I don't think my dad has the right diagnosis - does it matter?

[goonIcantakeit]

My dad has always been extremely quiet and visual. He's also always struggled to make conversation and mixed up words - been in his own little world a great deal of the time with episodes of depression.

He now has a diagnosis of Alzheimers (or that's how mum describes it) which I think is wrong, though he may have some other progressive condition.

His short term memory is fine and not getting worse. I forgot mum's birthday this year :( until the day itself. But he remembered, went round the shop and got her a card and present which he wrapped.

Five years ago he had a failed eye operation and lost not just the vision in one eye but also his "engineering"brain and large parts of his visual perception abilities. I believe, as he does, that some kind of trauma took place during the op and that his naturally inarticulate responses to questions have led to a misdiagnosis.

He has had to relearn various skills that his brain can no longer just "see" - this relearning is fairly successful which seems inconsistent with Alzheimers.

When he was assessed for Alzheimer's they asked him lots of questions he would have struggled to answer even in his 40s - he's always been a bit odd and struggled with language processing.

Does it matter if the diagnosis is wrong? He quite enjoys the orchestra and art club that he gets to go to. But I worry he may miss out on better treatment or get poorer services because they think he has dementia.

Hi goon, I don't know the answer, but I do recall that the mental state tests - the ones with the questions, have their limitations. I wonder what the 'assessment for Alzheimer's' that you refer to was. GPs and other healthcare professionals do screening tests sometimes, but they wouldn't be reliable on their own. My mum was recently and promptly assessed via the specialist memory clinic where she lives, with a set of tests, each of which need to be triangulated against the others. So the consultant psych did the mini mental test (what day is it? etc), then a neuropsychologist visited and did much more detailed questions incl lots of drawing and spatial stuff, and then we had a CT scan. Mum was given her diagnosis of Alzheimer's on Thurs but the consultant did say the CT scan on its own would have been inconclusive, but when the other tests are added, it was possible to reach a diagnosis.

From talking to friends / this section of MN etc, some people are never conclusively diagnosed - so the conclusion around your dad does sound a little odd. Would your mum have explained all the other factors as clearly as you did, so that whoever was assessing would have taken into account?

Haa he had a CT scan? That would show up any deterioration of the white matter of the brain if alzheimers/dementia is there. It may also pick up any old damage if there was something during the eye op.
As to change in his care, no, his health management would be much the same, people with quite significant dementia get active treatment (eg hip op if fractured)
The most important thing is to ensure that health staff do a formal capacity assessment if any large decisions need to be made, (not just guessing if he understands, but sitting down with him and really going through the issue)
But if it were me and my dad, I'd want that diagnosis tightened up. Good luck, maybe get him a gp appointment and go with him ( and insist on a scan if not happened yet)