Category: Dementia

Poetry – Never claiming an easy life with Dementia,

Showing there is a life after a diagnosis of Dementia,

Within the decreasing limits of this disease,

Never claiming an easy life with Dementia,

Pushing back at the stigma and ignorance.

 

Forced Disablement,

Receiving Dehumanisation,

When there should be enablement,

And also rehabilitation.

 

Getting berated at every turn,

By some professionals and their rage,

Who only see Dementia,

At the Palliative stage.

 

By a media that uses fear and dread,

To increase their sales and clicks,

Not considering the harm and damage,

That there greed will inflict.

 

Showing there is a life after a diagnosis of Dementia,

This has now become a crime,

Never claiming an easy life with Dementia,

As it just gets worse over time.

 

Copyright © Howard Gordon 2019



 

In The Blogs – March 2019

THE VALUE OF BEING INVOLVED IN RESEARCH | ROADMAP

Social Care Workers in Scotland Put Up With Unfair Conditions

THE PRODIGAL SON IN DEMENTIALAND

Text Format – My Dementia Style

Dementia Friendly Communities

Staying proactive when all you want to do is sleep!

Dementia Friends sessions in schools

RECOGNISING CHRISTINE BRYDEN ON INTERNATIONAL WOMENS DAY

International Womens Day 2019

Fake news: lies, damned lies, and statistics

Do you want our money?

2019 presents more problems!

WHEN YOU SEE WHAT YOU EXPECT TO SEE IN DEMENTIALAND

Another day in the Surreal world…..

Care partner struggles alone without support of loved one’s adult children

Journeying through Dementia Designing Post Diagnostic Support with People with Dementia

How to…Reduce and Manage Delirium

Desperately Seeking a Good Care Home

Root And Branch Reform Of Social Care Needed

@TheKingsFund, @HealthFdn and @NuffieldTrust Warn of Urgent Need to Tackle NHS Workforce Crisis

Dementia Bereavement

Live Diary performance…….

Dementia in Australia

Both/And

CELEBRATING WRAD 2019

INVISIBLE, BY PAUL HITCHMOUGH

Finally…….Skydive Saturday happened…

THE PRESENT MOMENT IN DEMENTIALAND

20 questions to ask when someone living with dementia “resists” or “refuses” care

Young Dementia UK…….

The second day in London……..

Mr Kipling’s general practice



 

In The News – March 2019

Rights

Theresa May to consider axeing Human Rights Act after Brexit, minister reveals

Disabilities Minister won’t be replaced until after Brexit ‘turbulence’ resolved, says Tory vice-chairman

Pathways from poverty: The future of the DWP

Court’s intervention to limit options is not a deprivation of liberty

Tory Vice-Chairman says there will be no Minister for Disabled People until Crisis Resolved

Woman with Down’s syndrome ‘loses independence’ after being stripped of free bus travel

Tory council set to force disabled people into residential care to cut costs


Mental Capacity (Amendment) Bill

Further fire directed at Mental Capacity Act (Amendment) Bill

New analysis highlights ‘deeply flawed assumptions’ behind Mental Capacity (Amendment) Bill

Care homes ‘ill equipped’ to carry out new responsibilities under DoLS replacement system, warn providers


DWP

Capita assessor lied about woman’s thoughts of suicide, recording shows

Man slams ‘ridiculous’ benefits system after winning third DWP battle in six years

Jack Carroll: ‘I was treated with derision and suspicion in my PIP assessment’

Jodey Whiting petition: Lib Dems back petition, but doubts over Labour

Tomlinson silent after ‘lying’ to MPs about benefits freeze

DWP’s latest confession on safety: ‘We keep no record of complaints linked to deaths’

Jodey Whiting petition: Seventh family demands justice over DWP benefit deaths

Jodey Whiting petition: DWP ‘has blood on its hands’, says Green party

Six families back petition to MPs calling for inquiry into DWP benefit deaths

NHS call for government action on link between mental distress and benefit cuts

DWP silent on figures suggesting ‘fit for work’ deaths may have fallen

DWP handed petition of 200,000 names on benefit assessment travel

Reaction to Rudd’s reforms: Tinkering, crumbs and fears of a Trojan horse for cuts

Jodey Whiting: DWP apologises, but no word on preventing future deaths


Social Care

Social care ‘national scandal and disgrace’

Social Care: Government urged to match words with actions

County councils urge government to ‘look again’ at social care funding formula

Cross-party group launched to tackle social care crisis

The NHS apprenticeships offering a new route to health and social care

Tory council set to force disabled people into residential care to cut costs

CQC admits one in five social care services have not been inspected in two years


Studies

Failed Alzheimer’s trial leaves families and patients heartbroken. Medical community reels

Dementia sufferers will trial a cannabis-based medicine that could ease symptoms


Other News

Claims of maggot-infested genitals in nursing home

Letters: hospital no place for those with dementia

Proposed new definition of Alzheimer’s aims to spot disease sooner

‘Dementia is the plague of our time, the disease of the century’

Brexit has ganged up with Alzheimer’s against my mother

Disabled peer criticises Lib Dem leader over support for ‘discriminatory threat’


I do not endorse all the comments in these articles. nor do I receive any inducements from publishers or authors and may include some articles, solely to generate some discussion.



