The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham, in 2005
It was done as a way of helping newly diagnosed people negotiate the system.
Information pack for those newly diagnosed as having Dementia
This pack was produced by our local branch of the Alzheimer's Society, with help of our local County Durham Dementia hospital.
The pack contents were: -
Information about Lewy Body Dementia, including symptoms and complications etc.
Information about the medication I was being put on
Information about the local groups within our local Alzheimer’s Society branch, including Carers Support, Dementia Cafes, and Discussion Groups for those living with dementia etc.
Phone numbers of our local branch staff
Direct phone number of my hospital consultant, for emergency.
Phone numbers of the Dementia Hospital staff, including an emergency 24-hour number, which got the carer direct to an on-call doctor or nurse at the hospital.
List of local services within our town, including social services etc.
List of activities to help us to remain active
Sadly, as this was a local pack, it had to be stopped because the Alzheimer's Society Central Office, objected, and said it could not be used as it was not a national project.
What a pity they did not think of getting it rolled out around the country, because it was so useful to everyone being diagnosed at that time.
One thing that would have been very useful at the time, was a wallet sized card stating, that I had Lewy Body Dementia, and contact details of my doctor and family, along with my medication etc.
One of these, "I have Dementia" cards was later produced by the Alzheimer's Society’s” Living with Dementia Working Group"
This was such a handy pack to be given after your diagnosis, because the support services were there at the time, and we knew where to go for help.
I found this to be a brilliant idea, as did many carers and people with dementia