Category: Dementia

Sheffield UK – Striving to Make North Sheffield Dementia Friendly – 02 July 2019

Working in collaboration with Enrichment for the Elderly and the People Keeping Well partnerships, to make the four areas of Burngreave, Chapelgreen, Firth Park/Shiregreen and Southey/Owlerton dementia friendly.

Meet Rosie, one of SOAR’s Community Development Workers working on projects specific to dementia! Rosie has been in post almost 2 months and has been working hard behind the scenes to launch the Dementia Stakeholder meetings and ‘Dementia Friend Information Sessions’.

“I’m really excited.” The first Chapelgreen Dementia Friendly Stakeholder Meeting is on 2nd July 2019, at PACES Campus.

If you’re looking to get involved (or are just feeling curious) then come along, or get in touch for more info (please let Rosie know if you’re planning on attending).

Rosie is also delivering free interactive Information Sessions to inform attendees how Dementia affects a person and what you can do to make a difference.

By attending the session, you will be joining more than 2 million others taking action.

From being more patient in a shop queue to campaigning for change, every action count. Anyone of any age can become a Dementia Friend!

Find a session near you www.dementiafriends.org.uk,

or you can get in touch with me to book or find out about some sessions in north Sheffield. Rosie.Strathearn@SOARCOMMUNITY.ORG.UK

Join us for the Dementia Alliance International “A Meeting Of The Minds” Webinar: “Living with dementia in New Zealand”, 26/27 June 2019

Please note: this is one event, set in a number of different time zones.

About the Webinar: Alzheimers New Zealand asked Litmus to research what it is like to live with dementia. For the research, we talked to people with dementia, their care partners, and couples living with dementia. I want to share what I learned from listening to 49 New Zealanders living with dementia. These people generously shared the stories of their lives after receiving a dementia diagnosis, the support services they need, how they live meaningful lives, and the impact on their relationships.

In the webinar, Liz will share six findings from the research.She has chosen these findings as they made her reflect on my understanding of dementia and challenged my attitudes.

About our speaker: Liz is a co-founding partner of Litmus – a leading research, evaluation, and design agency in New Zealand. She says: I have a curious mind. I am a solution seeker. I never claim to know the ‘right’ answer, but I have the tools and expertise to find one. I am a champion for equitable health and disability services. I believe people’s stories matter. Understanding people’s lives are central to creating positive system and social change. I have led research into the lives of disabled people, people living with cancer, families with disabled children, people living remotely, and those living with addictions.

I am happiest when I step out of my comfort zone, and I am dealing with complex issues and working with multi-disciplinary teams. I have worked on some of the leading social issues facing New Zealand – bowel screening, cancer care, well child, and mental health and addictions.

Register here…


Times

Wednesday, June 26, 2019 (USA/CA/UK/EU)

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, June 27, 2019 (AU/NZ/JP/SGP/TWN/CHN)

  • 7:00 am Adelaide AU
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
  • 5:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Check your time if not listed above by using this link:

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…


PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER.

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE FREE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

THANK YOU

Sunday Musings – 23 June 2019

Since the last “Musings”, I have spent 4 lovely days in Edinburgh at a gathering of Scottish DEEP groups.

Yes reader, I know I am english, but according to my Grandmother, we are related to General Gordon, who led the ill-fated defence of Khartoum in 1885.

It was good to finally meet some of the DEEP members and their supporters from Scotland and Northern Ireland, often the only contact is through social media.

Chatting over my time there reinforced that they face many of the challenges we do in England.

People living with Dementia, may have universal rights, rights that still apply when we have lost mental capacity, but we also face many universal challenges, abuses of our rights, things that would not be tolerated with other chronic terminal conditions.

Seemingly, rights hard fought for in the 20th Century are still not universal, in fact the perceptions of many is that we are drifting back, unnoticed by society in general, to the time of the 1930’s, where things quietly changed and rights quietly restricted.

Where those in certain social, religious, racial and disability groups were abused, ghettoised and discriminated against.