 

Sunday Musings – 31 March 2019

I’ve been on my travels this week to London and Milton Keynes.

For three days I was able to give the appearance of some normality but the rapid use of my cognitive reserves told by Thursday.

We choose to put up a façade of normality as a sort of comfort blanket for ourselves and our families and talk about what we can do, not to belittle the experiences of others but to offset the abusive stigma that we face that can lead to disablement at the point of diagnosis and beyond.

Behind closed doors, the reality of living with Dementia takes over, it’s no party, I can tell you, mourning for a life that is slowly disappearing, losing control of who we are and being challenged by the person we are becoming.


The Brexit Smokescreen

The smokescreen of Brexit continues, passed the 29th March, as while MPs and the media focus on Brexit, more important concerns such as poverty, disability and rights are pushed ever further to the back of their consideration and action.

Since Sarah Newtons resignation as the Minister for Disabilities, no one has been appointed in her place, leaving a vacuum in Government for the representation of people living with disabilities.

Tory Vice-Chairman says there will be no Minister for Disabled People until Crisis Resolved

The situation is further exacerbated by the Shadow Disabilities Minister, Marsha De Cordova, who seemingly talks more about what she is doing in Brixton than the potential rights abuses of the Mental Capacity (Amendment) Bill and the rights of people living with disabilities under the United Nations Conventions.

 

 

 

 

 

 


The Secret Facebook Group

I liken the House of Commons to a secret Facebook group, cut off from the rest of Facebook.

Anti-Democratic, anti-rights, anti anything that doesn’t fit with their own personal self interest.

I also liken the leaders of the Political parties to Neville Chamberlain, appeasers, waving their order papers and scanning their mobile phones in the chamber whilst,appealing to the majority of their party and big business,  oblivious as the anger of people on both sides of the debate rises.

Also to Nero, fiddling with indicative votes whilst Democracy burns a slow death in the UK.


The Future

We need the unifying words of Churchill and the Social conscience of Lloyd-George.

Not the aggressive policies of Thatcher and Attlee who used force to further their interests.

As in 1945, we need a Caretaker Government, a Government of National Unity with a cabinet from the four corners of the Union to re-enfranchise the people of the union.

We need a Carbuncle to fight the disease of self interest and anti-Democratic, anti-rights, anti anything democratic.

To elect MPs that have long left behind the infant school playground and have learnt the skills of debate, compromise, democracy, social conscience and to be held to account by their local party.

Who listen and act on the concerns of the people they represent, thereby upholding their rights and the democratic principles they serve.

To once again be the servants of the people not their own, big  business and their National Party’s self interests.


The Oxford Living Dictionary defines a politician as either:

1 A person who is professionally involved in politics, especially as a holder of an elected office.

1.1 A person who acts in a manipulative and devious way, typically to gain advancement within an organization.


Vacuum

The way the House of Commons conducts its business currently is leaving a political vacuum that the far-right and far-left are waiting to fill.

We only have to look back 100 years or so to the history of the 20th Century to realise that there may be a Lenin or Hitler, waiting in the wings, with their final solution to the Constitutional crisis that we now face.

Like Dementia, their rise to power over the individual is insidious, until one day they take control of us, stripping us of all humanity and choice.


Nominations for the National Diversity Awards 2019

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You can nominate here


Other Nominations

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

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


Consultations

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

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

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

New General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


Survey

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

Tell us your experience of living with Dementia

Sheffield CCG – Urgent Care Review 2019


Videos


Newsletters

Alzheimer Europe

LEAD Coalition


Blog

“In Shropshire last year the DAA carried out a survey of experiences of people living with dementia and their unpaid carers. The areas of greatest concern were experiences of care in general practice and in hospitals.

So Shropshire Telford and Wrekin Dementia Action Alliance is concentrating on GP practices this year to get them to become dementia friendly, or at least start.

