Finding a cure?

Everywhere I look at the moment there seems to be a request or a suggestion that I help to raise money to find a cure for Dementia.  Now I know that we need one and that life will be much easier for people in years to come when one is found but realistically that isn't going to happen any time soon.  What those living with dementia need is consistent support with what life is throwing at them right this minute.  When Ash was diagnosed with dementia the first thing that happened was for us to be asked to wait while staff at the memory clinic dispensed the drugs he had been prescribed.  The second thing that happened was that we collected those drugs and made our way out to the car and came home feeling stunned.  We were given no advice about services, who to talk to or where to go.  I found The Contented Dementia Trust by accident and it was the team there who gave Jake and me the strategies that made such a difference to Ash's life.  By accident I discovered a few weeks ago (from someone else who discovered it by accident) that if you have someone in your house who has dementia you may be entitled to a reduction in council tax (we aren't but that's another story).  A friend emailed me a link to a gov.uk website stating what information we would get about services etc if one of us was diagnosed with dementia.  This came from a friend note, not from the health service or local authority.  I had never heard about any of it.   By accident I found the Young Dementia Uk website which has information, blogs etc.  I do agree that money needs to be spent on research and a cure would be amazing but money also, I think, needs to be spent on helping us through this strange land we're now inhabiting rather than planning for a day far in the future.  I know we need research and, as I said earlier, I know we need a cure but neither of those things helps me right here, right now.

My rant is now over for the day.  We are lucky and I know that.  I am computer literate, I have found information that will help, we have friends who have been in this position longer than we have and are willing to share what they have discovered but what about those who aren't so lucky?

One last thing.  For around two years before Ash was diagnosed with dementia we had been visiting the doctor for 'memory problems' and this I presume was well documented in his notes.  He was diagnosed in December  and at the same time developed a very bad back.  He had run out of painkillers and, phoning the surgery to ask for more, I was told that a Doctor would call back to discuss what he needed.  I had to go out and when I got home Ash couldn't remember whether he'd had the call or not.  I went into the surgery the next day and asked what had happened.  Apparently the Doctor had phoned and spoken to Ash but all it said on his notes was 'patient advised'.  I asked 'advised what'? but no-one knew.  I have suggested that they write 'Dementia' and 'memory problems' in larger writing where everyone can see it!  As  I said, joined up thinking is what we need.


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