On this day in 1966, In Canton, Mississippi,  civil rights marchers tried to erect tents on the grounds of McNeal Elementary School, they were pressed and tear-gassed by the Mississippi State Police, who were joined by other police agencies.

This contradicted the governor’s commitment to protect them. Leaders felt the violence took place because President Lyndon B. Johnson had not offered federal forces to protect them following the violence in Philadelphia.

Before that, while relations were often tense, the police had mostly respected the marchers.

Several marchers were wounded in the Canton attack, one severely. Human Rights Medical Committee members conducted a house-to-house search that night looking for wounded marchers.

The marchers sought refuge at Holy Child Jesus Catholic mission.

There the Franciscan sisters extended their help and hospitality to the marchers, especially to the wounded.

The following night the marchers returned to stay on the grounds of McNeal School without incident, as they did not attempt to erect tents.

After a short hospital treatment, Meredith was released

People living with Dementia are often seen as “Asocial”, meaning they are seen as avoiding social interaction; inconsiderate of, or hostile to others.

In fact they may have unmet needs, often confounded by the inability to communicate those unmet needs effectively.


Petitions

Petition – Don’t put our NHS up for negotiation

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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 – 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

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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


Survey

Needs of Young People with Dementia 2019

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub


 

Videos


Radio

Dimensions of Dementia – A Mother and Sons Journey Together


Newsletters

Alzheimer Europe

LEAD Coalition

Young Onset Dementia Alzheimer’s Group (YODA)


Blog

“Would I feel as safe somewhere else?….nope….would I feel as welcome and at home…..nope……so I’ll keep staying at Appletrees for as long as I’m able….after all….this view from my room has so many happy memories attached, so many happy ghosts smiling and keeping me company in Keswick …….

Wendy Mitchell’s article titled A couple of days in my paradise……..


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 – 22 June 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.

Dementia Diaries Website

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:

AGNES WONDERS ABOUT THE SUPPORT PEOPLE NEED TO GET INVOLVED.

WATCHING AN ANT HAS STEPHEN WONDERING.

JIM REFLECTS ON SUPPORTING OTHERS WITH DEMENTIA.

RAE REFLECTS ON THE LOVE SHE FEELS AROUND HER.

AGNES TALKS ABOUT THE SUPPORT FROM DEEP AND INNOVATIONS IN DEMENTIA.

PAUL IS OFF TO EDINBURGH TO JOIN HE DEEP GATHERING.

JOHN INTRODUCES HIMSELF.

TRACEY HAS BROKEN HER ANKLE.

AGNES IS STRUGGLING A BIT TO MAKE DIARIES AWAY FROM HOME.

CLIVE EXPRESSES FRUSTRATION AT THE ATTITUDE OF OTHERS.

JOY THREW HERSELF OFF A MOUNTAIN FOR YOUNG ONSET DEMENTIA.

JOHN SPEAKS ABOUT THE PROBLEMS HE CAN HAVE TRAVELLING.

JACQUI IS DELIGHTED WITH HER HOLIDAY SCOOTER RENTAL.

CHRIS ENCOURAGES OTHERS TO PRESS FOR THEIR RIGHTS AROUND BENEFITS.

STEPHEN HAS BEEN UNDER THE WEATHER BUT LOOKING FORWARD.


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.

Sheffield UK – South Yorkshire Dementia Creative Arts Exhibition 2019 at Meadowhall Interchange – 1 to 7 July 2019

South Yorkshire Dementia Creative Arts Exhibition 2019 at Meadowhall Interchange

SYDCAE1

I am very pleased to confirm that the 2019 11th annual South Yorkshire Dementia Creative Arts Exhibition will take place at Meadowhall Interchange between Monday 1st and Sunday 7th July 2019. Many thanks to South Yorkshire Passenger Transport Executive for their support. The exhibition follows on from our successful 2017 and 2018 Exhibitions at Sheffield Cathedral.


