For the last 7 years that I know of, people living with Dementia have been safely using Zoom as a communication tool and for support.

During this “Lockdown”, many groups involving people living with Dementia have started safely using Zoom to stay connected and for support.

People with more advanced Dementia’s are supported by their loved ones and/or Carer to take part in Zoom meetings.

My local DEEP group, planned to hold their quarterly meeting via Zoom however, Sheffield NHS Health and Social Care Trust said no because it is not safe.

I wrote a long email explaining why the meeting should happen on Zoom including our rights under UK law via the Equalities Act 2010 and International Law via the The United Nations Convention on the Rights of Persons with Disabilities (CRPD) and offered to discuss the matter with them further.

Sadly they replied the next day, without any discussion, still saying no.

It is another example of professional ignorance and arrogance.

Dementia is seen as an invisible disease/disability and people living with Dementia are invisible.

They have failed in their duty of care.

Duty of care is about enabling us, safeguarding is about protecting us.

It seems we couldn’t possibly use Zoom, we couldn’t possibly use Zoom safely.

What rubbish, we have the right to make mistakes, even if they have negative consequences.

Just because we have a diagnosis of Dementia doesn’t mean we are automatically incapable.

We are made incapable by the way we are given our diagnosis, we are told what we cannot do not what we can do and how we are treated by some Professionals until the day we die.

As time goes on, we are told to sit down, don’t do this, don’t do that, you can’t go out etc.

We get frustrated, we keep being told no, we become angry, we are subjected to Chemical and/or Physical Restraint.

Instead we should be asked what we need to do, asked if the environment is too noisy, stripes, geometric patterns, don’t like whats on TV, need Toilet etc, explain why we can’t do something, explain how we can do it safely, ask us where do we want to go and why.

We are not crazy, Dementia is not a Mental Health Condition, it is a Cognitive Disability as defined by the United Nations.

We may develop Mental Health problems as this insidious disease progresses, but so does anyone with any other Chronic Terminal Disease.

Does Cancer, Heart Failure, Diabetes, COPD, Liver Disease etc come under Mental Health, no because they are physical diseases of our bodies, just like Dementia.

Stop making decisions for us and Start making decisions with us.

 Stop disabling us and Start enabling us.

Start taking a rights based approach to your duty of care.

 Stop abusing our rights under UK and  International Law.

Start treating us as Human Beings.