Una lettera a Eloisa Stella e al popolo italiano

Ciao Eloisa,

è stato bello incontrarti alla conferenza di Young Dementia UK a Birmingham e parlare del lavoro che stai portando avanti in Italia. Le persone che convivono con una diagnosi di demenza e i loro caregiver nei nostri due Paesi affrontano difficoltà analoghe.

Anche qui nel Regno Unito fa molta differenza il luogo dove vivi, in termini di servizi sanitari disponibili, supporto post-diagnostico e servizi di valutazione e riabilitazione.

Esistono oltre 100 tipologie di demenza e lesperienza di malattia di ognuno di noi è differente questo è il motivo per cui le diversità sono così importanti da cogliere.

È molto importante per le persone con demenza, per il caregiver e per i familiari ricevere un sostegno adeguato nel momento in cui arriva la diagnosi, perché questo può permettere loro di vivere una vita piena, nei limiti della diagnosi che ciascuno ha ricevuto.

È altrettanto importante eliminare lo stigma causato dalla diagnosi.

Non cè nessun motivo per cui ci si debba vergognare o sentire in imbarazzo quando si riceve una diagnosi di demenza, non si deve andare a nascondere.

Se riceviamo una diagnosi sufficientemente precoce possiamo ancora svolgere un ruolo significativo nella vita familiare, possiamo continuare a lavorare se ne abbiamo ancora le capacità, possiamo anche continuare a partecipare attivamente nella nostra comunità.

La demenza è percepita solo come sofferenza; era così anche per il cancro 40 anni fa. Oggi invece intorno ai malati di cancro cè molto sostegno: chi ha un tumore viene considerato una persona che sta lottando.

Non vedo lora di collaborare con te e con gli italiani, finché la mia demenza me lo consentirà, per contribuire a superare lo stigma, a cambiare il modo in cui la demenza viene percepita e a migliorare il sostegno ricevuto dalle persone con demenza, nel solco dei diritti riconosciuti dalla Convenzione delle Nazioni Unite sui diritti delle persone con disabilità.

Howard Gordon

Sheffield UK


Eloisa Stella è molto rispettata nel Regno Unito ea livello internazionale per il suo lavoro riducendo lo stigma e migliorando il supporto, i servizi e la riabilitazione per le persone che vivono con demenza e le loro famiglie.

In Italia è la c0-fondatrice di Novilunio.net


Petitzione

Appello al ministero dalla Federazione Alzheimer Italia: si finanzi il piano nazionale demenze

Piano Nazionale Demenze: Federazione Alzheimer Italia lancia una petizione

 


Il mio Blog

Il mio blog dove c’è un’opzione per tradurre i miei articoli in italiano qui


 

Risorse

Federazione Alzheimer Italia

I DIRITTI UMANI DELLE PERSONE CON DEMENZA: DA RETORICA A REALTA

Speciale Mese Mondiale dell’Alzheimer: L’impegno di Dementia Alliance International

Airalzh, Associazione Italiana Ricerca Alzheimer Onlus

Demenze, in Italia 1 milione di casi. Alzheimer, tre giorni di incontri promosso da Aima

Un contributo di Daniele Villani, Responsabile dell’Unità Operativa di Riabilitazione Neuromotoria e dell’ Unità di Valutazione Alzheimer, Casa di Cura Figlie di San Camillo, Cremona

Paziente con demenza, l’assistenza da parte dell’oss



 

Leaving the Dark Hole behind

Having finally Stepped Out of the Dark Hole the fight against the injustices following my dual diagnosis of Dementia and the continuing fight to live my life with my Dementia had begun .

In July, I attended The University of Sheffield’s Dementia Futures 2018 Conference a showcase for PhD students to present their Dementia research in plain English as a member of the South Yorkshire Dementia Research Advisory Group where we judged the on-stage presentations and the posters for their clarity for people living with Dementia.

Towards the end of July I attended the Global Disability Summit in London as a delegate and I wrote an article about my time their for Dementia Alliance International

I continued taking part in research My Research and The Angela Project – Improving the Diagnosis of Young Onset Dementia Study


One day in August, I put some eggs on to boil, yes reader, I know I’m not supposed to touch the cooker, but I was trying to help.

I went to the shops to get some milk and when I got back my wife told me that some cardboard boxes were next to the cooker and had caught fire, luckily my wife noticed before it took hold.

I wrote an article about The United Nations Convention on the Rights of Persons with Disabilities (CRPD) an important tool to fight against the abuses of people living with Dementia.

