Wednesday, 1 January 2014

Social media and people with dementia


Some time ago I looked at this subject and could not get my head around it very well, so I am having another go



I am wondering whether it is beneficial for people with dementia to use social media, and I think it does by the number of individuals with this illness using blogs, and social media websites such as Twitter and Facebook.

Of course there are various places we can go and I don't know them myself so cannot discuss them

A few years ago I was told by my consultant to write my life story as a way of keeping my brain active.
I then noticed and got involved with social media websites as a way of finding out more about my illness, Early Onset Lewy Body Dementia.



Since then I have found many new friends around the world who were doing the same thing, and we all share the information, on a regular basis.



However this can cover a very large area and many websites, chat rooms and blogs.



Blogs



Blogging allows you to write down items about you and your illness, without expecting anyone to answer.


My consultant told me, that by writing my problems down it would help me to come to terms, with some of them.


It also helps me to look at the other problems we face on a daily basis, such as negative media reports about miracle cures, which are then shot down in flames by researchers. Many of these things cause us a lot of upset and disgust, as we have an illness which has no known cure, and these headlines are down just to sell newspapers, and nothing else


Blogging allows you to look at what is happening around the world where dementia is concerned, because I get some interesting answers at times



Facebook



Facebook is somewhere where we find teenagers etc, who are very interested in learning more about Grandfathers or Grandmothers illness, without being told by parents that its none of your business, or you simply don't understand.


There are many groups on facebook relating to dementia, so its a good place to go for help and support from people in the same position, although we must remember that we may have a similar form of dementia but we may also have vastly different symptoms



Twitter




Twitter seems to a be far reaching web news website, where any news gets maximum coverage at the click of a button.



While not everyone can benefit from social media as they simply were not diagnosed early enough, it is beneficial to many others. I was told to keep my brain active in the hope that it would not slow down, and although this is good advice it does not always work, as we all have good days and bad days, so its a case of doing what you can while you can.


This has a faster response at times but to me its not as personal as the other websites, as you can also get people following who will never agree with anyone



Dementia Websites and Chatrooms



These vary around the world, some are set up for all users, while others prefer to keep people with dementia in a separate section to caregivers or carers. This is for various reasons, but I think the main one is that some Caregivers think that because they have looked after one person with dementia, they know it all, and this causes a lot of upset, among those with the illness.


The reason being that there may be around 12 types of dementia, but within that there are over 120 variations, so whatever happens no two people with the same form of dementia have the same symptoms or problems, so no one answer fits all. I did once speak about social media at one event, and was then spoken to by a professor in dementia, who then said that some of these chat rooms can have the wrong effect on people with dementia.



After his discussion I understood where he was coming from, because although most caregivers or carers are trying to do their best to help us, one or two, push the boundaries too far and cause problems.



I have not come across this type of thing recently so I do not know if it still goes on.

But many chat rooms do a very good job, in supporting people with the illness and their loved ones, and long may they carry on.



There are also a few very good websites which are only for people with dementia. I have visited one or two, but my spelling and grammar are not what they used to be so I cannot go there now as I don't wish to make myself look silly.


 I know we all make mistakes, but I always had pride in my spelling and grammar, so when it slips, you feel like giving up altogether


So to me these places do a wonderful job, providing of course that we can all use the computer and have access to the internet.


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