Persons with memory problems or dementia, their family members and care and support practitioners are now invited to take part in the 2019 event.

The theme for 2019 is ‘Dementia is…’. Anyone affected by memory loss or dementia is invited to contribute creative art to the exhibition. This could be painting, poetry, sculpture, mosaic, photographs, music, video-based work, life-stories – in fact anything connected (even loosely) with the theme.

I also appreciate fully that the exhibition’s continued success relies to a significant extent on arts coordinators and other supporters providing opportunities for persons with dementia or memory problems to get creative. If you are in a position to do so, please support others to take part and come and see their work on display.

The main objective of the exhibition is to offer members of South Yorkshire’s dementia community an annual opportunity to showcase their talents and share their experiences of life lived with dementia.

Everyone is welcome to visit the exhibition venue and see their work on display – and the exhibition is of course open to the public. As usual, trained, friendly, volunteers will be on hand to welcome people and, where the budget allows, refreshments will be available.

Information about parking is available on request but the easiest way to attend will be by train or tram.

If you register your interest a full Exhibition Programme for the week-long event will be sent out to you 4 weeks before the exhibition, and will include details of other activities associated with the exhibition which you might consider visiting.

I can confirm that the annual Dementia Futures conference is running on Friday 5th July at SITraN, University of Sheffield, at which postgraduate researchers from a range of disciplines explain their current PhD dementia research in plain English.

There will also be an ambitious National Dementia Spoken Word event ‘Mentioning Dementia’ held on Tuesday 2nd July in Sheffield at 38 Mappin Street, Sheffield, S1 4DT.

If you have poems or stories or other literary work connected with the theme ‘Dementia is…’ and want to share these with the world please get in touch with David Reid as soon as possible (d.reid@sheffield.ac.uk) to register your interest.

This is intended to be a celebration of the literary talents of persons with dementia and those affected by dementia.

Following a competition held among the tremendously talented students at University Centre Rotherham between September and December 2018, on the theme of ‘Dementia is…’, we have a beautiful poster available to advertise the exhibition. Congratulations and thanks to Humairaa Hussain for her wonderful design.


How to get involved

Please register your interest in taking part in the exhibition now by sending me an email d.reid@sheffield.ac.uk or leave me a message on 0114 222 2060. A poster for the exhibition will be sent to all those who register and would like one. If you have not already confirmed you intend to take part in the exhibition please contact me ASAP – this will help allay my anxiety about what will appear at the exhibition and assist greatly with planning. Those who register will be sent the stunning exhibition poster designed by Humairaa Hussain and further details about submission arrangements, including timings and labelling. I look forward to hearing from you soon. Please contact me if you have any queries.


David Reid

South Yorkshire Dementia Creative Arts Exhibition Coordinator

School of Nursing and Midwifery, University of Sheffield


Exhibition websitewww.sydcae.co.uk

Twitter: @SYDCAE

Facebook: SouthYorkshireDementiaCreativeArtsExhibition

Email: d.reid@sheffield.ac.uk

Third Day in Edinburgh

It was a dry, cool start for Tuesday.

The day started with a foggy head and my legs just weren’t having it but gradually after breakfast things improved somewhat.

I took a slow walk up to the Festival Theatre and once all had arrived, we got underway.

It was a shorter day than yesterday but pulsus nonetheless be productive.

Tommy and Paul performed their play “The Four Horsemen of Dementia”

and Ron read the beginning of a play he has written which will be performed later this year.

We then had a discussion about the different experiences of receiving a diagnosis.

After lunch we looked at some sensory crafts and Steve took us through the “Symbols” research, some of us have been involved in at various stages.

The research looks at changing some of the British Standard signs to make them work better for people living with Dementia as many of us have problems interpreting visual images.

After rounding off the two days, Paul led us in song to John Lennon’s “Imagine”

It was then time to say our goodbyes and I made my way back to the Hotel for a nap and then to start

Second Day in Edinburgh

It was a dry but cooler day in Edinburgh on Tuesday.

