Category: Organisations

This Week on Dementia Diaries – 23 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:

 WE ALL EXPERIENCE DEMENTIA IN OUR OWN UNIQUE WAY

JACQUI TALKS ABOUT THE YEAR SINCE HER FIRST DEMENTIA DIARY

STEPHEN REFLECTS ON THE BBC COUNTRYFILE PROGRAMME

PAUL TALKS ABOUT THE DEEP MEETING IN MANCHESTER

AGNES TALKS ABOUT HER PROBLEMS WITH SELF-DIRECTED SUPPORT.

JACQUI IS PLEASED ABOUT SEEING HER CONSULTANT.

STEPHEN LOOKING FORWARD TO THE CHANGES SPRING WILL BRING.

A GROUP DIARY HERE – THE GREAT CAMDEN MINDS TALKING ABOUT TECHNOLOGY AND EATING CAKE.

AGNES HAD A GREAT MEETING WITH DEMENTIA ENQUIRERS.

THE HAPPY TANDEMER (MHARI) TALKS ABOUT THE ZOOM MEETING SHE TOOK PART IN – FEELING BRAVE!

RAE READS A TOUCHING POEM.

CAROL REFLECTS ON THE ROLE OF FACILITATORS IN DEEP GROUPS.

AGNES REFLECTS ON WHAT MAKES DEMENTIA ENQUIRERS MEETINGS WORK SO WELL.

RAE IS BOUNCING ROUND THE HOUSE…….

THE HAPPY TANDEMER (MHARI) TALKS ABOUT THE ZOOM MEETING SHE TOOK PART IN – FEELING BRAVE!

MELVYN IS CONFIDENT THE ARRIVAL OF SPRING WILL LIFT HIS SPIRITS.

AGNES REFLECTS ON THE HISTORY OF ACTIVISM IN SCOTLAND, AND ENCOURAGES OTHERS TO SEEK OUT PEER SUPPORT.

MELVYN ‘S MESSAGE ABOUT KNIFE CRIME AND THE NZ MASSACRE

CAROL TALKS ABOUT MAKING DECISIONS FOR THE END OF LIFE.

RAE MISSES HER MUM, WHO PASSED AWAY A YEAR AGO.

AGNES TALKS ABOUT THE IMPORTANCE OF ADVENTURE WITH DEMENTIA. FEELING BLESSED.


 

 

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.



 

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 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



 

This Week on Dementia Diaries – 09 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:

AGNES LOOKS FORWARD TO BEING INTERVIEWED ABOUT THE HISTORY OF DEMENTIA ADVOCACY IN SCOTLAND

TOMMY REFLECTS ON WHAT IS NEEDED TO IMPROVE WORK TOWARDS BETTER TRANSPORT

PAUL SETS OUT HIS DREAMS OF LIVERPOOL WINNING THE PREMIERSHIP

STEPHEN REFLECTS ON HIS WEEK, INCLUDING A VISIT TO THE FIRE SERVICE

PAUL REFLECTS ON A GOOD DAY’S WORK ON TRANSPORT AND A GOOD SOCIAL TOO!

….AT THE OTHER END OF THE DAY PAUL IS TIRED BUT HAPPY WITH THE HARD WORK DONE IN MANCHESTER

AGNES IS OFF TO MEET PHILLY AND KUMIKO, WHO HAS COME FROM JAPAN TO LISTEN AND SHARE

AGNES IS TYING A BIG RIBBON BOW AROUND HER MEMORIES OF 13 YEARS OF ACTIVISM

JULES IS SADDENED AT THE LOSS OF HER DRIVING LICENCE.

JULES IS FEELING CROSS THAT THE DECISION TO STOP DRIVING WAS TAKEN WITHOUT HER

RAE EMERGES FROM BENEATH THE DUVET WITH A JOKE.

AGNES REFLECTS ON THE IMPORTANCE LETTING PEOPLE KNOW THE SUPPORT SHE NEEDS

WENDY PONDERS AN INTERESTING ANALOGY FOR BREXIT

WE NEED TO TALK ABOUT DEMENTIA, BUT NOT AT THE EXPENSE OF THE GOOD MOMENTS

WENDY SAYS ‘NEVER GIVE UP ON YOURSELVES’


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.



 

This Week on Dementia Diaries – 02 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:

MELVYN FEELS SUCCESSIVE GOVERNMENTS HAVE NEGLECTED THE NHS

JACQUI WONDERS IF THE NHS DIABETES PREVENTION PROGRAMME COULD BE A BIT MORE ACCESSIBLE

MELVYN HAS SOME THOUGHTS ABOUT THE MPS WHO RECENTLY LEFT THE LABOUR PARTY.

