My husband showed first signs of dementia in his early 50s, and then there was a prolonged period when he confounded the health professionals as his symptoms weren't altogether typical of AZ. After about 2 years of not really getting anywhere within our local Health Authority, I asked for a referral to a specialist neurology unit outside our local area (we didn't seem to have neurologists in our part of the world!). He finally got a diagnosis of "atypical Alzheimers" about 18 months ago after intensive investigations spanning about 3 years, including several MRIs and a SPECT scan, lumbar punctures (3) and other biochemical and cognitive tests
He is now aged 60, and although the disease progressed slowly until about 6 months ago, I feel that he is now going downhill much faster - he has been on Aricept since the diagnosis, but his local "old age psychiatrist" and CPN and I are agreed that it probably isn't having much effect now and his dose has been reduced with a view to probably stopping it altogether.
He is still at home, but I am finding his increasing confusion, inability to communicate and occasional violent behaviour more and more difficult to deal with. He also has a degree of awareness of his situation and gets very depressed/angry about it, especially the fact that I have to keep all the doors locked as he can walk for miles and has to be found - his best effort so far was when he went missing for 2 days and was found 36 miles away in a fairly deserted rural location. We kept the local police, search helicopter and coastguard search teams quite busy over the last year or two, until I had more secure locks installed and hid the keys.
There are no appropriate respite facilities here for people with young onset dementia, although after I wrote about this to the Chief Executive of the Health Authority and to the Director of Social Services, his CPN suggested that perhaps he would like to try one day a week at a local Day Centre, whose other clients are much older and less physically able.
Much to everybody's surprise my husband seems to enjoy going there once a week, despite the age gap, so I hope that this continues, but to be honest I am desperate for a longer break of a few days or even a week, but all the health professionals agree that there isn't anywhere suitable. I have recently written to our MP about this, so will be interested in his reply.
I have written this partly to get it off my chest to someone who has been through it, and partly to find out if anyone has suggestions as to how I can get a break to charge my batteries. My husband is beyond the point where I can ask anyone (friend, relative or paid carer) to come into the house to look after him - he is a big strong man and really needs somewhere secure and with trained and experienced staff. I have had a Carer's Assessment and I believe that his current Health Care professionals are doing the best they can given the very restricted resources available in this area.
It seems all the more awful because he was such an intelligent, kind, thoughtful and gentle person who wouldn't hurt a fly - and now I am quite fearful of him at times.