Category: Rant Wednesday

Rant Wednesday

Today is not a good day, foggy head and all

Yet the debate continues about how people live with Dementia continues

The 1 stage model vs the 3 stage model

Continually being spoken about, put down when we speak

What would happen if peoples diagnosis of Cancer in stage 1 to 3 were questioned

The Hippocratic Oath is one of the oldest binding documents in history and although not contained in the oath, “Do No Harm” has been accepted since around 1860.

The negative narrative of the media and comments by others Does Do Harm

Frankly, I am sick and tired of it all

Sick and tired of being negatively affected by these comments

The daily struggles to retain something of me and my abilities is challenging enough

When you lose Mental Capacity you do not lose your rights.

When you lose Mental Capacity you retain Legal Capacity and your rights

The rights myself and everyone with Dementia have are universal, they cannot be taken away, cannot be legislated against, cannot be abused, must be respected and upheld by all.

I know the end stage will not be pleasant for my family or myself

I know my family suffer at times

I know my family do not see or understand all the daily struggles I face

I know I suffer at times

I know I am not suffering yet, stop saying I should by your words

I know that by perpetuating the negative narrative around Dementia, people are being abused because they feel they should go home and prepare to die after a diagnosis, not continue living their lives within the reducing limits of their diagnosis

I know it is possible for people to continue to do some of the things they did  before their diagnosis.

I know I may be subjected to BPSD in the future, which is recognised by some professionals and people living with Dementia as an abusive pathway to Chemical/Physical restraint, Involuntary care and sectioning/safeguarding

I know I…

I am sick and tired of being spoken for

I am sick and tired of being told I don’t look like I have Dementia

I am sick and tired of the professional competency of the 7 professionals that have diagnosed my Dementia twice in the last 2 years being questioned.

I am sick and tired of having decisions being made for me

I am sick and tired of being abused by a healthcare system that ignores my rights

I am sick and tired of having my rights ignored under International Law

I am sick and tired of people being told at diagnosis to basically prepare to die

I am sick and tired of people being left to fend for themselves after diagnosis

I am sick and tired of professionals only seeing the end stage of Dementia

I am sick and tired of being told to sit in the corner and deteriorate quietly

I am sick and tired of…

I have the right to be heard

I have the right to take risks, to make mistakes, even if they have negative consequences

I have the right not to be treated cruelly or inhumanely by Government, Society, or by treatment or comment

I have the right to try to live my life within the reducing limits of my diagnosis for as long as I can

I have the right to challenge abusive practices and comments

I have the right to right to respect for my physical and mental integrity on an equal basis with others.

I have the right to take part on an equal basis with others in cultural life, recreation, leisure and sport

I have the right to choose where I live

I have the right to take part in my community

I have the right to take part in public and political life

I have the right to be treated equally with other chronic terminal conditions

I have the right to these rights and others under the United Nations Conventions which are recognised by the UK Government as International Law

I have the right to uphold those rights not just for myself but for other persons living with a disability

I have the right to…

I am now calling for the Organisations that claim to represent us and or protect us to step up and bring this all to an end.

There needs to be a meeting organised by the UN, involving the WHO, the UK Government, EU, and organisations that represent us along with the various groups of people living with Dementia and professionals:

A meeting that must happen now to fully respect our rights under International Law and to stop the harm that the negative narrative causes

To move from the 1930’s to the 21st Century

To stop the questioning of our diagnosis

To reinforce the 3 stages of Dementia

To recognise that there are different challenges and abilities in each stage

To remove the negative narrative

To move to an enabling healthcare system, society and media

To uphold our rights

To remove the disabling effect that the comments on social media, the media and in life generally have

To have access to support, services and assessments from the point of diagnosis

To allow us all to live our lives in peace, to deal with the increasing daily challenges


I am living with Dementia

I am not living well with Dementia

I am living within the reducing limits of my diagnosis

I am not suffering but I suffer at times

I am trying to be positive and appear ok for my family

I am fighting challenges everyday

I am not the same as I was 5 years ago or even a month ago

I am dreading the Palliative stage of Dementia

I am trying to live my life fighting the challenges before me, BUT

I am still me


Rant Wednesday

So the challenges of my Dementia continues to increase.

