A busier week this week.

Talking to Masters in Dementia Studies students at Sheffield University, Making a Video for Sheffield CCG and numerous online meetings including one for the “Crystal Clear Advisory Group” where people living with Dementia advise organisations on the language, documentation, website and leaflet layouts.

I have added a second blog to this weeks musings, George Rook’s “Fake news: lies, damned lies, and statistics” talking about Service Commissioners (CCGs) making decisions, this time in Shropshire, completely ignoring our rights under the United Nations Conventions and International Law:

For us, Without us

Deciding what we want, ignoring our needs

It is time for people to stop making decisions for us, to involve us in service provision  and development, to learn and implement into decision making process such United Nations conventions as the Human Rights Convention and the Convention on the Rights of persons with disabilities and to realise that if they do not

they are in breach of International Law as recognised by the UK Government

Would they treat people living with Cancer, Heart Failure, Stroke, Diabetes etc the same as they treat people living with Dementia, of course not, the public outcry would be enormous, so why does society let these people and organisations get away with it.

In time the old guard of the dinosaur medical professionals who only see Dementia in the Palliative stage will be extinct.

A new generation of medical professionals are coming, that get there are 3 stages of Dementia, that the challenges and needs in each of those stages differ, that there is a person inside the fossil of Dementia and that while there is no way currently to divert the asteroid of Dementia wiping away the person over time, there may be some sort of life to lead.

Mother nature rebuilt life on Earth, modern professional are beginning to rebuild the lives of people living with Dementia and their families with new innovative sometimes simple or obvious ways of enablement, upholding their rights and involving them in developing new systems, services and treatments rather than the caveman sledgehammer to crack a nut.

I managed to learn how to put links to video, to click and play rather than having to go on a separate page, in my articles this week.

The simple solution would be to ask someone but I chose to “Google It” as my Grandson Lucas would say, partly in the hope that I may remember what to do better but also giving myself a sense of achievement, learning something new without assistance.




“In the cold light of day, I have some advice for myself. Stop panicking for a minute. Really listen to and understand what is behind mum’s agitation. Remembering advice from Penny Garner, of Contented Dementia, I plan to spend more time noting mum’s questions, trying out different responses and evaluating what works. 

I also need to get better at joining mum in her reality.”

Julia Powell’s blog titled Caring in the Face of Physical Distress and Overwhelming Anxieties

Blog 2

“These commissioners and providers still act as Gods who believe they know what we need and decide what we can have.

It is appalling that they can ignore national models of good practice. Ignore the people who have the disease. Ignore research evidence. 

We have a disease that cannot be cured, or even slowed. The only thing that you can do for us is help us to live well while we can, to not withdraw, to be able to engage in our communities, and to do what makes us smile.”

George Rook’s blog titled Fake news: lies, damned lies, and statistics