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…