The foggy head since before Christmas is now compounded by increased tiredness and fatigue.

Hours into days, days into weeks

A side effect of this has been the increasing challenge to write these articles.

Normally ideas would come along and gradually over days form into an article but there may be nothing there but silence.

I peer into my thoughts and find nothing but the whiteness of the fog all around a bit like being in a soundproof room and shutting the door.

There was a time when thoughts and music would be running round in my head incessantly but for now there is silence.

Information goes in but disappears through the fog quickly forgotten.

If I don’t write it down, it is soon forgotten.

People say “I’ve already told you that” or *you don’t look like you have Dementia”

I try not to look and act like I have Dementia.

To ward off the stigma and maintain my self esteem.

To reassure family and delay the time when my Dementia will severely impact on them.

Yet there is still a lack of understanding of a diagnosis of Dementia at an earlier stage.

Still there is the stigma.

Still there is the ignorance.

Still there is the questioning.

Still the comments on social media (again this morning)

People receiving a diagnosis of Cancer do not all get diagnosed at stage 4.

People with Heart Failure do not continually have Heart Attacks.

Many people, following a Stroke, continue to live their lives within reduced limits.

How can someone from Old Age Psychiatry question the diagnosis of people under 65.

There is a big difference between the early stage and Palliative stage.

The younger Doctors understand the difference, older ones are stuck with 40 year old attitudes.

How can I travel alone, they ask

I am not hunched over, drooling and chemically restrained yet.

To travel takes a lot of planning with technology as my aid.

Assistance from the organisation I am travelling to.

It is my right to do so.

I have the right to make mistakes, even if they have negative consequences.

I have the right to take part in public and political life.

I refuse to sit by and watch the rights of people with Dementia and other disabilities being eroded.

I’m damned if I am going to sit at home, sat in the corner, hunched over and drooling, deteriorating and becoming a burden to my loved ones and society.

I’m damned if ignorance is going to stop me having some sort of life, to take part in my community and family life

I’m damned if the discrimination, defamation, libel and slander of others is going to submit me to a life of rightsless abuse.

I am not a burden.

I do not choose to have Dementia

I am a human being, diagnosed not by guess work or Munchausen, but by a Neurologist and Neuropsychologist, evidenced by an MRI and  SPECT Scan which clearly shows my Dementia.


Rant Wednesday

The monster that is the questioning of people’s disabilities has reared it’s ugly head again.

Time and again, people that should know better question our disabilities.

Yet, until they have walked in our shoes, they are not qualified to question our disabilities.

Professionals learn about the mechanics of a disease from textbooks and day to day contact with people with disabilities.

People generally only see the media perceptions of Dementia and experiences of the Palliative stage of Dementia.

They cannot learn the lived experience, they have to live that experience.

They cannot see hidden disabilities but we live and experience them everyday.

With all the stigma around disabilities, no one chooses to have a diagnosis of Dementia or any other chronic terminal disease or disability.

Image may contain: text that says ""If you can't say something nice, don't say nothin' at all!""

Examples of where the United Nations Convention on the Rights of Persons with Disabilities gives us a platform to advocate without our rights being abused.

Our rights under the United Nations Convention on the Rights of Persons with Disabilities include:

Article 1 says why there is a Convention on the Rights of Persons with Disabilities – to make sure disabled people get all their human rights and to encourage everyone to respect the dignity of disabled people.

 Respecting the dignity of a person is recognising them as a person of equal worth to others. This means showing real respect for their feelings, views and privacy, and always treating them as an individual. This is the absolute starting point for human rights – for everyone.

Article 2 explains what different terms mean, like “communication”, “language” and “universal design”.