I continued taking part in Research including Sinage Research , Part 5 -The RADAR Alzheimer’s Research Study. and Technology Research

I was also in Birmingham for my second visit to Woodbrooke for a Dementia Diaries Meet Up


September was a busy month and brought World Alzheimer’s Month and on the 21st, World Alzheimer’s Day

On the 5th of September, The Mental Capacity Amendment Bill reached the committee stage a piece of legislation that could have a major impact on people living with Dementia.

During September I wrote about The Campaign to Ban BPSD , also about it in Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It and Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It .

I attended my second South Yorkshire Dementia Research Advisory Group meeting, was a judge for the dementia Friendly Awards and I was also back at Woodbrooke for the Young Dementia UK conference.

At the end of September I spoke at a Dementia Action Alliance meeting in Sheffield and attended my first Alzheimer’s Society, 3 Nations Work Group meeting as a Steering group Deputy in Manchester.


A busier time than previously and more evidence about how enabling post-diagnosis support could be.

You may say reader, how can you do all these things with a diagnosis of Dementia.

Others certainly do, they question our diagnosis, say things like “you don’t look like you have Dementia” or “that happens to me” but we do not choose to have a diagnosis of Dementia and have our rights abused.

At this time I am able to do these things but they come at a price afterwards. It is both tiring and the fog of Dementia has it’s revenge.



 

Rant Wednesday

Here we go again, it’s Invisible Disabilities Week in the US, however, in the UK “I” newspaper yesterday Julia Buckley writes about her invisible disability and being verbally abused by train staff because she doesn’t look ill.

How do you treat someone with an invisible disability ?

“One of the last times I got the train home to Cornwall, I was bullied by one of the platform staff at my destination, who then gleefully dared me to report her. I wouldn’t, she implied, because I was gaming the system. My crime? I’d booked assistance to help lift my small case and shopping bag – and I didn’t look ill.”


BYLG-Cover-Front-05-14-11-194x300

But You LOOK Good! is a book that gives those living with chronic illness and pain a voice. It expresses how they feel, what they need and how others can be an encouragement to them. Read an excerpt here


On Twitter the hashtag #InvisibleDisabilitiesWeek showcases people comments and experiences this week, there are also tweets from @InvDisabilities, and it’s also worth taking a look at the Invisible Disabilities Project

Even in the UK Parliament, this article from 2015 shows that MPs with invisible disabilities can be abused.

People of all ages face stigma and abuse because of their invisible disabilities even the young.


People with genuine invisible disabilities do not game the system, they will be abused by being unable to access things that should be available to them because they have an invisible disability.

When they do access things, they can be taken away because they begin to live with their invisible disability even though they are things that enable them.

Do we have to have a tattoo on our foreheads to stop the abuse?



 

10 Things You Should Know about LBD – Understanding Lewy Body Dementias

Lewy body dementia, also known as Dementia with Lewy Bodies, is one of the most common types of progressive Dementia.

Lewy Body Dementia causes a progressive decline in mental abilities.

People with Lewy Body Dementia may experience visual hallucinations,  cognitive problems, depression, apathy, and changes in alertness and attention.

Other effects include Parkinson’s disease-like symptoms such as rigid muscles, slow movement and tremors.

Another symptom may be REM Sleep Behaviour Disorder (RBD) where a person loses muscle paralysis and acts out their dreams during REM sleep.

Memory loss may not be prevalent in the early stages and there is no cure or medication that will modify the progression of the disease.

In Summary: People diagnosed with dementia with Lewy bodies have a build up of clumps and proteins in their nerve cells in their brain known as Lewy bodies. This damages the way the nerve cells work and communicate with each other.

10 Things You Should Know about LBD – Understanding Lewy Body Dementia’s

You can download a booklet from the Lewy Body dementia Association here



 

Dementia Diaries

Dementia Diaries is organised by Philly Hare and Rachel Niblock of Innovations in Dementia CIC.

It is a fantastic community of people living with Dementia who make audio diaries that are uploaded to the Dementia Diaries website: https://dementiadiaries.org/.

The diaries can be about anything in the life of a person with Dementia. They can be a good or bad experience, musings about the weather or an event in their lives, the only restriction is that they are under 2 minutes.

The diaries are now being used widely including Dementia Friends sessions and Dementia training.

The diaries have now expanded to include “Dementia Diaries Live” where 3 of the diarists spend about 20 minutes reading from a number of diary entries, which could be on stage, in a school or anywhere appropriate.

You will find contact details on the website if you are interested in “Dementia Diaries Live”.

Sunday Musings – 14 Oct 2018

Human Rights and their abuses are at the fore once again this week.

Disability News UK reported that the Government blocked user led groups being involved in the Global Mental Health Summit.

