A close relative has recently been diagnosed with dementia and we’re all coming to terms with this unanticipated situation. There are lots of articles on dementia in the papers and TV etc but I guess it was a case of thinking that it wouldn’t happen to any of us. For example, as I’ve now found out (see here)
After the age of 65, the risk of developing Alzheimer’s disease doubles approximately every five years. It is estimated that dementia affects one in 14 people over the age of 65 and one in six over the age of 80.
We’ve had some helpful meetings with the social services and have independently done research and reading up on the condition from the internet. As always the information is fragmented, you have to bring bits and pieces together and then relate that to what seems to be happening in practice (medically, financially and legally).
In parallel with this I’ve talked to friends and neighbours who also happened to be in very similar situations or had been through this recently. Sometimes the whole situation seems a bit chaotic, with numerous organisations involved, although, remarkably, very good results (regarding the care of the relative) seem to be coming out.
In this light one of the most useful pieces of information I came across was a simple bit of honesty (see here):
Be prepared to be persistent to get what you want. Health and social care professionals may not always communicate with each other as well as they should, and you may find you have to explain your situation each time you meet a new professional.
I was quite amazed to read this on an official NHS site but the advice was worth it’s weight in gold.
I wonder how many other organisations would be similarly honest?