Article 3 sets out 8 general principles of the Convention. These are:

a)    Respect for each person’s dignity and personhood – like other human beings, disabled people are not the property of other people. You have your own thoughts, feelings, ideas and plans which other people should respect;

b)   All the rights in this Convention belong to every disabled person;

c)    Disabled people are full and equal members of society;

d)   Everyone must be respected. That people are different is a good thing that helps make a better society and world;

e)    Every person must have equal chances in life;

f)    There should be equality between males and females; and

g)   Children usually gain more understanding and ability to do things and make decisions as they get older. There is no fixed age for this: it all depends on the individual child and what you want to do or decide. Countries that agree to this Convention agree to make sure everyone understands that children are usually able to make more decisions over time.

Article 4 of the Convention places a massive duty on governments to do everything they can to make a reality of all the rights for all disabled people living in their country.

Article 25 gives disabled people the right to the best possible health without discrimination. Governments should make sure health services understand the needs and rights of males and females. They must also:

(a) Give disabled people the same range, quality and standard of free or affordable health services as other people get, including services related to sexual and reproductive health

(b) Provide services that specifically meet the needs of disabled people, including children. This includes services that minimise and prevent further disabilities

(c) Provide services as close as possible to where people live, including in rural areas

(d) Make sure professionals give disabled people the same quality of care as non-disabled people, and that they understand and raise awareness of human rights

(e) Make sure it is against the law to discriminate against disabled people in health or life insurance

(f)  Make sure it is against the law to deny food or fluids from people on the basis of their disability.

Article 26 is about the right to be independent and to be fully included in society. It sets out the things that government must do. This includes supporting participation and inclusion in all parts of society and making sure professionals get training to help them uphold the rights in the Convention.

Article 29 gives us the right to be active politically and to take an active role in society.  It includes the right to be a member of a non-governmental organisation and political party.


Shouldn’t professionals be aware of the emotional and psychological damage that their inane comments cause?

Could they be bringing their profession into disrepute?

Should their professional bodies be doing more?

One thing is sure reader, Dementia is no longer a silent disease and people with a diagnosis will not be silenced by the ignorance and the negative narrative of others.


Rant Wednesday

I’m in Brighton for the UK Dementia Congress for 3 days this week and as writing and things generally have been  challenging over the last week or so, for this week, I’ll let the media do the ranting.

Six stories that make you wonder where the Civil Society Government’s are fond of talking about, have gone.

My Dad was taken off in the back of a squad car. His crime? Dementia

‘I go without food’: Struggling pensioners reveal what retirement is like

DWP ignores concerns from disabled people who shun activity over benefit fraud fears

Autistic woman ‘left sick and broken’ by two-year universal credit delay

Atos threatens to call police after claimant questions PIP assessor’s mental health training

Welsh government’s independent living decision ‘threatens support of hundreds’

Hopefully the sea air will put me back on form.

Rant Wednesday

This week I began a series of articles in response to Sir Philip Alstons visit to the UK next month, to investigate the UN’s 80+ concerns about Poverty and Disability abuses in the UK here

Sir Philip’s visit is an opportunity to peel back the facade of what the UK claims to do and what is really happening in the real world in the UK.

It is an opportunity for the UN to reinforce the need for the The United Nations Convention on the Rights of Persons with Disabilities (CRPD) to be fully incorporated into UK law. The UK Government recognises the CRPD as International Law but cherry picks which bits it wants to incorporate into UK Law.

Beneath the surface of the fake news and “Government Initiatives” our rights under the CRPD are being abused as are those living in poverty.

Access to financial support with or without a disability is patchy at best and there is no equality of support and services between conditions.

The proposed Liberty Protection Safeguard and the new BMA guidance being circulated to some members about dehydrating, starving and sedating people to their deaths, but for which there will be no public consultation

The cynical side of me feels that the Recent Global Disability and Mental Health Summits and the coming interim announcement for the Long Term NHS plan which just happens to be being published just as Sir Philip Alston visits the UK, are just a smokescreen to deflect from what is really going on.

Peel back the surface and you will find more barriers than could be found in Paris during the French Revolution.