Having originally being told I would be attending I was told that the Summit was more about Mental Health and was unable to attend. Strange as the World Health Organisation still recognises that Dementia is a Mental Health condition, even though the UN recognises Dementia as a Cognitive Disability.

Disability News UK article here

Under the United Nations Convention on the Rights of Persons with Disabilities 2 examples are:

Article 21 – Freedom of expression and opinion, and access to information

Article 29 – Participation in political and public life

The CRPD is international Law, the UK is bound by International Law and the UK recognises the CRPD as International Law, yet it still will not fully incorporate the CRPD into UK Law.

When people speak out, they have their benefits stopped and the Government puts gagging clauses in it’s contracts with charities. So who really speaks for us!!

Charities gagged by Ministers over Universal Credit

Has society not learnt anything from the last 100 years .

This week

Monday saw me off to London for an event with Matt Hancock the Health secretary and others about the long term NHS plan. Also there were Chris and Jane Roberts, George Rook and Hannah Fitzgibbon from the Alzheimer’s Society, 3 Nations Dementia Working Group, Steering Group.

LongTermNHSPlan

Tuesday and Wednesday I was at local Memory Cafe’s.

Thursday, I tried to catch up with Social Media and emails.

Friday I did a Video for a Mental Health forum next month in London.

Yesterday was World Hospice and Palliative Care Day. Palliative Care is something that should be available to everyone, regardless of post code or disease, even people in the so called end stage of Dementia need Palliative care.

The Worldwide Hospice Palliative Care Alliance published 6 letters from women about the importance of Palliative Care.

I was also in London to meet Kate Swaffer at the Bloomsbury Hotel where we talked about life Dementia and Human Rights.

KatenMe

Ireland

Research Opportunity

Sheffield

Young Dementia UK have announced a new Care Coordinator and 3 volunteers in Sheffield

also Night care services reduced to one

I had stage 4 cancer, and chemo had taken my hair but I was deemed fit for work

Sheffield Mum left sobbing over disability benefit

Sheffield Young Carers are hosting an Interactive Showcase and AGM on Tuesday 30th October 2-4pm at Sheffield City College, Granville Road, Sheffield S2 2RL. Join them to see what they’ve been doing and how you could get involved.

Stop The Clock

Shropshire

Announcement – Exciting new part time vacancy from DEEP UK in Shropshire

Videos

Peter Berry’s 67th Weekly Video

Stephen Tamblin’s 23rd Weekly Video

This weeks blog

Is Rebecca Kellett’s article for Alzheimer’s Scotland Interaction, activity, distress and Dementia

Article 21 – Freedom of expression and opinion, and access to information

Article 21 – Freedom of expression and opinion, and access to information

  States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention, including by:

a) Providing information intended for the general public to persons with disabilities in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost;

b) Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means, modes and formats of communication of their choice by persons with disabilities in official interactions;

c) Urging private entities that provide services to the general public, including through the Internet, to provide information and services in accessible and usable formats for persons with disabilities;

d) Encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities;

e) Recognizing and promoting the use of sign languages.

Announcement – Exciting new part time vacancy from DEEP UK in Shropshire

As a member of my local DEEP group reader, I cannot emphasise how important these groups are to people with a diagnosis of Dementia and their families.

This vacancy provides an exciting opportunity to make a difference.


Development Facilitator for DEEP groups in Shropshire

• Twelve-month contract
• Self-employment status (you will need to pay your own tax and
national insurance)
• £400 per month (no overtime funding available)
• Reasonable expenses will be reimbursed and a contribution to
telephone costs
• Flexible working, approximately four days a month
• Working from home
• Will require countywide travel
• Taking part in relevant National DEEP Gatherings opportunities as
required (additional funding will be available for travel and
accommodation to attend these).

Purpose of the project

This project is funded by a DEEP Working Together Grant from Innovations in
Dementia CiC.
The main purpose of the grant, and your role, will be to:
• Establish ten new DEEP groups for people living with dementia across
Shropshire (in addition to the current groups) • To facilitate, provide support as required in consultation with the
project leader and group members • To establish a county-wide network • At least 150 people living with dementia to attend DEEP groups.

