In my past work, I tried to use politically correct language without really understanding the importance, or why people considered it important. Now, I feel the proper words should be used around dementia so I finally get what it is all about with other groups too.

The first bugbear is we do not “suffer”, we have dementia. My dementia is unique to me, and I live with it but do not suffer. It is an illness so should be considered as one for care and support: in the UK we are lucky enough to have the NHS, to care for illnesses so care and support for dementia should be free, not dependent on income, degree of dementia, or postcode lottery. Dementia is not inevitable in old age, so must be an illness. Dementia care and support should be different from that given to the elderly who are otherwise free of illnesses.

“Mental Health” is another word that needs looking at: it has a stigma attached. As far as this layman knows all problems with the brain are either physically or chemically formed. My dementia comes from too much Tau. Depression and psychoses, as far as I can see, are similarly created. Cranial health or some such term would be much better.

I know that it is too late for the outcome of any research I do to help me, but the very act of doing the research helps me in two ways. Firstly, it keeps my mind active, and it also makes me feel useful. People with dementia are made to feel either useless or even faking it as society still sees dementia “sufferers” as being old and rocking in a corner within their own world.

That point leads to why it is important for me to speak out. Society needs to wake up as everyone either has a loved one with dementia or will get it. The authorities do not have the resources necessary. Money is spent on silly things, and yes taxes have to rise. But govt only spends money when there is public pressure to do so. Therefore, society, the electorate, needs to understand the real situation. I do blame the authorities in that we only get told individual stories when they are good news which makes people,think it is ok, or when there is a disaster and everyone closes ranks. They need to publicise what they want to do but haven’t got the money for, especially if there are legal obligations involved. Yes, individual stories might be needed but if they help raise consciousness, good.