Links for the 3 Nations Dementia Working Group Twitter Chat Tuesday afternoon 4pm EST, Tuesday evening 8pm GMT and Wednesday Morning 7am AEDT – Topic “What is Social Care Currently Like for You?”

The next 3 Nations Dementia Working Group Twitter Chat is today, Tuesday afternoon 4pm EST, Tuesday evening 8pm GMT and Wednesday Morning 7am AEDT.

The Topic is:

What is Social Care Currently Like for You?

Affected by Dementia?

What’s your experience of social care?

Good or bad?

Easy to access?

Is it what YOU need/want?

Or what THEY want to provide?

Regardless of diagnosis, whether you are a person relying on Social Care or caring for someone needing Social Care, we would like to hear your views and experiences, good or bad.

For everyone else it is a chance to learn more about how Social Care affects everyday lives, You may not rely on Social Care now but in the future the chances of you needing support from Social Care increases.


Resources

What is Social Care

Dementia, social services and the NHS

Getting care and support

Sources of Dementia Support for Families

Assessment for care and support in England

What does the British public think about social care?

Dementia Tax – Should we have to pay for our own Social Care?

New campaign to recruit thousands more adult social care staff

North Ayrshire’s Health and Social Care heroes honoured at special breakfast

Women ‘paying highest price’ for Tory’s failure to deliver social care reform, charities say

Dementia patients being failed by social services, say GPs

Women ‘paying the highest price’ for failing social care system, says Age UK

‘It’s ludicrous’- council criticised over lack of care for man with dementia

Caring for those with a big heart

Dementia team short-listed for gov awards dementia

Everyone worries about getting older, but for trans people it can be terrifying

Statistics – Health and Social care



3 Nations Dementia Working Group

3NDWG1


Petition

The 3 Nations Dementia Working Group currently have a Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners. please read and then sign.


About Us

The 3 Nations dementia Working Group website is here


Join Us

If you have a diagnosis of Dementia and live in England, Wales or Northern Ireland, you can join us here


Contact Us

Our email address is 3NDWG@alzheimers.org.uk



 

Sheffield UK, Young Onset Dementia Support Group Tomorrow

Earlier in the year, I contacted Young Dementia UK about the lack of support for people living with Dementia under the age of 65 and their care partners and families in Sheffield.

Then I was on the interview panel that appointed a  Young dementia UK co-ordinator for Sheffield.

It is so important for people living with Dementia to be involved in developing new services.

I am pleased to tell you that YoungDementia UK is launching a new monthly group starting on the 16 January 2019 for people living with Young Onset Dementia who live in the Sheffield area.

It will take place every month at

Graves Health and Sports Centre
Bochum Parkway
Sheffield
S8 8JR

The 20th March group tomorrow will be at 1.00-3.00 pm

It is chance to meet new people, try new activities and access information about young onset dementia.

Download a poster about the group here.

For more information please contact our Group Coordinator, Natasha Wilson at natashawilson@youngdementiauk.org


Additional Funding

As Sheffield is our 4th largest city and it is quite a way from the north of the city to Graves Health and Sports Centre I am seeking additional funding for a second group in the north of the city.

Any kind soul reading this that may be able to help could contact Natasha for more information.


Note for Professionals and Organisations

I would hope that people receiving a diagnosis of Young Onset Dementia, would be referred by their Neurologist to the group, at the point of Diagnosis where appropriate, via Natasha Wilson.

Associated Health Professionals who identify someone who would benefit from being included should also refer people along with other medical professionals the council and other organisations.

Equality of treatment and services regardless of condition is a right set out under the The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

For more information please contact our Group Coordinator, Natasha Wilson at natashawilson@youngdementiauk.org



 

The 3 Nations Dementia Working Group Twitter Chat Tuesday afternoon 4pm EST, Tuesday evening 8pm GMT and Wednesday Morning 7am AEDT – Topic “What is Social Care Currently Like for You?”

The next 3 Nations Dementia Working Group Twitter Chat is tomorrow, Tuesday afternoon 4pm EST, Tuesday evening 8pm GMT and Wednesday Morning 7am AEDT.

The Topic is “What is Social Care Currently Like for You?”

Regardless of diagnosis, whether you are a person relying on Social Care or caring for someone needing Social Care, we would like to hear your views and experiences, good or bad.

