Rant Wednesday

Recently, it was the centenary of women getting the vote in the UK, Emmeline Pankhurst was a British political activist and leader of the British suffragette movement who helped women win the right to vote, who with others in the movement were abused and vilified.

The 1930’s, where society and the media, turned on the disabled, Gypsies and the Jewish Community, blaming them for the ills of society, which lead to the Holocaust.

It is also easy to forget that through Hungerhauser and T4, the disabled were the first victims of the Holocaust.

In the 1950’s and 60’s, Martin Luther King Jr. who was an American Baptist minister and activist, who became the most visible spokesperson and leader in the civil rights movement from 1954 until his death in 1968, challenged segregation, inequality and human rights abuses, although they are still prevalent in the US today.

Nelson Mandela, who was imprisoned for 27 years but who campaigned against Apartheid and following his release in 1990, became President of South Africa in 1994, marking the end of “White Rule” and the end of the rights abuses of that regime, again there has been little real change.

Looking back over the last 100 years, as Jayne Goodrick has said previously “Everything has changed, but nothing has changed”.

We have gone full circle, women are still fighting for equality, society and the media continues to blame the disabled for the ills of today’s world.

The proposed Liberty Protection Safeguard and the new BMA guidance, which may or may not come into force, could be compared to a modern day Hungerhauser or Aktion T4 Programme.


In Death by deliberate dehydration and starvation: Silent echoes of the Hungerhauser, John M Dolan writes:

“During the final days of his life, Oscar Wilde, aware that death was imminent, lost interest in food but drank whenever one of his visitors brought him a bottle. In reply to a friend’s warning that his drinking was self-destructive, Wilde said: “You are qualifying for a doctor. When you can refuse bread to the hungry, and drink to the thirsty, you may apply for your Diploma.” 

Wilde was a master of hyperbole. He was, after all, the playwright who assured us that “nothing succeeds like excess”  and who is reported to have declared, while sipping champagne on his deathbed: “I am dying as I have lived: beyond my means.”  His deathbed quip about the ability to refuse bread to the hungry was a preposterous characterization of the qualifications of a nineteenth-century physician; but, incredibly enough, as our own century draws to a close, we have among us individuals prepared to take seriously Oscar Wilde’s specifications of the requirements for a physician’s diploma.

It is a remarkable circumstance that, in a nation whose wealth and resources are so vast as nearly to defeat the imagination, scholarly conferences, articles in learned journals, and courts ponder the question whether we can be justified in deliberately causing death by withholding food and water.

Dostoevsky remarks that one may judge the degree of civilisation in a society by entering its prisons. He measures a society’s civilisation by gauging the fate it accords some of its most wretched members. In the same spirit, others argue that the correct measure of the degree of justice in a society is the lot it accords its least fortunate citizens. Rawls’s theory of justice holds that a just society is one which, in addition to according each of its citizens the largest amount of political liberty compatible with each enjoying the same liberty, also allocates all other goods that arise from social cooperation (wealth, income, privileges, and so on) in accordance with a scheme designed to maximise the welfare of the least advantaged representative persons. And Christ’s teaching was: “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (6)

The present task is one of casuistry. In the case proposed for analysis, certain family members are asking the officers of a nursing home to stop supplying nourishment and fluids to a relative who resides in the home administered by those officers. The relative in question is an unconscious man who has been diagnosed as being in a “persistent vegetative state.” Thus, we have before us someone wholly defenceless and vulnerable. If any one fits the biblical description, surely Mr. Stevens, the defenceless disabled man whose nutrition may be cut off, counts as “one of the least of [our] brethren.” Our assignment is to state principles that should be applied in the case at hand and to recommend a course of action. The next section of this article articulates three principles that bear on the case and draws the conclusions they dictate. The sections that follow examine some of the details involved in the case and express some reflections on the moral climate of a society in which cases such as the present one are viewed as presenting a serious challenge to moral intelligence.

The thesis defended here is that the central question raised by the case under discussion is whether it is every permissible to arrange deliberately for a disabled person who is not terminally ill to die of thirst and starvation. It is worth recalling that the Phoenicians, who devised the method of execution known as crucifixion, originally employed the technique as a method of killing by deliberate dehydration and starvation.