NIGEL PAYS TRIBUTE TO THE WOMEN HE HAS WORKED BESIDE SINCE HIS DIAGNOSIS

STEPHEN HAS A GREAT DAY WORKING WITH THE BBC ON COUNTRYFILE

AGNES WONDERS OF ANYONE HAS ANY GOOD TIPS FOR EFFECTIVE REMINDERS

JACKIE HAS A GREAT DAY WITH HER NEW PA AT THE HAT MUSEUM, DESPITE FORGETTING HER COAT AND WALKER.

MELVYN ARGUES FOR MORE CONSISTENCY OF CARE

JACKIE WONDERS IF THE NHS DIABETES PREVENTION PROGRAMME COULD BE A BIT MORE ACCESSIBLE

MELVYN TALKS ABOUT THE NEED FOR MORE TRAINING AND SUPPORT FOR CARE HOME STAFF

AGNES BAKES SCONES WITH THE HELP OF TALKING SCALES AND SCOTTISH WAR BLIND

AGNES NEEDS HELP TO FIND A CARE PROVIDER THAT UNDERSTANDS TECHNOLOGY

TRACEY DESCRIBES A GREAT COUPLE OF DAYS WORKING IN LONDON

PAUL TALKS ABOUT TESTING A NEW APP AT A DEEP MEETING

LISTEN TO RAE’S TRULY BEAUTIFUL POEM FOR HER AUNTY SUE

JULES REPORTS ON A GREAT DEEP MEETING IN LONDON – SHE’S NOT SO KEEN ON THAT LONDON THOUGH…

TRACEY WAS AT THE SAME MEETING WITH JULES, AND TALKS ABOUT HOW APHASIA

STEPHEN ANNOUNCES THE BROADCAST DATE OF THE EDITION OF COUNTRYFILE HE WORKED ON.

JACQUI HAS A GREAT DAY WITH HER NEW PA AT THE HAT MUSEUM, DESPITE FORGETTING HER COAT AND WALKER.

STEPHEN ANNOUNCES THE BROADCAST DATE OF THE EDITION OF COUNTRYFILE HE WORKED ON.

DORY’S CABIN FEVER IS OUTWEIGHED BY NEWS HER ARTICLE IS ABOUT TO BE PUBLISHED!


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.



 

This Week on Dementia Diaries – 23 February 2019

A selection of this weeks Diaries

THE DIFFERENCE GOOD SUPPORT MAKES

‘IT WAS WONDERFUL JUST TO FEEL NORMAL FOR AN HOUR TO DO MY SHOPPING’

AGNES HAS BEEN INTRODUCED TO ALEXA – WHAT A SUCCESS!

RAY REPORTING FROM SPRINGBOARD, ‘LET’S BE HEARD’ AND THEY’VE HAD A TEA DANCE TODAY!

WHAT DO YOU DO WITH SECRETS WHEN YOU ARE LIVING WITH DEMENTIA??

A TRIBUTE TO SOMEBODY WHO SEEMS TO COME ALONG AT JUST THE RIGHT TIME

THE HAPPY TANDEMER IS WALKING A BIT LIKE JOHN WAYNE AFTER A FANTASTIC LONG TANDEM RIDE WITH FRIENDS

MELVYN NEEDS YOUR THOUGHTS ABOUT WHAT WE CAN ACTUALLY DO ABOUT THE NHS WHO CALLOUSLY WIPE PEOPLE OFF THIS EARTH THROUGH LACK OF CARE

CAROL SHARES HER EXPERIENCE OF AN AUDIOLOGY APPOINTMENT

‘THEY SHOULD GIVE YOU THIS WEATHER ON THE NHS IF YOU HAVE DEMENTIA’ SAYS JIM FROM TENERIFE!

THE HAPPY WANDERERS ARE DUE TO BE FILMED BY COMIC RELIEF BUT STEPHEN HAS A CHEST INFECTION, WHICH IS NOT GOOD WHEN YOU HAVE COPD.

‘YOU DON’T MEET OUR ELIGIBILITY CRITEREA. LET ME REFER YOU TO ANOTHER SERVICE WHO WILL TELL YOU THE SAME’

WHAT LIFE’S REALLY LIKE, LIVING IN DEMENTIALAND


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.



 

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”.



 

Scottish Dementia Awareness Week 2018

Starting tomorrow, 4th June 2018, it is Scottish Dementia Awareness Week 2018.

Alzheimer Scotland has online information about Dementia Awareness Week 2018.

In their blog Let’s Talk About Dementia  you will find out about what the Society is doing online during this week.

The Alzheimer Scotland Centre for Policy and Practice (ASCPP), which is based at University of the West of Scotland (UWS), is running a social media campaign in support of Scotland’s Dementia Awareness Week, which runs from Monday 4th to Sunday 10th June 2018 with the Twitter hashtag #oneweething.

There will be a stand at the atrium at Dumfries and Galloway Hospital along with other events in the area.

Danestone Community centre in Bridge of Don will be holding events all week.

intu Braehead are having ‘Beer with Buddies’

Trellis Scotland want you to pot up a plant or sow a seed for Dementia Awareness Week.