Background

The Dementia Engagement and Empowerment Project – ‘DEEP’ is hosted by
Innovations in Dementia, a small Community Interest Company. DEEP is
NOT an Organisation – it is a network of independent peer support and
influencing groups across the UK.
DEEP aims to give a voice to people living with dementia, to enable people
to remain socially engaged, to combat the fear and stigma associated with
dementia, and to provide peer support and influencing opportunities.
People living with dementia progress through stages from before diagnosis
through to end of life, and this journey may last (and often does) for many
years. At different stages people will want different types and levels of
support in order to live as they choose, and with independence.
DEEP groups provide social interaction, peer support and opportunities to
have a voice of influence for those in early to middle stages of living with
dementia. Age is irrelevant; what matters is that people can relax with people
they come to know and trust, where they have a voice that will be heard.
Many group members prefer not to have caregivers present, so that
members have time away from them, and to make sure they have their
independence for a while. This therefore also presents a respite opportunity
for caregivers and the people in the group.
DEEP groups meet regularly and informally. They are run by people with
dementia FOR people with dementia, although a group may choose to invite
family caregivers and others to attend as well. The way a group works and
attends should be decided by the group and may well be different for each
group.
There are usually no or limited cost involved as groups meet within their
usual communities, such as in cafes or pubs, other than for members’ own
refreshments. Sometimes groups choose to visit places together, either just
for fun and mutual support, or for a definite purpose, such as assessing how
dementia friendly a place is.
WE may be able to consider funding if transport is one of the factors for or
against people being able to attend.
Members may also become involved in influencing care and health provision
in their communities and speaking at conferences and training events where
expenses and or Thank-you payments may be available.

Shropshire

There are currently two main DEEP groups in Shropshire, in Shrewsbury and
Oswestry, with an embryo group in Whitchurch. These have been meeting for
over a year.
Finding people living with dementia to come to these groups has been slow.
This may be due to lack of understanding of the groups, reluctance to sit
down with others with dementia, lack of explanation and promotion by
health and care providers, or simply lack of public awareness and
knowledge.
However, members of both groups have begun to be engaged with
healthcare providers, and have spoken at events and meetings. And these
people want to do more and get change to happen.
Shropshire does not have good health and care services to support people
living with dementia to live well and as they choose. Dementia cafes tend to
attract people further on in their dementia journey, and often involve
organised activities which many earlier on do not enjoy.
There are pilot projects providing a Dementia Navigator (“companion”) in
Oswestry and Ludlow, and these are currently being evaluated. There is a
crisis service provided by the Mental Health Trust, as is the Memory Service,
which maintains periodic contact with people with a diagnosis.
DEEP groups provide an informal social opportunity to meet others of any
age or background, who are at roughly similar stages in their dementia
journey. They build confidence and allow members to say things they may
feel unable to say elsewhere, to share experiences and ideas, and to support
each other. Great friendships are made at a time when other friends may be
becoming more distant and harder to meet. This relationship that grows
becomes a fundamental confidence boost for people to stand up and talk
about their views and their rights.

Detail

This project will provide the opportunity to expand the DEEP network across
Shropshire. We believe that every market town should have a DEEP group.
Around 1.25% of the population live with dementia (including undiagnosed)
so most market towns have at least 100 people at some stage of dementia.
Across Shropshire, as a whole, it is estimated that there are 3,500 people
living with dementia, of whom probably 1,500 live in care homes.

We therefore want to establish DEEP groups in:
• Ludlow
• Craven Arms
• Bishops Castle • Church Stretton • Bridgnorth • Market Drayton • Whitchurch
• Cleobury Mortimer
• Wem
• Ellesmere • Much Wenlock.

You will:

• Initiate and facilitate at least ten new peer support and influencing
groups known as DEEP groups in market towns across Shropshire
• Establish relationships with health and care providers and
commissioners and inform them about what DEEP groups are and their
value and importance
• Be aware and potential current and future funding potential for DEEP
Shropshire
• Make local contacts in market towns and create local influence to
support development of DEEP groups
• Use all available social and other media, and more traditional methods,
to publicise DEEP groups
• Maintain a database of contacts and use email and other methods to
maintain contact with potential and actual DEEP members
• Call meetings and provide regular contact and reminders for people
living with dementia
• Attend DEEP group meetings at least initially and explain how they
work, and ensure that the members run their groups as they all choose
• Maintain records of contacts and attendance and write a report at the
end of the project about what has been achieved, and describe the
learning from the project

• Make phone calls and use email and other communication to keep
DEEP members in touch and aware of meeting dates and venues,
including reminders

Management and supervision

You will be managed and supervised by George Rook, the project lead. In
the unlikely event of difficulties support towards resolution will be sought
from The National DEEP Co-Ordinator Rachel Niblock at Innovations in
Dementia.
You will provide (at least) monthly updates to the project lead and will work
closely with him to plan and monitor progress.

Financial

The contract will be for twelve months for the sum of £4,800 paid monthly in
equal amounts.
Payments will be made at the end of the month.
The post holder will be responsible for their own tax, national insurance and
pension contribution arrangements.
Travel expenses will be paid at 45 pence per mile, and you will be expected
to minimise car journeys by planning visits and meetings carefully.

