Category: 2018

Sunday Musings

Things have improved for me Dementia wise as the week has gone on and I am slowly getting down to things that need to be done.

On Tuesday, I was at the Hospital for a hearing check. My hearing is fine, no significant hearing loss, it is just my Hyperacusis that is an issue.

I am going to have some hearing protectors that filter out lower sounds like these

music ear plugs

 

Wednesday, I was in Nottingham for a Trent Dementia event supported by DEEP UK

This week, Sir Philip Alston’s United Nations visit to investigate poverty and disability abuses in the UK has come to an end.

On Thursday, he spoke to  Disability News Service more details here

On Friday, Sir Philip gave a briefing Video – Sir Philip Alston Presents the Preliminary Findings of His Investigation Into the UK

We will not know the full extent of the report until June.

Sadly, seemingly there are still those that think things have changed, the government think they are doing a good job but would they walk in our shoes.

Also this week a  New Channel 4 Cafe in Bristol run by people living with Dementia started.

Videos

Peter Berry’s 72nd Weekly Video

Stephen Tamblin’s 28th Weekly Video

You can also catch Stephen on  YouTube

Blog

Sonya Barsness blog about Resilience

Sunday Musings

Things have improved for me Dementia wise as the week has gone on.

Wednesday, I was in Nottingham for a Trent Dementia event supported by DEEP UK

This week, Sir Philip Alston’s United Nations visit to investigate poverty and disability abuses in the UK has come to an end.

On Thursday, he spoke to  Disability News Service more details here

On Friday, Sir Philip gave a briefing Video – Sir Philip Alston Presents the Preliminary Findings of His Investigation Into the UK

Also this week a  New Channel 4 Cafe in Bristol run by people living with Dementia started.

Shropshire

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

Closing Date 12th November 2018

Videos

Peter Berry’s 71st Weekly Video

Stephen Tamblin’s 27th Weekly Video

You can also catch Stephen on  YouTube

Blog

Sonya Baraness’s blog about Resilience

Sunday Musings – 04 Nov 2018

This week

This week has been a quiet but challenging week.

The fog of Dementia ever present, thoughts come and go, lost in the fog.

It was the Alzheimer’s Europe conference in Barcelona this week.

Contrary to the perceptions of the media and society, many people living with Dementia and their caregivers, from around Europe, attended and made a valuable contribution to the three days.

United Nations Investigation into Poverty and Disability / Rights abuses in the UK.

The coming week sees the beginning of the UN’s investigation by Sir Philip Alston into Poverty and Disability abuses. Probably the first time a G8 country has been investigated for these issues.

UN human rights expert to visit UK to assess poverty

UN poverty expert warns against tsunami of unchecked privatisation

UN Expert on Extreme Poverty and Human Rights to Visit UK

Special Rapporteur on extreme poverty and human rights

As always the devil will be in the detail of the final report.

Shropshire

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

Closing Date 12th November 2018

Videos

Peter Berry’s 70th Weekly Video

Stephen Tamblin’s 26th Weekly Video (you will need to turn the sound up for this one)

Blog

George Rook’s blog about Dementia in the media…unsound and unbalanced

Sunday Musings – 21 Oct 2018

This week

It was a quieter start to the week by Wednesday, Hidden Disabilities had once again made the news

On Thursday I met with Donna Chadwick from Young Dementia UK to discuss the interviews next week for the Care Coordinator role for Sheffield and on Friday we went to Graves Park Health and Sports Centre to look at facilities for a young onset Dementia Support Group, things are beginning to happen in Sheffield.

Yesterday, I published an article about Urinary Tract Infections (UTI’s) and Dementia which looked at how something as simple as a UTI could lead someone down the pathway of BPSD to Chemical/Physical Restraint, Safeguarding/Sectioning and Involuntary care.

The Law and Dementia

74-year-old St Annes care home resident accused of pushing woman, 87, down flight of stairs

This weekend there is an article about legal capacity reform in Peru

Research

There is a research opportunity for people living alone with Dementia in the UK

Wales

First part of £100m transformation of health and social care announced

Shropshire

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

Closing Date 12th November 2018

Videos

Peter Berry’s 68th Weekly Video

Stephen Tamblin’s 24th Weekly Video

Welsh Transport Improvements

Poetry

A poem that speaks volumes about loved ones in care by David Hill

Blog of The Week

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.”

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

Sunday Musings – 07 Oct 2018

Poetry

Firstly a poem by Guy Cheales from 2014 called “Can Do”

People don’t want to know
what you are doing,
or how you do it,
or how you learned it,
or what you DID do.

People want to know,
HOW,
what you are doing now,
or what you can do,
AND what you WILL DO, for them,
and how what you do,
is going to
Empower
Capacitate
Motivate,
and thus,
enable THEM,
to do what THEY,
MOST want to accomplish.

This week

On Monday, I travelled down to London with Damian Murphy of Innovations in Dementia CIC for the 9th National Memory Services Forum at the Royal College of Psychiatrists the next day.

So to Tuesday and the Forum. It was an excellent event and the people that attended, understand the importance and empowerment of Post-Diagnosis Support, Services, Assessments and Rehabilitation and which reduces the reliance on chemical restraint.

Wednesday was a recovery day and on Thursday, my daughter Evelyn drove me down to Kent where we spent the day with another of my daughters, Katrina and her family.

It was also a sad day, as early evening we went to a Service of Celebration for my Auntie Pamela, who sadly lost her fight with Cancer recently.

As the song goes, “you don’t know what you’ve lost, till it’s gone”


The Negative Narrative of Dementia

On Wednesday I wrote an article about the negative perceptions of Dementia

and yesterday I wrote an article about the Use of the term Behaviour


 

On Video

Peter Berry’s 66th weekly video is now available on YouTube

Stephen Tamblin’s 22nd video on Facebook

Dementia Alliance International’s Webinar But you don’t look like you have Dementia

A Recent “Hello, My Name is” blog by Dementia Alliance International has a blog by a wonderful woman called Christine Thelker, who has rebuilt her life with Dementia and found happiness


In The News

On Wednesday, Karolina Kaminska published an article in the Express newspaper giving a Utopian view of post-diagnosis support in Dementia

Disability News Service Charities silence on Universal Credit deaths, hours after Minister announces 51m funding


In The Blogs

Karen Towes Thoughts about ageing: Rescripting life may include dementia

Raymond Duffy writes about the new BBC Music Memories site


In Closing

This week sees the World Dementia Council meeting in London which will hopefully encourage governments to fully integrate the The United Nations Convention on the Rights of Persons with Disabilities (CRPD) into National Law and healthcare systems.

The UK recognises the CRPD as International law but hasn’t fully integrated it into legislation or healthcare, I wonder why that is reader.

“Rant Wednesday” returns this week and another “Behaviour Change Ahead” on Saturday, where I will refer to behaviours as emotions and BPSD (The Behavioural and Psychological Symptoms of Dementia) as ERD (The Emotional Responses of Dementia) until someone comes up with a better term.

Have a good week


 

Sunday Musings – 30 Sept 2018

This Week

It was a busy start to the week.

On Monday was  the Dementia Alliance International online UK support group and then finishing off what I wanted to say on Tuesday.

Tuesday morning, I was supposed to meet with an organisation that were kindly going to support my local Memory Cafe but this was cancelled at the last minute. I was then off to The Crucible in the city centre and thanks to Kath Horner, I was there to talk about my experiences at the local Dementia Action Alliance meeting, which brought some new opportunities to engage locally.

In the afternoon I went by train to Manchester to meet up with members of the Alzheimer’s Society, 3 Nations Dementia Work Group, Steering Group for a meeting the next day.

I am proud to be a member of the steering group, I am a deputy not a full member meaning I am learning about the work of the group, preparing to become a full member when the opportunity arises, which is a great idea.

Even without a diagnosis of Dementia, you can have what is called “intruder syndrome” where it takes a while for you to be comfortable working with and learning the processes of a new group of people, a bit like starting a new job or the first day at a new school.

The next couple of days I was left to recover. We can speak and be involved in campaigning and improving the healthcare systems around Dementia but we have a price to pay after.

There are those reader, that question our diagnosis and whether we can or should be doing these things, but I will leave that to an article on Wednesday.


The Negative Narrative of Dementia

In her article today, Kate Swaffer talks about the negative narrative in her article Rethinking Dementia: Ban BPSD.

Maybe Matt Hancock MP and Jon Ashworth MP should have a read but I will be surprised if they do, even more if they invite me to have a conversation.


Politics

This week was the Labour Party Conference in Liverpool, a few days of speeches promising much but as always the devil is in the detail and whether they have the will or the resources to deliver.

The Tory Party conference begins today, already clouded in controversy after the behaviour of Julia Hartley-Brewer “caused considerable distress” to people at the Labour Party conference, including disabled party members with autism and anxiety conditions.


This weeks Blog

In his blog, George Rook talks satirically about the ridiculous notion of Munchausen by Dementia


On Video

On the subject of satire, here’s Claire Sweeney video of her 15 Minute Care Makeover

Alzheimer’s Speaks Radio, Talks to Peter Berry, Who is Living with Dementia

Peter Berry’s 65th weekly video is now available on YouTube

Stephen Tamblin’s 21st video on Facebook

Jeff Borghoff’s video AlzLife – Stigma


World Alzheimer’s Month

Today is the last day of World Alzheimer’s month, poorly covered by the media and their negative narrative of a life with Dementia.

I published a daily blog for World Alzheimer’s Month here and World Alzheimer’s Day here , also

WorldAlzMonth

Today’s final re-blog as part of World Alzheimer’s Month, focuses on an a article by Wendy Mitchell, aptly titled “Clearly we have much still to do…”

“That’s why I believe it must be so hard for those supporters to hear about us surviving each day as we do when their loved ones have declined quickly. It doesn’t make sense to them because their experience is very different.”

Clearly we still have much to do


In Closing

Well that’s the end of World Alzheimer’s Month, I’ll get back to the usual articles from tomorrow with the monthly articles “In The News” where I link media articles around Dementia and Disabilities, on Tuesday “In The Blog” a round up of relevant blogs.

On Wednesday a new series called “Rant Wednesday” where I will give my own opinion on what has annoyed me over the last week.



 

Sunday Musings – 23 Sept 2018

After a quiet start to the week Wednesday saw me off to Birmingham to stay at Woodbrooke for a few days me time.

Woodbrooke

 

While at Woodbrooke, for me, I felt and saw the arrival of Autumn, the crisp morning air and the green leaves on the trees turning brown and falling.

YoungDementiaUkConference

On Thursday I was at the Young Dementia UK conference at “The Studio” in the centre of a rainy Birmingham.

For me, it was an opportunity missed, too many graphs and figures.

It should have been an opportunity to showcase the work of people living with Dementia under the age of 65, to show what can be achieved with inclusive post-diagnosis support, services and rehabilitation.

To get out the message that the way Dementia is portrayed by society, Governments, Healthcare Systems, and the media is wrong, to turn the negative narrative into a positive one.

To get the message out that you can live your life within the reducing limits of your Dementia following a diagnosis of Dementia.

During the lunch break, I was able to meet Dr Richard Hawkins and Mark Ivory from the Journal of Dementia Care and Eloisa Stella, Vice-President and co-founder of Novilunio Onlus Association amongst others.

The highlight was a “Dementia Diaries Live”

DemDiariesLiveYDUKconference

performed by Diarists, Dory (Teresa Davies), Carol Fordyce and Peter Berry.

WAD

Friday was World Alzheimer s Day in support of which I had posted a number of articles and it was time to travel home. I enjoyed my time at Woodbrooke and the staff were fantastic and supportive as ever.

Also, Dementia Alliance International announced that CEO and co-founder Kate Swaffer was deservedly this years winner of the Richard Taylor Advocate Award .

Late on Friday night was 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.

The weekend has been one of recovery from my travels, catching up with emails and social media and some new opportunities.

Peter Berry’s 64th weekly video is now available on YouTube

WorldAlzMonth

Today’s re-blog as part of World Alzheimer’s Month focuses on an article by Philly Hare of Innovations in Dementia CIC, titled “Why dementia MUST be seen as a disability”

“So what do people need in order to live well with this particular disability, dementia? They need an approach based on recognition of their human rights, not one defined by funding constraints and/or an over-sensitivity to perceived risk. They need an approach based on the ‘social model’ not the ‘medical model’. They need to be listened to – to have their expertise recognised. They need to be enabled, supported to contribute. And they need to be included not excluded.”

Why Dementia Must Be seen as a Disability

SundayPapers

Finally, in the Sunday papers, a couple, married for 67 years being Torn Apart by the healthcare system in the UK.

Another example of why healthcare should not be decided on cost but should be inclusively state-funded via taxation for everyone, regardless of social standing or disease.

Politicians talk of a “Civil Society”, it’s time we had one.

 

 

Sunday Musings – 16 Sept 2018

It’s September, it’s Worlds Alzheimer’s Month but in the Hilton Hotel in Sheffield, Christmas has arrived this week

SheffieldHilton

Not only there but in a Tesco’s in London, they are selling Christmas chocolates and cards

Tesco1    Tesc02

It’s not even Halloween/Bonfire Night/Advent yet…

Back to more important matters, this week, World Alzheimer’s Month continues, which is a global campaign aimed at destigmatizing Dementia, raising awareness and combating misinformation about the disease.

Coordinated by Alzheimer’s Disease International, the Alzheimer’s Month campaign was launched in 2012 and includes Alzheimer’s day, which is held Sept. 21.

Sadly, people, society and the media  still sigmatize Dementia after years of campaigning and awareness raising. Six years ago Alzheimer’s Disease International released a report about  Overcoming Stigma.

The article Stigma of Alzheimer’s Disease Dementia By Shana D. Stites, PsyD, MS, MA and Jason Karlawish, MD, discusses how Clinicians can address the challenges of stigma in routine clinical practice.

This week, there is some coverage of new BMA guidance being circulated for consultation to a few of it’s members.

“So in summary, the guidance decrees that dementia, stroke and brain injured patients who lack mental capacity but are not imminently dying can be starved and dehydrated to death in their supposed ‘best interests’.”

From what I have read from various sources, there are no plans for public consultation and combined with the new Liberty Protection Safeguard, on the face of it, poses a huge threat to people living with Dementia.

Something I will be investigating further.

Dementia Alliance International continues it’s daily blog series “Hello, My Name is…” , with today’s article being about George Chong K.L., recognised as Singapore’s first Dementia Advocate, you can read the article here

Also, this week saw a video released by Kate Swaffer and Dementia Alliance International, which was recorded specifically as a video presentation for the 9th Biennial Lancaster Disability Studies Conference from 11-13 September, 2018.

“Dementia Activism: Human Rights and disAbility” by Kate Swaffer

WorldAlzMonth

Today’s re-blog as part of World Alzheimer’s Month focuses on an a blog by George Rook, Chair of the Alzheimer’s Society, 3 Nations Dementia Work Group, titled “Human rights do not depend on funding, they are fundamental”

“Lack of funds is not a defence. Human Rights do not depend upon funding. They are fundamental. In actual fact, evidence shows that the elements in this model would save the country more than they cost.”

Human rights do not depend on funding, they are fundamental.

Finally, Peter Berry’s 63rd weekly video is now available on YouTube .

Sunday Musings – 02 Sept 2018

It’s been another up and down week, some good days, some bad, the same has gone for the weather.

The fog of Dementia combined with the remains of a chest infection providing varied challenges, with Tuesday being particularly challenging.

Wednesday was my birthday bringing with it many birthday wishes and messages from friends around the world.

I am grateful for the Dementia community with it’s support and encouragement which has enabled me to re-engage with life, following my time in the metaphorical dark hole after my diagnosis.

Friday was a more relaxing day, my Daughter Evelyn took me to Holmfirth, home of “Last of the Summer Wine”, where I had a bacon butty in Sid’s Cafe and a photo on Nora Barry’s steps followed by a stop off at Cannon Hall Farm, Farm shop for some fresh produce and an Ice Cream.

Not a major achievement but a nice relaxing day, a bit of relaxation time, something I seem to need more of recently.

This week also brought invitations to join the International Fédération on Ageing and become a WEGO Health Patient Leader.

Yesterday saw the beginning of Worlds Alzheimer’s Month an annual event to raise awareness about Alzheimer’s worldwide, organised by Alzheimer’s Disease International and many other organisations worldwide, including Dementia Alliance International, with World Alzheimers Day on the 21st September.

It was disappointing yesterday to see only one newspaper article in a local paper in Ireland and no mention on the television news, their websites or national newspapers here in the UK about World Alzheimer’s Month.

Obviously, the lives of people living with Dementia, their carers/family and raising awareness are not newsworthy to the shame of the media. It will be interesting what coverage they bring or lack of it during the rest of September.

A daily series of blogs for World Alzheimer’s Month are being published about members of Dementia Alliance International.

Sadly there is still a lack of coverage in the media for World Alzheimer’s Month.

That is all for today’s musings, I hope you have a good week reader.