For everyone else it is a chance to learn more about how Social Care affects everyday lives, You may not rely on Social Care now but in the future the chances of you needing support from Social Care increases.


Resources

What is Social Care

Dementia, social services and the NHS

Getting care and support

Sources of Dementia Support for Families

Assessment for care and support in England

What does the British public think about social care?

Dementia Tax – Should we have to pay for our own Social Care?

New campaign to recruit thousands more adult social care staff

North Ayrshire’s Health and Social Care heroes honoured at special breakfast

Women ‘paying highest price’ for Tory’s failure to deliver social care reform, charities say

Dementia patients being failed by social services, say GPs

Women ‘paying the highest price’ for failing social care system, says Age UK

‘It’s ludicrous’- council criticised over lack of care for man with dementia

Caring for those with a big heart

Dementia team short-listed for gov awards dementia

Everyone worries about getting older, but for trans people it can be terrifying

Statistics – Health and Social care



3 Nations Dementia Working Group

3NDWG1


Petition

The 3 Nations Dementia Working Group currently have a Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners. please read and then sign.


About Us

The 3 Nations dementia Working Group website is here


Join Us

If you have a diagnosis of Dementia and live in England, Wales or Northern Ireland, you can join us here


Contact Us

Our email address is 3NDWG@alzheimers.org.uk



 

Changes to Parson Cross, Sheffield, Memory Cafe from 25 March 2019

Exciting news from the Parson Cross Forum in Sheffield about new Memory Cafe’s

As part of our fantastic Unforgettable Me Project funded by The National Lottery Community Fund, we will be delivering 2 new weekly memory cafes here at Parson Cross-Forum, starting on Monday 25th March and Friday 29th March 9.30am till 11.30am.

Our new additional cafes will run all year round, excluding Christmas Holidays and Bank Holidays and will offer a great support network for people living with early onset dementia and their family members.

We will also be continuing with our very popular Forget Me Not Memory Cafe on a Tuesday morning 9.30am till 11.30am (term time only) funded by the People Keeping Well in the Community Southey Owlerton Partnership and SOAR.

Also funded by The National Lottery Community Fund, is our late stage dementia project JABADAO. This runs Monday’s (excluding Bank Holiday’s) 1pm till 2pm for people living with mid to late stage dementia and peer support for their carers.

Give us a call to find out more about this project.

Parson Cross Forum, 56 Margetson Crescent, Sheffield, S5 9NB. Call 0114 3279727, email louisec@pxforum.org or private message us here on Facebook to find our more.



 

Sunday Musings – 17 March 2019

The shame of the sad events at the Mosque’s in Christchurch, New Zealand on Friday, underpin how society is becoming more divisive.

In the 21st Century, people have become media victims, where their looks, thoughts and actions are being controlled and manipulated by a media, hell bent on selling copies and profits to the detriment of all.

They present a perfect human being, through looks, employment, hobbies, relationships etc that leaves no room for all the differences that make us all human.

They preach intolerance of how we look and act which spreads into other aspects of society such as race, religion and disability, leading to the hate of that which is different to their perceptions.

Nostradamus predicted that a Third World War would come from  the east and with the continued inequalities and intolerance in society it is not hard to imagine a time when those discriminated upon, turn against the haters.

Many civilisations such as the Romans, became preoccupied with looks and money to the detriment of those who didn’t meet society’s norms and those less able and look what happened to them.

Friday’s article The Times They Are A-Changin’ – Part 2 was an attempt to redress the balance of the stigma of some professionals and care partners, that question the diagnosis of Dementia at a younger/earlier stage.

These experiences of those professionals and care partners are undoubtedly negative, who mainly experience the negative side of Dementia through the emotions and emotional responses of the person they care for in the Palliative stage.

But there are three main stages to Dementia, early, middle and Palliative, like Cancer which has 4. You do not hear comments that someone with stage 1 to 3 Cancer, doesn’t have cancer because they don’t look like they have Cancer, they still work, drive, speak at events, campaign etc.

As with any chronic terminal disease, the challenges of each stage, differ and increase through the stages.

It has never been the intention of people living with Dementia to say that the perceptions and experiences of professionals and care partners of the Palliative stage are wrong.

