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

To…


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