After breakfast I took a walk to the Quaker meeting House with the help of Google Maps Sat Nav and headphones but it wasn’t open to visitors until Wednesday but at least it was a bit if exercise.

Back at the hotel I attended the weekly Dementia Alliance International online support group and then it was time to set off for the DEEP gathering.

It was only about 5 minutes walk to the Festival Theatre again Google’s Maps with the Sat Nav turned on guided me.

The meeting wasn’t due to start until midday but I got there early to take part in some work around a new app for assisted travel on the railways.

There were 6 of us living with Dementia and if I remember correctly, there were representatives from Edinburgh station and LNER.

We heard about the app, we had a discussion and we made some suggestions and then it was time to put the app to the test.

We all set off for the railway to test out the app and to see if the sensors triggered a response from staff which it did.

We took a taxi back to the theatre to continue the days events.

It was a long day, many of us were tired by 5:30 but it is important to cover as much as possible in these gatherings as we do not have many opportunities to come together.

Quite often friendships are built over social media so it is great to meet face to face when possible.

Spending the day with your peers, not focusing on putting up a façade of normality and having a few hours of normality is priceless and a boost to our mental wellbeing.

After the meeting it was back to the hotel for something to eat and an early night.

Third Day in Edinburgh

First Day in Edinburgh

On Sunday I travelled up to Edinburgh for a DEEP gathering.

The train ran on time and the journey took about 5 hours but it left plenty of time to sleep on the way up and it wasn’t until past Newcastle that I was awake and able to catch a glimpse of the North Sea, followed by the Firth of Forth as we came into Edinburgh.

Once off the train, I turned to Google Maps to direct me to the hotel, pressing start a voice in my noise cancelling headphones guided me towards my hotel up some very long row of steep steps, which my COPD decided was a good wheeze literally and it took some effort to get to the top of the steps.

Once I had checked into the Hotel and unpacked it was time for about an hours nap, although I wouldn’t have had a nap in the past, since the arrival of Mr Dementia, I have gradually learnt the importance of self care.

After my nap, I took a walk along the Royal Mike and sat outside a Café for a while having a coffee, sat in the sunshine.

I walked further along and went round St Giles Cathedral, the main Church of Scotland Cathedral and it was also the Church of Scotland that baptised my father in London.

I had noticed that there was a concert on at 6pm so I returned to the Cathedral later on.

Being Fathers Day, it was an appropriate way to remember my Father, he would have enjoyed the music:

After the concert I took a slow walk back to the Hotel for something to eat and to meet up with Steve Milton from DEEP to talk about tomorrow’s gathering after which the day caught up with me and it was time to sleep.

Second Day in Edinburgh

DAI “A Meeting Of The Minds” Webinar: Living with dementia in New Zealand,26/27 June 2019

Please note: this is one event, set in a number of different time zones.

About the Webinar: Alzheimers New Zealand asked Litmus to research what it is like to live with dementia. For the research, we talked to people with dementia, their care partners, and couples living with dementia. I want to share what I learned from listening to 49 New Zealanders living with dementia. These people generously shared the stories of their lives after receiving a dementia diagnosis, the support services they need, how they live meaningful lives, and the impact on their relationships.

In the webinar, Liz will share six findings from the research.She has chosen these findings as they made her reflect on my understanding of dementia and challenged my attitudes.

About our speaker: Liz is a co-founding partner of Litmus – a leading research, evaluation, and design agency in New Zealand. She says: I have a curious mind. I am a solution seeker. I never claim to know the ‘right’ answer, but I have the tools and expertise to find one. I am a champion for equitable health and disability services. I believe people’s stories matter. Understanding people’s lives are central to creating positive system and social change. I have led research into the lives of disabled people, people living with cancer, families with disabled children, people living remotely, and those living with addictions.

I am happiest when I step out of my comfort zone, and I am dealing with complex issues and working with multi-disciplinary teams. I have worked on some of the leading social issues facing New Zealand – bowel screening, cancer care, well child, and mental health and addictions.

