Getting proper diagnosis ..

[EmJ]

Hi all, my dad has now been told he has dementia. We do not know what type it is. They said it could be more than one type. He’s being referred to dementia services.

He had a CT scan and a Dat scan which ruled out Parkinson’s and Parkinson’s -related dementia. (He has an essential tremor so that’s why they went down this route) They haven’t done any other scans. Only memory tests- Which they say are getting worse.

My family think it’s FTD or Atypical Alzheimer’s but trying to get an actual proper diagnosis is so difficult.

My granny also had a similar type of dementia but she never had scans to determine what type it was.

Any advice on how to get an actual diagnosis of the type of dementia would be helpful. We would like to access the right type of support.

Take care,
Emma

 

[karaokePete]

Hello @EmJ

I think you may be on a 'mission impossible' with that one. My wife had all the tests, scans etc and was then treated as mixed Alz/Vas Dementia. Due to the nature of both physical and mental symptoms my wife was then referred to a Neurologist. The opinion from the Neurologist was "The clinical picture here would fit with a mixed Alzheimer's and Vascular Dementia".

The truth is that it is nigh impossible to be exact about the dementia type until a post mortem exam of the deceased brain.

It's a fact that as dementia progresses all the 'types' can produce similar symptoms due to the extent of the brain damage. In the end, it was the symptoms that determined my wife's needs, not a definition of dementia sub type, and I feel that this is probably the possible outcome for most - based on my reading of the forums over the years.

I wish you and your family strength.

 

[EmJ]

Thanks for your reply.

We have been talking to doctors about my dads behaviour for about 13 years now. He changed completely and we couldn’t understand why. It’s only when he began having memory difficulties that it was taken seriously.

It’s more from the perspective of having the support of families with a similar diagnosis, as it is behaviour and personality changes we are experiencing with some memory issues. Also as my granny had a similar dementia I am understandably concerned that this could be hereditary.

You are right that you meet the needs of the person based on symptoms rather than the type of dementia.

I feel in our circumstances it would just be helpful to have a diagnosis. Not necessarily by scans, but by listening to my dad and my family. It is just frustrating to get told after a year and a half of waiting that it’s dementia and that’s it. We just don’t feel we are being listened too.

Thank you for your kind words.

 

[canary]

Hi @EmJ

When you say that you have been referred to dementia services, does that mean that you have been seen in the memory clinic? If you havent yet, then that is the place to tell them your concerns - especially about the family history. Has he had a normal MRI scan, and did this show anything? There are other scans (PET and SPECT) which are sometimes used to pick up FTD or atypical Alzheimers. Neuropsychology testing can be useful too. If you have been seen there and discharged, it might be worth going back to the GP.

 

[EmJ]

Thank you Canary.

He hasn’t had a MRI scan. He’s had a CT scan and DAT scan. As we are in Scotland, the system is a bit different. He has spoken to an older adult mental health service doctor twice in phone consultations and met them once at the hospital. A year and half later since he was referred to adult mental health services we are told it’s dementia but not given anything, leaflets, booklets etc.

Dementia services means a link worker from Alzheimer Scotland, I think. We hope we will access that soon and they will be able to help us more. I’ve spoken with the charity helpline in the past and found them to be very helpful.

We are going to go back to both the gp and the older adult mental health service to express our concerns. The system is busy helping many families therefore I recognise it’s not easy for anyone involved. But it can be so stressful and frustrating.

Thank you for your advice.