Hello my husband has over recent months struggling with mood, some confusion which has started to impact his work/ job to the extend he is now on sick leave. Trouble with tasks that have never previously challenged him. Initial discussion with Gp suggested dementia, so memory tests x 2 completed and scored highly, consultant Neurologist appt assessment concluded no dementia just depression, mri showed atrophy normal for age. Bloods normal. So no conclusion at this stage to see Gp again in few weeks. However months have now passed and functioning still compromised and not improving. Has anyone experienced this in the very early stages of this journey ?
No diagnosis but worrying changes
- Thread starter Jess2023
- Start date
Welcome @Jess2023
My husband was treated for depression for a year before he was sent for a scan which diagnosed brain shrinkage and Alzheimer`s.
I think the doctor wanted to eliminate anything else before considering dementia and yes he was depressed but it turned out to be more than that.
I hope you get some answers. It`s awful knowing something is wrong and getting nowhere.
My husband was treated for depression for a year before he was sent for a scan which diagnosed brain shrinkage and Alzheimer`s.
I think the doctor wanted to eliminate anything else before considering dementia and yes he was depressed but it turned out to be more than that.
I hope you get some answers. It`s awful knowing something is wrong and getting nowhere.
This scenario seems unfortunately common with frontal lobe dementia. This can be difficult to diagnose because the short-term memory is not affected in the early stages, so they pass all the memory tests.
I can only suggest that you start keeping a diary about his confusion etc and go back to the GP in a few months, especially if it is getting worse.
I would be requesting another scan.
What about the posh scans? The pets etc?
There are of course some people who never get the scan evidence to go with a partner displaying perfect dementia symptoms, but you have already had a taste of how hard that is.
So don’t be afraid of demanding more.
What about the posh scans? The pets etc?
There are of course some people who never get the scan evidence to go with a partner displaying perfect dementia symptoms, but you have already had a taste of how hard that is.
So don’t be afraid of demanding more.
Just to point out it's possible that short-term memory can be poor yet memory clinic tests are passed with flying colours as in my case. It seems depression is often given as the diagnosis when test results are good. I do wish more weight was given to the symptoms reported by the PWD and/or their family. We keep hearing about the importance of early diagnosis and yet there seems to be no progress in diagnostic techniques.
I agree that @Jess2023 should request a PET scan which will reveal more than the MRI, together with keeping a detailed diary as recommended.
My mum scored 27 out of 30 on the mini test her ct scan showed normal age related shrinkage and she was diagnosed based on family description of behaviour. It was also easy to lead her conversation to a point that showed her confusion.
She was 83 but I suspect if she'd been 63 she might not have been diagnosed. Her short term memory at that stage was fairly good.
Based on canary's comments over the years I think she had mainly frontal lobe issues at that stage. 10 years later her memory is less than 30 seconds.
At a regular memory clinic check up (since discontinued in my area) the nurse said in his opinion the mini tests used for diagnosis were often of little use with previously high functioning individuals. Although I think the diagnosis approach puts too much weight on memory which is only part of dementia.
We detailed all of mum's issues at every single appointment on a written sheet we handed over at the start.
She was 83 but I suspect if she'd been 63 she might not have been diagnosed. Her short term memory at that stage was fairly good.
Based on canary's comments over the years I think she had mainly frontal lobe issues at that stage. 10 years later her memory is less than 30 seconds.
At a regular memory clinic check up (since discontinued in my area) the nurse said in his opinion the mini tests used for diagnosis were often of little use with previously high functioning individuals. Although I think the diagnosis approach puts too much weight on memory which is only part of dementia.
We detailed all of mum's issues at every single appointment on a written sheet we handed over at the start.
I will definitely start a diary. It’s definitely more than the memory tests as you say. My husband is early 50s 😢
My husband is early 50s but luckily (or not) his MRI showed significant brain atrophy inconsistent with age and his ACE III test results are shockingly low so we are in the system now. Functional assessment demonstrates no executive functioning and no longer allowed to drive which is a good thing at last. Awaiting a SPECT scan and surely to goodness will get the formal diagnosis then but it’s been over 2.5 years to get this far. It’s a long lonely road. Do keep a diary and YODT are lovely but ultimately you are in this on your own.
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Thank you for sharing. I hope you get the scan for him very soon. Two and half years is a long time to get to that stage. It seems like the most awful waiting game. It already feels like I am on this journey alone, life changing in the sense my husband will no doubt loose his job, we may need to move and I will become the sole earner. I sense I’m in for a long journey to diagnosis too.
A diagnosis would be so useful.
It might be worth listing all the behaviours that cause you concern and putting them in a post, and seeing if any readers recognise them and what diagnosis was then made. (Perhaps a more unusual type of dementia)
If you had a few best guesses to discuss with the doctors it may help lead them to prescribing the correct scan?
Some of the people that post have some amazing dementia knowledge.
A diagnosis would make it difficult for his company to dismiss him. They may be forced to ‘make adjustments in the workplace’.
A diagnosis would help get PIP if he isn’t working.
It is also possible that a diagnosis will get a reduction of his community charge?
So don’t be afraid to be pushy with the doctors!
An employer only has to make 'reasonable adjustments', not any adjustments that the employee wants. If the employee can't do the job to an acceptable standard after reasonable adjustments have been made then an employer can fairly terminate the employee's contract of employment. In some workplaces an employee may be able to retire early on medical grounds.
A diagnosis is useful for all sorts of reasons but particularly for younger people who are still working or whose partners are still working.
A diagnosis is useful for all sorts of reasons but particularly for younger people who are still working or whose partners are still working.
Id just like to mention that you dont need a diagnosis to get PIP, although it definitely makes it easier to get. It is also not means tested and you can get it while you are still working.
Citizens Advice or Age UK (if h is over 55 yrs old) can help with the form filling - and I would strongly recommend that you get help as it is easy to downplay the problems
Citizens Advice or Age UK (if h is over 55 yrs old) can help with the form filling - and I would strongly recommend that you get help as it is easy to downplay the problems
Some of the symptoms within the workplace ( according to his employer) forgetting conversations, repeating tasks, struggling to engage in conversations, quiet in meetings, sometimes not turning up for meetings. All these things are in stark contrast to his previous behaviours within the workplace, he has a high functioning job in the public sector. At home very apathetic, quite cold to our children and myself. Has seen me as a problem in this situation. Doesn’t seem to have a clue of the stress this situation is causing us or myself.
Evidence of repeating conversations or forgetting things we speak about. If I ask a question that requires a yes or no I rarely get it as he repeats with a regurgitation of the question I’ve asked so having a normal conversation is exhausting. It’s like he’s checking out of the adult world.
The atrophy on his scan was considered normal for his age and is located in the cortical area and some mild cerebellar atrophy too.
I don’t know if this is all very general but would be interesting to know what you experienced members think 🙏I’m finding the changes subtle on occasions and then very obvious other times. Completely exhausting. Think the view off employer was if there was a diagnosis they may consider ill health retirement.