The earliest ‘cross’ was actually just a vertical stake to which the condemned was tied and left to expire from thirst and starvation.

It is remarkable that physicians and laymen are now seriously contemplating adoption of a method of killing that was regarded as particularly cruel and degrading in the ancient world and was, among the Romans, who inherited the technique from the Phoenicians, “reserved for slaves and the worst of criminals. …”


Antisemitism is still prevalent and the LBGTI and BAME communities are still fighting for equality.

They say history repeats itself, surely a civilised society should learn from history and the mistakes of our forefathers.

My references to the 20th century aren’t meant to offend, rather to illustrate that nothing has changed and the lessons of those times have yet to been learnt.

We get told “you don’t look like you have Dementia” or “that happens to me” etc by the naysayers.

No one chooses to be abused by a system that on diagnosis, sends you home to die, a diagnosis which means that you have to fight and pay for your support (when you can find it) and a system that leaves you depressed and abandoned and subjected to the medical model of healthcare.

A system that stigmatises you following that diagnosis, that leads you to be abused by the medical model of BPSD (Behavioural and Psychological Symptoms of Dementia) and dehumanised with the lack of a rights based approach to you care, which discriminates against a person because of lack of capacity or advancing age.

In “Behaviour Change Ahead” on Saturday, 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.

These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.


Resources

Why Dementia Must Be seen as a Disability

The Suffragette Movement

Lessons from History

Aktion T4 programme

T4 Programme

Martin Luther King Jr

Nelson Mandela

LGBTI rights, where do we stand



 

Young Dementia UK Conference

After a relaxing day Back at Woodbrooke, all night the wind and rain lashed about outside with the odd branch falling to the floor.

There was a crisp Autumn feeling and the leaves had begun to fall across the gardens.

We all gathered for breakfast and then took taxi’s into the city centre to “The Studio” where the Young Dementia UK Conference, organised by Hawking publications, was being held.

The Studio

After a coffee, the conference began with the opening addresses and the obligatory housekeeping.

There were then a series of presentations, which contained too many facts and figures, too many numbers and graphs and by the break it was beginning to be a challenge to stay focused.

After the break and more presentations came the “Dementia Diaries Live” performance

some relief and humour from the mornings challenges, followed by a humourous talk by Peter Lyttle from Freshers Cafe

YDUK2

Over lunch it was time to meet and talk to delegates, to challenge perceptions and talk about how people with Dementia can be involved in the evolution of Dementia services, challenging the negative narratives and the human rights abuses.

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.

Peter Berry had presented his cheque for the money he raised from his cycle ride in June from the Welsh coast to the Suffolk Coast

PeterBerryCheque

It was just a shame that this was done by the stairs not on stage at the conference.

After the lunch, the conference continued but the continued wave of information became overwhelming for our group, I looked around and they had all gone, to be found behind the Innovations in Dementia/DEEP UK/Dementia Diaries stand on bean bags

Frazled

I think we were generally disappointed with the conference, my understanding that last year was about professionals and this year about people living with Dementia.

Having written this article retrospectively, the detail of the presentations have long been lost in the fog of Dementia but this is a copy of the programme.

YDUKprogramme

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.

The Global Disability Summit mantra of “Nothing About US, Without Us” could have been more prominent in the planning.

Eventually we retired to the local Pub and then made our way by taxi to Woodbrooke.

After supper we relaxed before retiring to bed one by one, Wendy Mitchell having left us at the conference to continue her busy schedule in the west country.

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

Tomorrow would be my Last Morning at Woodbrooke for a while.

Back to Woodbrooke

Recently, I had the pleasure of returning to Woodbrooke, formerly the home of George Cadbury and now a Quaker conference centre in Birmingham.

A taxi took me to the railway station and with my noise cancelling headphones removing the cacophony of noise surrounding me I made it onto the train.

Naturally we were delayed getting to Birmingham, engineering works at Derby causing a stop start progress.