Safeguarding

You will be required to complete a satisfactory DBS check (or provide online
evidence thereof) before taking up the role, as they will be working with
vulnerable people.
Two references from current and previous employers or contracting
organisations will be required. In the event of this being impossible
alternatives will be discussed.

Notice

This contract will cease after twelve months, without further notice.
We would like to consider how the role may be funded after this twelve
month period.

Use of Equipment

You will be expected to provide your own telephone and IT equipment. Costs
directly related to this equipment will be reimbursed, for example paper and
ink.
If you cannot provide essential equipment the Project Lead will make
appropriate arrangements and provide what is necessary to carry out the
role.

Person Specification

Applicants should meet some or all of the following criteria, and should
demonstrate this in their application letter. Please use specific examples to
illustrate these criteria.
Essential (e)
Desirable (d)
Technical Requirements
Experience of working in or with the voluntary sector (d)
Understanding of dementia and its effects (d)
Skills for networking with professionals and non-professionals (e)
Able to use IT as needed for remote working, social media, word processing,
simple databases, email (e)

Personal Requirements

Good emotional intelligence and behavioural skills (e)

Able to work on their own initiative to meet objectives (e)
Determination to persevere and overcome disappointment (e)
Able to work flexibly as the job reasonably requires (e)
Able to travel independently around the county of Shropshire (e)
Listening and communication skills, tolerance and patience (e)
…………………………………………..

Applications

Please apply in writing, in no more than 1,000 words, along with the names
and addresses of two referees, explaining why you want to do this work, and
how your experience and skills fit the requirements.
Application letters should be sent to:
George Rook
Lyneal Mill Farm,
Lyneal
Ellesmere
Shropshire
SY12 0LE
It is hoped that the successful applicant will start work no later than January
1st 2019.
If you would like to discuss this contract please call George Rook on:
01948710456
07976189641
Or email georgerook51@gmail.com

Closing date for receipt of applications is Monday November 12th.



Applications Closed 16 October 2018 – Exciting new part time and voluntary vacancies from Young Dementia UK in Sheffield

I live in Sheffield reader and because I am under 65 there has been no post diagnosis support, services assessments or rehabilitation, even over 65 the support is limited.

It is so important to support to support people and their family from the point of diagnosis.

These vacancies provide an exciting opportunity to make a difference.


Exciting new vacancies – Group Coordinator & volunteers, Sheffield

In response to the inadequate support for people with young onset dementia in most areas of the UK, YoungDementia UK is developing a programme of national initiatives including piloting local service opportunities.  There are approximately 150 younger people living in Sheffield with dementia and 100s more family members providing support.

We are currently recruiting a part-time Group Coordinator to work for us 8 hours a month who will develop, market and coordinate a peer support group for people living with young onset dementia and their family members in Sheffield.  The group will offer opportunities for people to meet, share experiences and socialise.

Applicants should have prior experience in developing and facilitating groups as well as excellent organisational and communication skills.

Download Job Description  |  Application form  |  Diversity form

Deadline for applications is 16 October 2018.  Please note we do not accept CVs.
Completed applications should be sent to donnachadwick@youngdementiauk.org 

We are also looking for three volunteers to support the Group Coordinator.  

Download Volunteer Application form

If you would like further information about these vacancies please contact Donna Chadwick, National Development Manager – donnachadwick@youngdementiauk.org



 

Last Morning at Woodbrooke

After a challenging day at the Young Dementia UK conference in Birmingham yesterday, the night was calmer than the night before although the air again was crisp and there was a short shower before breakfast.

After Breakfast, there was still time to relax in the garden with a coffee, the sun was now out and out of the wind it was quite warm.

Time passed and it was soon time to say my goodbyes and head off in a taxi to the railway station.

The journey back to Sheffield wasn’t as bad and I arrived pretty much on time and took a taxi home.

Later on Friday night, I was online for the Dementia Alliance International Action Group meeting, a fantastic group of people worldwide, challenging the stigma and human rights abuses, who campaign for change not for themselves but everyone living with or supporting people with Dementia.

I have written this article after returning home and the detail of my time at Woodbrooke has already begun to fade.

I can remember the room but its detail is like a blueprint. I know what was in the room but trying to visualise each piece of furniture leaves me with an image of its outline.

Wardrobe

It seems as though the detail is just beyond my reach.

I look forward to being back at Woodbrooke in the near future and relaxing in the gardens, whatever the weather.

Also this week, Young Dementia UK announced new vacancies from Young Dementia UK in Sheffield