However, because all you see in the media is the Palliative stage of Dementia, as I know from my own experience, that narrative has a disabling effect upon diagnosis and there is a need to redress the balance to show that a diagnosis need not necessarily be

The beginning of the end, but the end of the beginning with an earlier diagnosis.

That there may be a life to live within the reducing limits of a diagnosis, when diagnosed at an earlier stage.

That we do however recognise and even fear the challenges of the Palliative stage of Dementia.


Nominations for the National Diversity Awards 2019

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Other Nominations

You can nominate here

You can nominate here


Petitions

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

New Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP


Consultations

Consultation – Learning disability and autism training for health and care staff

New Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

New Study Title: Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1


 

Videos

Stephen Tamblin’s 44th Weekly Video


Poetry

Bitter Sweet Success……..Poem


Blog

“I first met James McKillop back in 2001, not long before the publication of his book, ‘Opening Shutters, Opening Minds’. We shared a love of photography and had a similar sense of humour. It was James who introduced me to the Scottish Dementia Working Group (or Working Party as it was called then).”

Alzheimer’s Society Scotland’s blog titled Journeying through Dementia Designing Post Diagnostic Support with People with Dementia


New Resources



 

This Week on Dementia Diaries – 16 March 2019

Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes.

Who are we working with?

We are all part of the Dementia Engagement and Empowerment Project (DEEP). The Dementia Diaries initiative was designed by the non-profit communications agency On Our Radar (www.onourradar.org). It was launched by On Our Radar in January 2015 in partnership with Innovations in Dementia, Ownfone and Comic Relief, and was handed over to Innovations in Dementia in August 2016.

Phase 2 of the project is funded jointly by Comic Relief and BIG Lottery Fund.

A team from Leeds Beckett University was asked to evaluate the success of Dementia Diaries. A dementia-friendly summary of their findings is available here (pdf, opens in a new tab) or you can download the full report here (pdf, opens in a new tab).

The website provides the audio recording and a written transcript of each diary, you can volunteer to transcribe the audio diaries here


This weeks Diaries include:

JACQUI IS IN HIGH SPIRITS AFTER HER TRIP TO BELFAST

STEPHEN WONDERS IF HE IS OVERDOING IT

DORY IS FEELING USED

LARRY READS TWO OF HIS POEMS THAT TOUCH ON THE SUBJECT OF LONELINESS

JULES’ THOUGHTS ON WENDY’S BOOK

JACQUI IS PLEASED ABOUT HER DAY

STEPHEN LOOKS BACK ON MEETING TONY ROBINSON

AGNES LOOKS FORWARD TO A BUSY SUNDAY

TRACEY’S THOUGHTS ON WENDY’S BOOK

PAUL’S THOUGHTS ON WENDY’S BOOK

RAE IS UPBEAT, AGAINST THE ODDS

MELVYN HAS BEEN READING THE DEEP NEWSLETTER

LARRY RECOUNTS HIS EXPERIENCE WITH PIP

JACQUI HAD A GREAT DAY AT THE MUSEUM IN BELFAST

GEORGE MUSES ON POSSIBLE NAMES FOR DEEP GROUPS

DORY’S THOUGHTS ON WENDY’S BOOK

MELVYN LOOKS BACK TO THE POEM HE WROTE FOLLOWING THE LOSS OF HIS DOG MAX

JACQUI IS GETTING READY TO BOARD A PLANE

RON CALLS FOR ACTION TO SECURE THE RIGHTS OF PEOPLE WITH DEMENTIA.

AGNES IS READY TO TALK ABOUT LIVING WELL WITH DEMENTIA

TRACEY WARNS OF A PHONE SCAM

GEORGE’S THOUGHTS ON WENDY’S BOOK.

JACQUI TELLS HOW SHE STRUGGLED A BIT AT BELFAST RAILWAY STATION

LARRY READS TWO POEMS ABOUT FRIENDSHIP

HOWARD TALKS ABOUT THE OPPORTUNITIES AFFORDED BY TECHNOLOGY

HOWARD SPEAKS ABOUT INTERNATIONAL WOMEN’S DAY


Note for Professionals

You can use these Diaries as part of your Dementia Training.

As a courtesy, please email Rachel Niblock at Niblock@myid.org.uk to let her know that you will be using some of the Diaries, it helps when applying for funding in the future.



 

The Times They Are A-Changin’ – Part 2

You may have noticed that since Christmas, articles in this blog have been less about me and more about information.