Arriving in Birmingham, later than planned, I took a taxi to Woodbrooke, where the receptionist greeted me with a smile and her broad Brummie accent, seemingly recognising me from my previous visits.

I left my coat and bag in the luggage store as it wasn’t yet time to check in and I got a coffee and went and sat in the garden.

As I sat in the garden with my coffee, it was windy and spitting with rain but I didn’t care, it was time to relax and enjoy the wonderful garden.

I had left Dementia at the door with the judgements and negative perceptions, it would sneak in over my time there but would be sent away like a naughty child.

I bumped in to Philly Hare and Rachel Litherland from Innovations in Dementia CIC who were having a meeting there, Philly would be staying on but Rachel would be off to London later that day.

After lunch, coffee in hand it was back to the garden, the sun had come out and it was quite warm out of the wind.

I sat and relaxed waiting for the arrival of more of my wonderful friends who I would probably have never met if it wasn’t for my Dementia.

From 5pm they began to arrive and by supper time we all gathered in the dining room to catch up.

After supper came the rehearsal for the “Dementia Diaries Live” performance at the Young dementia UK conference the next day.

It began calmly and seriously…

Calm

Then the humour began

DDLIVE3

…until it ended in a fit of giggles.

Sadly, no one was up to taking photos of our “Director of Laughter” Wendy Mitchell leading the rehearsal into chaos and gradually one by one we retired for the night.

It was a wonderful end to the day reader, people with Dementia can enjoy themselves.

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

Tomorrow would see us at the Young dementia UK conference.

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


 

Behaviour Change Ahead? – Use of the term Behaviour

Wherever you go, whatever you read, see or hear you may find the term behaviour in relation to Dementia.

Behaviour is a negative term, part of the medical model of healthcare, that makes people living with Dementia sound like naughty children and may lead to the pathway of BPSD, the Behavioural and Psychological Symptoms of Dementia and the abuse of their rights.

Terms such as:

Behaviour changes

Challenging behaviour

Aggressive behaviour

Inappropriate behaviour

etc

Because of so called behaviours, frontline Healthcare labels the person with BPSD, reaches for the prescription pad and sends them down a pathway to chemical/physical restraint, sectioning/safeguarding and involuntary care.


I was travelling home by train the others day and I overheard a comment

“their emotions got the better of them”

which got me thinking.

If someone you care for lets their emotions get the better of them, would you label it as behaviour reader or would you consider

what has happened

why it has happened

what has caused the person to react that way

is there a way to avoid that happening again


Alternatively, emotions could be seen as a term for the social model of healthcare

So, when a person with Dementia “lets their emotions got the better of them” ask the questions

what has happened

why it has happened

what has caused the person to react that way

is there something we can do to help

Is it pain, UTI, constipation, are they hot cold, strange environment or what may be over 100 causes.

If you deal with the cause, then maybe you will deal with the emotions, reducing chemical restraint, institutionalisation, reducing the costs to healthcare and the abuses of people living with Dementia.


So reach for the prescription pad, treat the causes and prescribe support, services, assessments, rehabilitation and also activities.

Some doctors now prescribe activities, they can be seen on MAR charts in a few care homes. Things like music, arts, dancing, poetry, things that are appropriate and engage a person living with Dementia.

It’s referred to as enablement.

Whilst medication is a valid treatment for some people living with Dementia as with any chronic terminal disease, only when a proper assessment is done and all avenues have been followed to treat the causes, should medication be used.

Maybe it is time to change the label and move from the negative language of behaviour to a more positive term such as Emotion.



 

The United Nations – Universal Declaration on Human Rights (UDHR)

The Universal Declaration of Human Rights (UDHR) is a historic document that was adopted by the United Nations General Assembly at its third session on 10 December 1948 as Resolution 217 at the Palais de Chaillot in Paris, France. Of the then 58 members of the United Nations, 48 voted in favour, none against, eight abstained, and two did not vote.

The Declaration consists of 30 articles affirming an individual’s rights which, although not legally binding in themselves, have been elaborated in subsequent international treaties, economic transfers, regional human rights instruments, national constitutions, and other laws. The Declaration was the first step in the process of formulating the International Bill of Human Rights, which was completed in 1966, and came into force in 1976, after a sufficient number of countries had ratified them.

