Hi, i am doing a project for uni on Early Onset Dementia., i want to find out from anyone about the diagnosis time scale, and whether if it was made earlier, would it make a difference? Would like to hear peoples opinions also, about health care professionals and their lack of knowledge surrounding EOD. and misdiagnosis
kind regards
My Mum was diagnosed at age 65, but had noticed symptoms for 18 months before this, so obviously EOD but not technically because she had had her 65th birthday by the time she was actually diagnosed. She had had a major cancer operation at age 63 and my personal feeling is that this physical and emotional experience brought forward something that would probably have manifested eventually anyway. My hunch is that she suffered a degree of hypoxia during her cancer operation, which, if was the case then this early presentation may potentially not have happened.
However, the Alzheimer's was still diagnosed pretty early-on in terms of its stage and the galantamine slowed/held her disease for several years, initially at a theoretically sub-therapeutic dose of galantamine because she couldn't tolerate the side effects well. So early diagnosis of any dementia, be in early-onset or otherwise may make a big difference to someone if their disease responds to medication and they can continue with a decent quality of life.
She still drove, cooked & cared for Dad as best she could for several years. When his Alzheimer's was diagnosed, the fear that this brought about sent her own disease into free-fall, but that's another story.
She is now in her 14th year since diagnosis - 15-16th year really since she first noticed symptoms. 20% of her whole life with Alzheimer's! So she has done very well, I think mainly by virtue of having the type that responded to medication. I also think that feeling safe has played a large part in her long term well-being - at times when it was harder to maintain these feelings (when Dad was diagnosed with Alzheimer's, became worse over several years and eventually died), at each stage her disease has progressed dramatically. Not surprising, watching your life partner deteriorate with the disease that you have yourself!
In answer to your question, perhaps she could have been diagnosed 6-12 months earlier, but it is impossible to know how much difference this would have made to the outcome.
Is a long, slow journey what people want though? It wouldn't be my choice.
With warmest wishes,
Daze