The reason for this is that since Christmas, I have been facing increasing challenges and my ability to write articles for this blog have somewhat diminished.

That is not to say that I will stop writing, I feel it is important to continue to post articles daily, to try to retain the skills required to do it for as long as possible.

I will continue to advocate through my work with various organisations and to challenge the negative aspects of Dementia.


On Monday, I was at Neurology and had an MMSE which showed my score had reduced by 3, although subjective and not huge in the scheme of things, but seemingly confirming that things have moved on.

I have been having hallucinations caused by geometric patterns, where the patterns or stripes move,

Increasingly foggy head,

Tiredness and fatigue,

Unable to focus on tasks,

Headaches,

Seeing rats and spiders,

Problems with balance,

Decreased sense of smell and taste,

Hyperacusis,

Problems typing on a keyboard, I may know what I want to type but my fingers do their own thing,

Recognising faces of people I have known,

Putting names to faces,

Problems reading,

Reaching for objects and missing them,

I have got lost in town several times recently,

Bumping into door frames,

The first night in my hotel room in Brussels in December, there was a full length mirror which I thought was a doorway to another room and as I walked past the mirror, I thought there was someone else in the room, I didn’t recognise it as a mirror to start with.

etc…


We are often criticised by professionals and carers for showing the positive side of living with Dementia when their experiences may be negative.

Well here I am showing that it is not all moonlight and roses.

I am not suffering, although there are days when I might suffer.

My Father showed me that even in the darker days, you can still be a fighter.

He fought Cancer for 27 years and I will fight Dementia for as long as I can.


 

 



 

The Times They Are A-Changin’ – Part 1

Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone.
If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changin’.

Come writers and critics
Who prophesize with your pen
And keep your eyes wide
The chance won’t come again
And don’t speak too soon
For the wheel’s still in spin
And there’s no tellin’ who
That it’s namin’.
For the loser now
Will be later to win
For the times they are a-changin’.

Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’.
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’.

Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is
Rapidly agin’.
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’.

The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
The order is
Rapidly fadin’.
And the first one now
Will later be last
For the times they are a-changin’.

Copyright © Bob Dylan 1963


3 Nations Dementia Working Group Twitter Chat Postponed

Owing to existing commitments of the 3 Nations Dementia Working Group, Steering Group members, the next Twitter chat will be next Tuesday, 19th March 2019, Tuesday afternoon 3pm EST, Tuesday evening 8pm GMT and Wednesday Morning 7am AEDT .

With the publication of the long term NHS plan and the perpetually delayed Health and Social Care Green Paper which is pencilled in for launch in April the next two Twitter chats are around Social Care.

The first topic will be: What is social care currently like for you?

So do join us on Tuesday, 19th March 2019 for our next Twitter Chat about Social Care.



 

The Great Yorkshire DEEP Gathering

Recently, I wasa in York where 8 or 9 DEEP groups came together to share their experiences, make contacts and to learn about projects such as the new Dementia Enquirers Project.

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In the morning we talked about the “Our right to get out and about” project which involved 3 DEEP groups from Bradford, Scarborough and York around Buses, Trains and the Blue Badge Scheme.

The project looked at rights and experiences of transport, where improvements could be made and the groups took action on blue badges for Dementia, trains and buses.

The Scarborough group talked about how they had campaigned locally and nationally to get invisible disabilities included in the Blue Badge Scheme.

Bradford group talk about blue badge campaign. no equal access across groups still and progress is slow, then we watched their video

The York Group talked about their experiences with trains.

There is assisted travel but barriers include rolling stock and unmanned stations, lack of awareness of passengers and transport staff  and driver only trains.

The aim of the project is to make change happen and looking for a positive outcome.

Tommy Dunne talked about transport in Liverpool, how it improves people’s lives, reducing isolation increasing activity and improving health and the work the local DEEp group is doing with Mersey Travel.

Then before Lunch, we took a look at the new DEEP website, have a look if you have not seen it yet.

After Lunch Ian Beesley talked about the Banners and Exhibition dates.

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Then Philly Hare, Wendy Mitchell and myself talked about the new Dementia Enquirers project…

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and about the new cartoon for the project…

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It was also good to see Julie Hayden there, who facilitates the new DEEP group “YODA” from Halifax, at her first meeting.

All in all, a great gathering of friends from the DEEP Groups