I use both Facebook and Twitter, but have serious reservations about them both. And I don’t mean the data gathering and targeted ads either, I want to talk about them and dementia. None of the comments regarding the negative side are aimed at any particular person, because as I try to make clear we are all needed to get things done!

Yes, they can be very positive, in that one can hear stories from around the world and know that you are not alone and also give/get advice.

On the minus side; there are two main problems that I see. Firstly, and this is well known, Twitter especially is an instant medium so one can say something without really thinking things through, and as people can’t read your body language they don’t always take it the way you thought you had written it.

The other problem is a more personal one. Being “stuck” locally, I get jealous of folk with dementia that can, and do, get around promoting living well with dementia. In my darkest times, I get angry because I feel that they are hogging the limelight for personal reasons; “old green eyes”. However, I know that any campaign, in this case dementia, requires folk to work at all levels. Franks Law is a prime example; it is fantastic that Amanda Kopppel and others worked strenuously to get it passed, with all the publicity, at a national level. However, local people all over the country need to prod their LA’s to actually use it properly. We are all vital to get things done, however social media, by its very method, prioritises the loud national people and not the local people work in the background. I have done research that has fed into national work so the importance of national work is well known to me; I even used to be a volunteer member of the board of Friends of the Earth EWNI, so understand the priorities.

I am having to learn not to jump in with a quick, maybe snide, comment on Twitter because being negative, and especially being personal, does not get anyone anywhere. That is why, with one terrible exception, I do not mention party politics.

I repeat there is not meant to be any personal complaints, except against myself! So, please anyone who reads this do not take offence.

This follows on from my post on why I help others.

People with dementia (pwd), often live in their own reality; waiting for their long dead mother/father etc. Also, care homes often use props such as faux old fashioned streets with their residents. I know there is a big debate about the morality of allowing pwd’s to stay in their alternative reality.

Many say we are morally wrong, as we are lying, to encourage it but, imagine; a pwd is anxiously waiting for their long lost mother to arrive. If you bring them back to reality they could get upset, angry etc, but if you misdirect by saying that so and so will be along shortly that should calm them down and they will settle down and return to “reality”.

In my last blog I said that I hate lying, but my endorphins kick in more when I see someone happy, and I really hate myself if they are upset when I could calm them down.

By taking the moral stand, I believe, you are putting your own self above the pwd as you are wanting to feel good taking the moral stand. “The end justifies the means” obviously does not always apply, but no rule can be set in stone; the Mental Capacity Act explicitly states that a persons capacity should be thought of for each separate choice not in the round.

Rightly, or wrongly, my chemical need to help others overrules my personal morals as it is too upsetting. Yes, good care and support can mitigate the need to lie, but all the care and articles in the world cannot stop a pwd entering their own reality. If the faux street allows them to live happily in a different reality, who are we to change that? What is wrong with it? If the props give them contentment, good. I know that I would rather be allowed to live in the past when in the latter stages. I don’t see it as a cosh, just good care and support.

Maybe, it should be asked as part of the Care Plan?