser heard voices – Care Homes,
Justice System, Learning Disability.

10. DEEP Network is free and easy to join
Adds value to groups and organisations
Empowers and connects people
DEEP will support project work though involvement (e.g. Police) and Funding.

11. A Human Rights Based Approach.
The Human Rights Act
UN Convention on Rights for People with Disabilities
The Right to Dignity and Respect
The Right to live where you choose
The Right to Family Life
The Right to take part in your Community
The Right to be free from Degrading Treatment
Human Rights are a strong Framework for Person Centred Support.

12. Often the emphasis is on resources and finances but
really good support can be delivered in a poor environment and abuse can be delivered in high quality environments.
The difference depends of the observation of Rights, Respect for the Person and Values.
As Wolf Wolfensberger said in “Diagnosing Diagnosis” 1964
“The problem created might be very complex but the answer is usually very simple”

13. We have the right to live hopefully and be encouraged to do so
We have the right to be treated well regardless of our age or ability
We have the right to attend groups where we live so that we can give and receive support to each other
We have the right to receive APPROPRIATE support
We should all receive the same quality of support no matter where we live
We should all have the right to receive information and participate in research
We all have the right to be treated with respect
We have the right to have support to participate in society

14. So please, if you’re a professional, look for the positives, help us to live well and hopefully, and to participate in society; don’t write us off.
And if you are living with dementia, don’t give up. Keep doing the things that you make you feel good for as long as you can.
A DEEP Group Member

15. Our Dementia …Our Rights
Women and Dementia
Dementia Words Matter
Engagement and Activism
Dementia Diaries
DEEP Guides

16. When you‘re in your eighties, You’re treated with respect,
Consolations by Ronald “Russ” Russell ( )
When you‘re in your eighties, You’re treated with respect,
Folks think you’re full of wisdom, (that might not be correct)
But when you get to ninety , They put you on the shelf,
It doesn’t matter what you think, Just keep it to yourself.
Now God of course is different,, Aloof from human cares
He simply ticks his register, Each time you say your prayers.
Yet one small corner of his heart, He sets aside for those
Embarking on their tenth decade, For they’re the ones he knows
Have fought the fight and come up trumps, Kept Father Time at bay,
(Helped by a load of pills and drops, Devoured every day).
So when you meet an aged crone, Or some old bearded loon
Remember they are God’s own folks, As you’ll be…..all too soon.

17. March and April 2017 Conferences in Scotland
North Central Belt South
For People Living with dementia
By People Living with dementia
Planning meetings January 2017
People living with dementia

18. Nothing about us without us And from the “bottom” up
As Tommy Dunne said
“If you want to find out how to improve policy and practice, start by asking us”
Nothing about us without us
From the inside out
And from the “bottom” up

19. Innovations in Dementia
Thankyou
@DEEP UK
@Paulpmtpmt
Innovations in Dementia