Here are some dos and don’ts for practice staff. No doubt you can add more…”

George Rook’s blog titled Mr Kipling’s general practice


New Resources

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia



 

 

 

 

This Week on Dementia Diaries – 30 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:

 SKY DIVE SATURDAY FINALLY ARRIVES FOR WENDY – PART ONE

THE HAPPY TANDEMER REFLECTS ON A BUSY WEEK AND SOME GREAT NEWS.

DORY REFLECTS ON THE THINGS SHE HAS DONE SINCE HER DIAGNOSIS THAT SHE HAS NEVER DONE BEFORE – LIKE GOING ON A BIG MARCH IN LONDON!

JACQUI ON THE NEED TO HAVE GOOD NOTICE OF APPOINTMENTS.

SKY DIVE SATURDAY FOR WENDY – PART TWO

RAE IS TIRED AFTER A WORRYING NIGHT.

MELVYN IS DISAPPOINTED IN A LACK OF PROGRESS FOLLOWING AN AUDIT OF A VENUE.

JACQUI IS GETTING GREAT RESULTS FROM BEING CREATIVE.

WENDY HAS BEEN INVITED TO HOUSING 21 TO ENCOURAGE NEW DEMENTIA DIARISTS

THE HAPPY TANDEMER SAYS A BIG ‘THANK YOU’ TO DEEP.

STEPHEN HAS BEEN REALLY BUSY AND REPORTS ON A GREAT DAY AT THE LOST GARDENS OF HELIGAN.

JACQUI REPORTS ON THE FINAL MEETING OF THE DEAR GROUP.

WENDY SPEAKS TO SUE ABOUT WORKING AT HOUSING 21.

LATEST NEWS FROM ANTI GLENDA

HOWARD IS ALSO AT HOUSING 21 TO ENCOURAGE NEW DIARISTS

 


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.



 

National Diversity Awards 2019 – Nominate Patrick J Ettenes

Nominations for the National Diversity Awards 2019 are now open.

PETTENES-NDA2019

Patrick J Ettenes is a member of of the 3 Nations Dementia Working group, Steering Group and founder at LGBT Dementia Network, working in Manchester and Brighton.

Having faced both HIV and dementia alone, Patrick Ettenes doesn’t want others to do the same.

At the age of 33 years, Patrick has already been through more than many people ever do.

Patrick, a gay man living in Manchester, is originally from Barbados but came to England to escape prejudice and discrimination.

Early last year he was diagnosed with frontal lobe atrophy. It was the latest chapter in a story that began more than 12 years ago.


Nominate

You can nominate here



 

National Diversity Awards 2019 – Nominate George Rook

Nominations for the National Diversity Awards 2019 are now open.

GeorgeRook-NDA2019

George Rook is the Chair of the 3 Nations Dementia Working group, Steering Group and Chair of the Shropshire Telford Dementia Action Alliance, diagnosed with Mixed Dementia at the age of 63.

Although George Rook, from Ellesmere in Shropshire, was certain that he was experiencing symptoms of dementia, he felt he had to struggle to receive a full diagnosis.

George had left full-time work as a school business manager and took on a part-time role at the British Red Cross in Shrewsbury. Part of this involved raising awareness about health services, and this led to him playing a central role in setting up Shropshire Dementia Action Alliance.


Nominate

You can nominate here



 

National Diversity Awards 2019 – Nominate The 3 Nations Dementia Working Group

Nominations for the National Diversity Awards 2019 are now open.

3NDWG - NDA2019

The 3 Nations Dementia Working Group have been nominated for the Community Organisation Award.

The 3 Nations Dementia Working Group are run by a Steering Group of 12 people living with Dementia supported by the Alzheimer’s Society and are a friendly group of people diagnosed with dementia who want to make a difference whilst they still can.


Who are they?

We are a small group with big ambitions and we hope to do the following:

  • Bring the lived experience as experts with our personal knowledge of dementia that people value whether in a professional or non-professional capacity. As such our aim is to become the ‘go to’ group within the three nations (of England, Northern Ireland and Wales) for anyone seeking input from people with dementia.
  • Continue to contribute to society, to give value, advice and information where required and requested.
  • Help each other through mutual support, friendship and understanding.
  • Help all those affected by dementia. We understand what you are dealing with.
  • Help those who are trying to help us (such as policy makers, service providers, academics, researchers, businesses).

Nominate

You can nominate here



 

Book Club – ‘Dementia is the Plague of Our Time, the Disease of the Century’

what-dementia-teaches-us-about-love

Dementia, from a daughter’s perspective.

In an extract from her new book “What Dementia Teaches Us About Love” in the Guardian Newspaper, the Observer journalist Nicci Gerrard, remembers her father’s dementia and death, and reflects on the disease’s impact on society.

Discuss…

You can read the article here



 

Changes to Parson Cross, Sheffield, Memory Cafe

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.