Some legal scholars have argued that because countries have constantly invoked the Declaration for more than 50 years, it has become binding as a part of customary international law.

However, in the United States, the Supreme Court in Sosa v. Alvarez-Machain (2004), concluded that the Declaration “does not of its own force impose obligations as a matter of international law.”Courts of other countries have also concluded that the Declaration is not in and of itself part of domestic law.

A more detailed expose of the articles in Claiming Human Rights

The UK ratified and became a State Party to the UN Convention in 2009. As a binding international legal instrument, this requires the UK to adhere to the obligations contained within the UN Convention, and to implement the requirements of the Convention in good faith.

Article 26 of the Vienna Convention on the Law of Treaties states “every treaty in force is
binding upon the parties to it and must be performed by them in good faith”. This is the
internationally recognised principle of pacta sunt servanda (treaties shall be complied with), a principle of international law that underlies the system of treaty-based relations between sovereign States.

The Universal Declaration is not a treaty, so it does not directly create legal obligations for countries.

“However, it is an expression of the fundamental values which are shared by all members of the international community. And it has had a profound influence on the development of international human rights law. Some argue that because countries have consistently invoked the Declaration for more than sixty years, it has become binding as a part of customary international law.” Australian Human Rights Commission.

“The 1948 United Nations Declaration of Universal Human Rights and all subsequent Human Rights Treaties can now enable the 50 million people living with Dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.” World Health Organisation Adopts Global Action Plan on Dementia


Resources

Amnesty International UK : A summary of the 30 articles of the Universal Declaration of Human Rights

World Health Organisation

Dementia Alliance International , Also

Global Alzheimer’s and Dementia Action Alliance

Alzheimer’s Disease International

The UK is also a signatory to the European Convention on Human Rights

Alzheimer’s Society : View on equality, discrimination, and human rights

Alliance Scotland : Being Human: A human rights based approach to health and social care in Scotland

Australian Journal of Dementia care : Human Rights, Disability and Dementia

Dementia Action Alliance : Dementia Statements

Peter Mittler : Dementia and Human Rights

Age UK : Human Rights

Scottish Care : Human Rights and Dementia

Dementia Alliance International : The human rights of people living with dementia: from Rhetoric to Reality

The Journey Continues…

After the first 4 years of my journey with Dementia, 2018 marked the beginning of change in my journey with Dementia.

As new year dawned, I was still in that dark place following my diagnosis of Alzheimer’s and Frontotemporal Dementia in March 2017, without the support of the NHS or local Authorities

By the end of March 2018, with the help of the A Good Life with Dementia course ,I had begun to re-engage with life and had begun to reinvent myself.

By the end of June, I had climbed out of the metaphorical Dark Hole  and begun to leave the black hole behind.

 

 

This article will be gradually updated over time.

Inclusive, State Funded, Rights Based, Post Diagnosis Support, Rehabilitation, Benefits and Services.

The single most important thing that can happen to a person and their family when a diagnosis of Dementia is given is inclusive, state funded post-diagnosis support and services, including assessments,rehabilitation and if eligible, benefits, which continue throughout their journey with the person with Dementia and their carers/family.

From mine and others experiences allowing a person to fall into that black hole is a form of abuse.

With other chronic terminal diseases there will be someone to take you to a side room with the obligatory cup of tea, who will discuss your diagnosis, sort out assessments and services and develop a care plan to enable you to continue to live with your diagnosis.

Something as simple as the A Good Life with Dementia course where people living with dementia are the tutors can have a major impact on a persons journey with Dementia.

The plan should also have a rights based approach under the UN Conventions and remove the medical model of healthcare that leads to the BPSD pathway of chemical/physical restraint, sectioning/safeguarding and involuntary care.

To enAble and engage a person with Dementia and their carers/family not disAble and disengage so that they may live their lives within the reducing boundaries of their particular Dementia.