Register here…

Wednesday, June 26, 2019 (USA/CA/UK/EU)

  • 11:30 am Honolulu
  • 2:30 pm Pacific
  • 3:30 pm Mountain
  • 4:30 pm Central
  • 5:30 pm Eastern
  • 10:30 pm London/Glasgow/Dublin UK
  • 11:30 pm Paris, Munich, Amsterdam, EU

Thursday, June 27, 2019 (AU/NZ/JP/SGP/TWN/CHN)

  • 7:00 am Adelaide AU
  • 7:30 am Brisbane/Sydney/Melbourne/Canberra/Tasmania AU
  • 5:30 am Perth AU/Taipei//Beijing
  • 9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Check your time if not listed above by using this link:

COST TO ATTEND:

  • DAI Members/Care partners: FREE
  • Employed people: DONATIONS APPRECIATED
  • Full time Students: DONATIONS APPRECIATED

Register here…


PLEASE CONSIDER DONATING TO DAI OR BECOMING AN ASSOCIATE OR PARTNER.

WITHOUT YOUR DONATIONS, DAI COULD NOT PROVIDE THE FREE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 300.00 covers the current cost of 3 months of website management fees

THANK YOU.

Sunday Musings – 16 June 2019

I have spent 6 days in Birmingham at the Woodbrooke Quaker Study Centre.

It was a time for some self care and respite.

An opportunity to try a course, which didn’t go so well and a Dementia Enquirers meeting that went very well.

You can read about it here


Recently Dementia Alliance International (DAI) reached it’s fifth birthday.

DAI5Years

Started by 8 people, living with Dementia in 2014, it continues to be run by people living with Dementia for People, living with Dementia.

Thursday, this week,  was a significant milestone for DAI and Dementia, when DAI facilitated a side event at the United Nations, at the 12th Conference Of State Parties (CoSP) on the Convention On the Rights of Persons with Disabilities (CRPD).

The overall theme for the Conference was “Ensuring inclusion of persons with disabilities in a changing world through the implementation of the CRPD”

The side event was chaired by Kate Swaffer, Co-founder, Chair and CEO of DAI and taking part were:

Mrs. Catalina Devandas Aguilar, UN Special Rapporteur on the rights of persons with disabilities: opening the Side Event

Christine Thelker, DAI Board Member:“Dementia as a disability”

Bethany Brown, Researcher, Older People’s Rights, Disability Rights Division, Human Rights Watch: “Violations of the rights of older people with dementia”

Arlene Pietranton, American Speech-Language-Hearing Association: “Rehabilitation for dementia and aphasia”

Mr. Antony Duttine, Regional Advisor in disabilities and rehabilitation, Pan American Health Organization/World Health Organisation (PAHO/WHO): “Quality Rights”

Jan Monsbakken, Global Rehabilitation Alliance: “The Rights to Rehabilitation for All”

You can watch a recording of the event here


Peter Berry reached a milestone last week when he uploaded his 100th weekly  “living with Alzheimer’s” video and the video also features his wife Teresa.

I was away when Peter uploaded which is why it is in today’s article.

Congratulations Peter.


This week saw the release of Brian La Blanc’s powerful video “Into the Fog. 


Petitions

New Petition – Don’t put our NHS up for negotiation

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

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

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


Survey

New Needs of Young People with Dementia 2019

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


Radio

Dimensions of Dementia – A Mother and Sons Journey Together


Newsletters

Alzheimer Europe

LEAD Coalition

Young Onset Dementia Alzheimer’s Group (YODA)


Blog

It is quite clear that dementia is sent from Heaven to make our declining years happy, contented and full of fabulous dreams. Thank goodness the Spectator has seen this and told us.

Please, those who know us and count us as friends, don’t ever visit us, as we will not know you or value your visit. We’ll just ignore you and dream on in happy oblivion.

PS: What are your views on euthanasia?

George Rook’s response to a Spectator Magazine article titled Dementia…a blessing


New Resources

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia