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

 

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.

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”

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

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

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

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.

 

 

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

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

    

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

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 .

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.

It’s been a typical bank holiday weekend, the weather moving from Summer to Autumn, back to Summer and Autumn again this morning at the blink of an eye.

The news that a relative has Cancer and a friends husband has passed away suddenly brings home the fragility of our existence.

I watched a film called “The Notebook” based on a 1996 Nicholas Sparks novel with Gena Rowlands and James Garner, not quite as good as Sill Alice, but still worth a watch.

In my Sunday Musings yesterday, I  commented on Banning the Behavioural and Psychological Symptoms of Dementia (BPSD) an important topic and campaign.

Care group halves antipsychotic drug use within three months begins

“The new trial led by an Admiral Nurse working at Colten Care has put more emphasis on non-pharmaceutical interventions, which the care group believe could potentially “save thousands of lives” if applied nationally.”

A Comment on Linkedin from Leah Bisiani MHlthSc/DipBus/RN.1 Dementia Consultant- Uplifting Dementia.

After last weeks comments on my challenges with Dementia, this week has been a challenging one mainly for my COPD rather than my Dementia.

With temperatures swinging from 26C one day to 16C the next, then back to 26C it was inevitable that I would get a chest infection with the usual week of emergency Doxycyline.

For the most part Dementia remained on Pluto after last weekends attempts to keep me there, I cut back on my Dementia related activities for the week and focused on Family and me time.

Monday continued the journey back from the weekends visit to Pluto and the signs of a chest infection began.

Tuesday, dosed up on antibiotics and paracetamol, Sheila and I took our Grandson Lucas to Scarborough for the day which was not without it’s challenges.

Wednesday and Thursday were me time, plus catching up on emails and other peoples blogs.

Friday and Saturday saw my articles on Banning the Behavioural and Psychological Symptoms of Dementia (BPSD).

The campaign to ban BPSD is fundamental to changing Dementia care incorporating a rights based approach under the UN CRPD.

Currently, healthcare systems follow the medical model of BPSD which leads to the pathway of Chemical Restraint, Deprivation of Liberty and Involuntary Care.

The medical model treats the symptoms of BPSD usually by Chemical Restraint which leads to increase clusters of behaviours associated Dementia.

The social model  is concerned with treating the causes of behaviours, reducing the need for Chemical Restraint, Deprivation of Liberty and Involuntary Care. It enables  people to continue to live with their Dementia’s for longer, reducing the need for safeguarding, involuntary care, being moved to a Care Home and respects the persons rights to live their life without restraint.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is a set of universal rights which many countries have ratified but still do not enforce through legislation and putting into practice.

Dementia is now described in UN documents as a cognitive disability. It is not a mental health disorder, yes we may need the intervention of a mental health professional at the end stage of our Dementia as with other chronic terminal diseases. Imagine someone with cancer being chemically restrained because of behaviours caused by pain, imagine the outcry yet people with Dementia can be chemically restrained for something as simple as pain.

Sadly, Dementia is still seen as a silent disease and we are perceived generally as being hunched over, drooling, with wrinkly hands, yes we do suffer at times as if we had another chronic terminal disease but we would be perceived as fighters not sufferers.

We have the right to chose where we live, to family life, to make mistakes even if they have negative consequences, the right to express ourselves, to receive support and benefits.

We also have the right not to be abused verbally “you don’t look like you have Dementia” etc, not to be restrained verbally, physically, chemically or legally for the benefit of others except in extreme circumstances as with any other chronic terminal disease.

The Government, the media and consequently society blame people with Dementia and other disabilities for the ills of society, saying the young shouldn’t pay for the old, we are a drain on resources, that we should be stripped of our money and property to pay for our care.

Were these things said about AIDS/HIV in the 80’s, no, the world reacted positively, yet Dementia is talked about as the greatest healthcare challenge since then and yet it seems to be that where disabilities are concerned, we are returning to the 1930’s.

There is a lot of talk about change and many initiatives, basically a smokescreen for inaction, they do nothing to bring about a rights based system of care.

The Government can spend £100bn on a new version of Trident even tough the UK is signed up to nuclear reduction treaties but it cannot fund appropriate care for its citizens, including

In closing reader, the campaign to ban BPSD is the foundation to a move to inclusive, state funded, rights based, post-diagnosis support, services and rehabilitation for Dementia care, which reader, will be the subject of an article next week.

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Additional Sunday Reading relating to the Ban BPSD Campaign

The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It

 

This weekend has been a challenging one for me.

On Friday I put some eggs on to boil, yes reader, I know I’m not supposed to touch the cooker, but 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.

Saturday morning, I woke up just after 5am and the fog of Dementia was waiting for me with avengeance.

I liken these times using Greg O’Brien’s analogy “On Pluto”, for me my body is on earth but my head is far away through the fog on Pluto and it would be 4 hours before I could venture downstairs.

My daily trip to the shops cancelled as the challenges would be too great, later I turned off Social Media and the TV and waited in silence as my head made its slow journey back from Pluto.

This morning the fog of Dementia waited for me again but I was able to rouse myself after a couple of hours.

Over the weekend I have remembered how relaxed I had been last week in Birmingham at the Dementia Diaries Meet Up last week and I am now going to cancel all my Dementia based activities this week in favour of spending some family and me time.

My blog will continue, I already have some articles ready to publish as I cannot always find the words to write them daily.

Dementia will still be there in a weeks time and there will still be many battles and abuses to be fought but for now my own personal battle will come first.

If you are interested in Greg’s book it is called “On Pluto: Inside the Mind of Alzheimer’s”

To finish with, a couple of quotes from my favourite album:

“Every year is getting shorter.

Never seem to find the time,

Plans that either come to naught,

Or half a page of scribbled lines.

Hanging on in quiet desperation,

Is the English way.

The time is gone.

The song is over.

Thought I’d something more to say..”

“You lock the door and throw away the key

There’s someone in my head but it’s not me.

And if the cloud bursts thunder in your ear.

You shout and no one seems to hear.

And if the band you’re in starts playing different tunes.

I’ll see you on the Dark Side of the Moon..”

Posted by “Pink Floyd – Steve” on Twitter

 

Recently, Parliament passed the EU Withdrawal Bill, which was given Royal Assent on 26th June 2018.

Director of Liberty, Martha Spurrier said:

“Hundreds of MPs put protecting the Prime Minister ahead of protecting their constituents’ rights tonight. As a result, ordinary people will now have fewer legal tools to fight back when Parliament puts the interests of the powerful ahead of equality, fairness and human dignity.

“This marks a needless step backwards for the UK, weakening legal protections for LGBT equality, privacy, children’s rights, and the rights of people with disabilities. We need to consider what kind of country we want to be – whether we accept that a post-Brexit Britain is a country with fewer rights and a diminished position as a global leader on freedom and liberty. Rights lost aren’t easily won back, but we will keep fighting.”

It was an opportunity missed to strengthen rights and fully incorporate the UN Convention on the Rights of Persons with Disabilities into law.

Frankly reader, I do not care whether you are a leaver or remainer.

The facts about recent Referendum about Europe are:

January 1973 – After the European Communities Act was passed in October 1972, the UK became part of the European Economic Community (EEC), no Referendum

June 1975 – Referendum to confirm joining the European Economic Community (EEC).

November 1993 – As a result of the Maastricht Treaty the UK became part of the European Union, again no Referendum

June 2016 – Referendum to leave EU

March 2019 – UK Leaves EU no Referendum

*****

Currently, the debate is all about self interest and scoring points over each other rather than a reasoned discussion looking at the wider challenges facing our Nation come the end of March 2019.

Posts on social media remind me of being in the playground at Junior School, may be all those PPI claim adverts on TV will change to claims against peoples comments on social media after next August, after all, even in cyberspace we are governed by the laws of the land.

There is no informed debate about what will happen to ordinary people in the UK after Brexit.

A couple of examples of where there needs to be an informed debate are:

EU Judges Can “Interpret” Withdrawal Bill However They Like

Brexit: Losing care staff from EU could force disabled people from their homes, report warns

We are seeing a return to the divisive 1930’s, where minority groups such as immigration, religion and disability groups are blamed for the ills of society.

In relation to disabled people in Germany:

“The Nazis claimed that the social and economic problems that Germany experienced in the 1920s and early 1930s were due in part to

the weakening of the population created by an unfair burden.“

The Holocaust and disabled people: FAQ – frequently-asked questions

“Laws passed between 1933 and 1935 aimed to reduce the future number of genetic “inferiors” through involuntary sterilization programs: 320,000 to 350,000 individuals judged physically or mentally handicapped were subjected to surgical or radiation procedures so they could not have children. Supporters of sterilization also argued that

the handicapped burdened the community with the costs of their care.“

Nazi Germany 1933-1939: Early Stages of Persecution

As then the media has joined in with articles saying the young shouldn’t pay for the old, now wanting increased taxes on over 40’s and to take way the money and property of the old to pay for social care, that the disabled are a burden on society.

Hold on, aren’t we supposed to be an inclusive society.

Besides if you take the money and property from the old, what will the young inherit, who then will pay for their care.

Disability Rights UK has a page that links to articles about Brexit and Human Rights

Dementia is recognised as a disability by the UN.

The UK is signed up to the United Nations Conventions on Human Rights AND the Convention on the Rights of Persons with Disabilities but still we are not treated as equals with other disabilities, chronic terminal diseases.

Assessments for disabled benefits, council tax rebate, travel passes etc still do not recognise Dementia as a disability.

The weakening of those rights continues with the Mental Capacity Amendment Bill

*****

It is sad that the wartime ethos of make do and mend of our Grandparents has been replaced by greed fanned by the flames of media that in turn affects the opinions of so many.

Their support of inclusive community as opposed to divisive communities, where everyone was welcome and supported even if their views could be influenced by an elitist view of empire.

The alarmist headlines and the articles that influence opinions of readers one side of the debate or another. the latest being there will be riots after Brexit.

The almost daily articles about Dementia, how to not get it, how to reverse it or a new cure that do nothing for someone living with Dementia or their family but sells papers.

The media perceptions of some one with Dementia being 80-90 years old, with wrinkly hands, hunched over and drooling, leads to comments such as “You don’t look like you have Dementia” and persons with Dementia being challenged when using a Disabled Parking Space, Toilet, seat on the bus.

No one seems to look behind the headlines to disseminate the facts

Well that’s my musings over for today reader, you may agree or not that is your right, as it is my right to be heard even if I have Dementia.