What about benefits. Well the UN CRPD states

Article 28 – Adequate standard of living and social protection

 1. States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures:

a) To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs;

b) To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes;

c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;

d) To ensure access by persons with disabilities to public housing programmes;

e) To ensure equal access by persons with disabilities to retirement benefits and programmes.

Ideally, we have a system whereby upon diagnosis you qualify for benefits BUT not immediately for payments.

Between your diagnosis and the next Neurologist appointment you should see an Occupational Therapist, Physiotherapist, Dietitian, Speech and Language Therapist, have a hearing and sight test at your local Hospital;

 

Why is Dementia different, we may suffer at times but do we want to be seen as suffers? For me I would rather be seen as a fighter, empowered to live life within the limits of my diagnosis.

Why must we be subjected to the negative narrative of the media and the abuses of a system that ignores our rights.

As the words of your diagnosis are spoken, your life and that of your family changes forever.

The challenges vary depending on the age you are diagnosed, other medical conditions, whether you still work, have a mortgage, young family, the list goes on, running around in your head.

You cannot hear what the Doctor is saying anymore, the media perceptions of Dementia rear up, fear and anxiety take over and the metaphorical dark hole beckons.


Excerpts from various UN declarations:

Declaration on the Rights of Disabled Persons proclaimed by General Assembly resolution 3447 (XXX) of 9 December 1975 includes:

6. Disabled persons have the right to medical, psychological and functional treatment, including prosthetic and orthotic appliances, to medical and social rehabilitation, education, vocational training and rehabilitation, aid, counselling, placement services and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration.

United Nations Principles for Older Persons Adopted by General Assembly resolution 46/91 of 16 December 1991 includes:

5. Older persons should be able to live in environments that are safe and adaptable to personal preferences and changing capacities.

In the OHCR Standard Rules on the Equalisation of Opportunities for Persons with Disabilities Adopted by General Assembly resolution 48/96 of 20 December 1993 includes:

Rehabilitation

23. The term “rehabilitation” refers to a process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functional levels, thus providing them with the tools to change their lives towards a higher level of independence. Rehabilitation may include measures to provide and/or restore functions, or compensate for the loss or absence of a function or for a functional limitation. The rehabilitation process does not involve initial medical care. It includes a wide range of measures and activities from more basic and general rehabilitation to goal-oriented activities, for instance vocational rehabilitation.


Resources

The Fundamental Right to Quality Social Care: The Challenges of the Care Sector and its Workforce

Global Rehabilitation Alliance launched in Geneva

Opinion: Why dementia should be treated like all other NCDs

World Heal Organisation : Global Action Plan on the Public Health Response to Dementia 2017 – 2025

The Department of Health and Social Care, Policy Paper, 8 Jan 2016 : Joint declaration on post-diagnostic dementia care and support

An interim report prepared for the Faculty of Psychologists working with Older People and the Dementia Action Alliance



 

Rant Wednesday

Sadly, the perceptions of our diagnosis has reared it’s ugly head over the last few weeks.

The old chestnut “you don’t look like you have Dementia”

The questioning of our diagnosis.

The media misinformation about cures, how to stop/reverse Dementia 

NewspaperCRap

and advertising campaigns that abuse us by portraying someone with Dementia, hunched over, drooling with wrinkly hands, oh the fear, the dread, the suffering.

With all the negativity that surrounds a younger persons diagnosis of Dementia, the benefit system doesn’t throw bags of £50 notes at us from day one ( I do not receive anything), we do not want your pity, nor do we choose to bring the negativity of a diagnosis to our families.

In 7 Elements of a Proper Diagnosis , Teepa Snow describes what is required to get an accurate diagnosis.

It should also be remembered that there are stages of Dementia, early, middle and late stages for want of a better description.

Each stage has it’s own unique challenges and everyone’s experiences are different.

At diagnosis, we receive

Prescribed Disablement ® (Swaffer 2014-15)
“I believe it happens at the time of diagnosis, not late stage, and that it’s a major contributor to dependence and disability far sooner than they need to occur. Being told to give up living our pre dx life, then go home and get our end of life affairs in order, and no advice to live well is what I mean by PD.” (Kate Swaffer 2018)
In the early and middle stages we do fear and dread the future, we may suffer on the bad days but why on earth can we not be portrayed as fighters.