There will be events in the villages of Juniper Green and Baberton, Currie and Balerno all week.

On Monday, there will be Dementia friends sessions at Paisley and St Johnstone also

 

DAWSCarnoustie

 

Alzheimer Scotland is calling on the people of Oban and Lorn to help make sure nobody faces dementia alone with various events.

On Tuesday, a pop up cafe will be held at Alzheimer Scotland’s Dementia Resource Centre on King Street, Aberdeen between 10.30am and noon.

On Thursday the Scottish Fisheries Museum is having a Dementia Action Day and in St Andres the Byre Theatre is holding an event.

On Friday, Ballachulish, Kinlocheven, Gelncoe Obich and Duror will be having a Cuppa and Cake fundraiser at Ballachulish Hall from 12-4:30pm and Ayrshire College Kilwinning will be holding an awareness event.

 

The Alzheimer Scotland Annual Conference is on Friday at the EICC, The Exchange, Edinburgh, which is where they’ll “investigate how to close the gap between policy and practice, design a digital strategy that is inclusive of people with dementia, delve into the future of dementia research and much more.”

Friday is also the closing date for Scotland’s Dementia Awards 2018 please nominate.

Some buildings have gone purple in Glasgow

PurpleGlasgow

Police Scotland will be reminding people living in the Highlands and Islands , worried about people with Dementia losing their way,  to download the Purple Alert App

There will be many more events during the week, engaging locally & nationally and you will find a further list of some of the local events here.

 

 

Rural Dementia Conference 2018, 28th May in Ireland

On Monday, The Rural Dementia Conference 2018 was held at Glenlo Abbey Hotel near Galway, Ireland.

The event was hosted by Dementia Ireland and FORUM Connemara and included people living with Dementia, family members and carers as well as medical professionals, policy makers, PhD students , local businesses and broadcast on You Tube.

Agnes Houston, from Scotland, was the first to speak, and some of the interesting comments I noted during the day, include:

Some services are: “Square pegs in round holes”

Scottish Dementia Champions: “Dementia Champions challenged by time and distance getting between visits”

Anti-Psychotic use: “27% of people living with Dementia in 12 Western countries,  were prescribed Anti-Psychotics on average”

Being a carer: “You are not being selfish in taking care of yourself”

Stigma: “Stigma, a huge problem for many”

Respite at home: “The most beneficial for the person with Dementia, their carer and family”

Human Rights: “We’re not talking about putting sticking plasters on”

Whilst I wasn’t there and only got to see some of the sessions on You Tube, it was clear that things are moving on from awareness to engagement and action in Ireland.

Empowerment from the point of diagnosis, including support, rehabilitation and counselling for the person receiving the diagnosis and their family along with involving them in developing new pathways, services and respecting Human Rights.

Moving away from the one size fits all model to inclusion and choice, enabling not disabling.

“Remember to enable, not do for”

Towards the end of the day, Chris Roberts and his wife Jayne, from Wales, talked about their life with Dementia.

Sadly for Chris and his wife Jayne, their time in Ireland was spoilt by the proprietor of Flaherty’s Pharmacy, Main Street Oughterard, Co. Galway:

ChrisJayneIrelandDiscrimination

as Jayne Goodrick said previously at the Alzheimer’s Society Conference in London

“Everything has changed, and nothing has changed”

Dementia Action Week 2018 – The Alzheimer’s Society Conference and more

This week, 21st to 27th May is Dementia Action Week which included the main event, the Alzheimer’s Society conference in London, at the Oval Cricket Ground.

Opened on Tuesday by Fiona Phillips followed by Kathryn Smith, Chief Operating Officer of the Alzheimer’s Society, before getting on to the main part of the conference.

I too, in my small way tried to do my bit through my blog.

On Monday, I wrote about rights.

On Tuesday,  I issued a challenge to those with the power to make a difference to the lives of people with Dementia and their carers.

On Wednesday, I wrote about Kate Swaffer of Dementia Alliance International and her   announcement about the new global Rehabilitation Alliance and Alzheimer’s Deisease International marked the 1st anniversary of the adoption of the Global plan on Dementia.

On Thursday, I wrote about DEEP UK’s  York Minds and Voices at York station unveiling their new banner.

On Friday I wrote about The Rights of our Dementia Family

On Saturday I wrote Its Time for Action, Not Just Awareness.

Katy Styles is running a petition for a UK wide carer’s strategy, don’t forget reader, our carers/family play an important role, enabling us to live as well as we can with our diagnosis.

The need for properly funded post-diagnosis support has been further supported today

In the 21st Century, we shouldn’t need a Dementia Action Week, but we do:

Rail staff told not to help disabled passengers board if it makes train late

which Disabilty Rights UK comment on and there is a petition to stop this

as Jayne Goodrick said at the Alzheimer’s Society Conference this week

“Everything has changed, and nothing has changed”