The ever increasing number and size of forms to access entitlements, the inhospitable assessments carried out by persons who may not have enough knowledge of the conditions they are assessing, who write assessments that bear no resemblance to the person they are assessing and the 1930’s attitudes of the media and society where the young shouldn’t pay for the old, those in poverty and the disabled are a drain on society…

The private companies paid to do what NHS staff are more than capable of doing, which can only benefit the fat cat pay, shareholders and profits of these companies instead of using that money for the benefit of people and the NHS.

The privatisation of the NHS is not a new phenomenon, under Margaret Thatcher, “Care in the Community” led to the selling off of council run care homes and institutions, new Labour introduced a more hostile benefits system with things like the Work Capability Assessments and outsourcing Benefit Assessments, public property is now run for profit.

While prices rise and the number of billionaires grow, more people live in poverty or experience discrimination.

The Disabled, LBGT and BAME communities all experience the abuse of their rights.

The 20th Century could be seen as a time of fighting against injustice, inequality and rights abuses.

The 21st Century appears to be a hostile war led by politicians, media and society against, justice, equality and rights.

Is this really the 21st Century Britain we all want.


Rant Wednesday

There are two things guaranteed in life – Death and Taxes.

In Dementia there is Death and Fees.

It may be controversial reader, but surely we have a right to a good death, if that is our wish.

It is something that Doctors should discuss with us and that we should discuss with our families. We should be able to put our wishes in writing, knowing that our wishes will be respected.

The The United Nations Convention on the Rights of Persons with Disabilities (CRPD) states that people with all Disabilities should have equal access to services, Dementia is a Cognitive Disability according to the United Nations, but does not have equal access to services.

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care.

The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

People living with Dementia, pay for end of life care where some other chronic terminal diseases/disabilities get their end of life care free. Some conditions receive Palliative Care, with Dementia it is unlikely that you will.

As a person living with Dementia who has capacity, I cannot state in the legally binding section of my Lasting Power of Attorney, how and where I wish to die because the Court of Protection won’t accept it, what right do they have to refuse my wishes.

I can only put my choices in the request section which medical professionals do not have to respect.

Why can I not choose, it is my life and therefore my death.

Why should I be subjected to and abused by the pathway of BPSD, the proposed Liberty Protection Safeguards and the new BMA guidance on dehydrating, starving and sedating people to death.

I want to choose where to spend and end my last days.

Some prefer to die in a care home, some at home, that is their right and either way they and their families should be supported practically, emotionally and financially as they would with other chronic terminal diseases.

Everyone should have the opportunity, whilst they still have capacity, whether in good or ill-health, to chose their preferences for a good death, no one should have the right to decide for us or ignore our wishes.


The case for and against assisted dying

Arguments Against the Legal Right to Die and Death With Dignity

Arguments in Favor of Right-to-Die Legislation

Doctors ‘need to start early conversation with patients about dying’

Discussing end-of-life care in dementia

Do We Have A Right To A ‘Good Death’?

A Good Death is an Important Part of a Good Life

Should we be able to choose our own death?

Talking about death isn’t easy, but doctors have to get better


Rant Wednesday

Here we go again, it’s Invisible Disabilities Week in the US, however, in the UK “I” newspaper yesterday Julia Buckley writes about her invisible disability and being verbally abused by train staff because she doesn’t look ill.

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.”


But You LOOK Good! is a book that gives those living with chronic illness and pain a voice. It expresses how they feel, what they need and how others can be an encouragement to them. Read an excerpt here

On Twitter the hashtag #InvisibleDisabilitiesWeek showcases people comments and experiences this week, there are also tweets from @InvDisabilities, and it’s also worth taking a look at the Invisible Disabilities Project

Even in the UK Parliament, this article from 2015 shows that MPs with invisible disabilities can be abused.

People of all ages face stigma and abuse because of their invisible disabilities even the young.

People with genuine invisible disabilities do not game the system, they will be abused by being unable to access things that should be available to them because they have an invisible disability.

When they do access things, they can be taken away because they begin to live with their invisible disability even though they are things that enable them.

Do we have to have a tattoo on our foreheads to stop the abuse?


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.


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


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 


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.


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…