In the so called end stage, where we become unable to express our needs and subjected to the medical model of BPSD (the Behavioural and Psychological Symptoms of Dementia) which leads to the pathway of chemical/physical restraint, sectioning/safeguarding and involuntary care.

The “medical model”, treats the symptoms of our changes and we become institutionalised into for profit organisations, where we become segregated from our families and society.

Recently “exclusive society” comments have been that:

The young shouldn’t pay for the old

At 40, you should pay more taxes to pay for social care 

A drain on resources

The cause of all the ills of society.

In that case, the counter argument could be that at 40 you shouldn’t:

contribute to education and maternity/child services

contribute to reduced fares and admissions etc

In an “inclusive society” it should be that:

Everyone contributes to everything

Through a fair taxation system, based on the ability to pay

Where everyone is treated equally and given the same opportunities and support

Society contributing inclusively to the needs of everyone:

Regardless of age, religion, ancestry.

Whether they are Heterosexual, LBGTI or BAME

Abled or DisAbled

The “social model” leads us to a pathway of inclusive state funded (via taxation), not for profit, support, services, rehabilitation and financial support, which treat the causes and enables us to live with the decreasing limits of our diagnosis.

People with other chronic terminal diseases are portrayed as fighters and admired.

People with a diagnosis of Dementia are pitied and portrayed as sufferers.

People speak for us and say we are self promoting. 

We speak not for ourselves, but for those that do not have a voice.

People make decisions for us.

We can and should help to make those decisions.

Hold on, you might say reader:

A person with Dementia speaking and campaigning for change, that’s ridiculous.

They are incapable of doing things for themselves let alone be involved in developing the services they need and campaigning for a change in the perception of Dementia.

That’s also the arrogance of some medical professionals, who question our abilities when in fact they are questioning the professional competency of our Neurologists and Neuropsychologists.

In my case, they are not questioning me, they are questioning the competency of 7 professionals involved in my diagnosis.

My GP, the Doctor that evaluated my MRI, the Doctor that evaluated my SPECT Scan, then a Professor and 2 Consultant Neuropsychologists that undertook a total of 7.5 hours of testing over 14 months and finally my Neurologist who gave me the diagnosis.

Then there is also big Pharma and the media, who perpetuate the negative narrative for their own gains, promoting the search for a cure and using the negative narrative of fear and dread.

This might surprise you reader, but we do not choose to have a diagnosis of Dementia.

These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.


Resources

How to spot and challenge negative language in the media

Patient engagement in Dementia: extra support leads to informed contributions

Too tired to blog but too angry and despairing not to

A Few Odd Moments

Human rights do not depend on funding, they are fundamental

Munchhausen by Dementia

Clearly we have much still to do…

 

 

Blogs and Other – September 2018

I start Septembers round up with Wendy Mitchell’s A Letter to Those in Power

Patient engagement in Dementia: extra support leads to informed contributions

Salzburg statement on innovations in Dementia care and Dementia Friendly communities

Please stop staring at my Mum when she has a tantrum

Ageing without Agency: Rethinking old age with Professor Paul Higgs UCL

Communication, what makes it work?

I’m not declining into an old woman

Why does change take so long

People with Dementia are too often undertreated for pain

Context is everything with Antipsychotics and the elderly

7 Elements of a Proper Diagnosis

Imagine, a poem for World Alzheimer’s Day

Understaffed Nursing Homes force residents into incontinence

It’s World Alzheimer’s Day

Why diagnosing Alzheimer’s today is so difficult – and how we can do it better

10 ways to make your home Dementia Friendly

The value of being involved in research

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

Dementia Alliance International published a daily members blog for World Alzheimer’s blog which are titled

“Hello, My Name Is…”

I will leave it to Philly Hare, Shelagh Robinson, George Rook, and Wendy Mitchell to sum up September

Why Dementia Must Be seen as a Disability

Too tired to blog but too angry and despairing not to

A Few Odd Moments

Human rights do not depend on funding, they are fundamental

Munchausen by Dementia

Clearly we have much still to do…