Regular check ups after cognitive impairment diagnosis?

El31

Registered User
May 21, 2018
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So my mum has a cognitive impairment diagnosis since feb this year.. she has been deteriorating for past 5 years and she is just becoming more and more odd by the day. Her memory is still there but it’s her behaviours and brain scan which led to diagnosis. Anyway, dad is struggling massively, infact we all are and are struggling to be around her without snapping which I don’t want to do but it’s so hard sometimes. I was just wondering how often you should be checked after your first brain scan and diagnosis ? I feel she needs to have a brain scan once a year which we will happily pay for privately but I don’t know if this is the norm. She has deteriorated since her diagnosis and we are just waiting for them to say it’s dementia now , but all the while her memory is there they can’t diagnose dementia apparently
 

canary

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Feb 25, 2014
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South coast
all the while her memory is there they can’t diagnose dementia apparently
That is not actually true.
There are several types of dementia in which memory problems do not appear until much later in the disease. The two most common of these are Frontotemporal Dementia and behaviour variant Alzheimers. Go to the GP and get a referral back to the memory clinic. When you get the appointment make sure that the doctor is aware of the behavioural changes, because there are no tests for this, so if they dont know then they may not pick up on the problem. If you do not want to say things in front of her then make sure that you write a letter outlining the problems and make sure that the clinic receives it before her appointment. I do this and quite often hand the letter discretely to the nurse before the appointment.
 

El31

Registered User
May 21, 2018
64
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That is not actually true.
There are several types of dementia in which memory problems do not appear until much later in the disease. The two most common of these are Frontotemporal Dementia and behaviour variant Alzheimers. Go to the GP and get a referral back to the memory clinic. When you get the appointment make sure that the doctor is aware of the behavioural changes, because there are no tests for this, so if they dont know then they may not pick up on the problem. If you do not want to say things in front of her then make sure that you write a letter outlining the problems and make sure that the clinic receives it before her appointment. I do this and quite often hand the letter discretely to the nurse before the appointment.

Thank you so much for your comment, yes I was aware of frontal lobe dementia but I thought it would have showed on the scan? Maybe not. The scan showed small vessel damage and when I spoke to the memory clinic on the phone before I took her to the appointment they openly told me that if they were going by the scan and behaviours I describe then it’s definitely vascular dementia but she got 98% in the memory test, dad and I couldn’t bloody believe it
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
The symptoms of vascular dementia depend entirely on where the blood vessels are affecting the brain. If the frontal lobes are affected then there will be similar symptoms to FTD. About 50% of people with cognitive impairment have their diagnosis changed to dementia within a year, so if there is continued decline it is worth going back
 

El31

Registered User
May 21, 2018
64
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Thank you very much. I have googled it and her symptoms do point towards that.
I will try and persuade her to go back
 

Sirena

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Feb 27, 2018
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You can certainly ask for another referral when her symptoms worsen. My mother was diagnosed with MCI but within 9 months her symptoms has worsened to the extent I got her another referral to the memory clinic and by that point her test scores indicated dementia. She only ever had one scan, fairly late in the process. Scans aren't necessarily that useful as someone can have bad symptoms and little damage showing, or vice versa.
 

AliceA

Registered User
May 27, 2016
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A new GP requested a further assessment and was told no, the illness is progressive. The 2015 one was sufficient.
She wanted to know but was unable to.
I am going on behaviours but these can alter from day to day and hour to hour.
 

daddyg

New member
Oct 12, 2019
2
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I have been diagnosed with cognitive memory loss,at my local memory clinic about 18 months ago.Just waiting for another appointment as wife says I had a met down 12 days ago.
 

El31

Registered User
May 21, 2018
64
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Thank you for all your replies. Just got to mum and dads and he said the other night at 1am she walked back in to the bedroom fully clothed and said she was going to cash a cheque. I think even if she had gone out she would have realised and come back as she’s normally orientated to place and time but it just goes to show things are getting worse x
 

Rosserk

Registered User
Jul 9, 2019
396
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Thank you for all your replies. Just got to mum and dads and he said the other night at 1am she walked back in to the bedroom fully clothed and said she was going to cash a cheque. I think even if she had gone out she would have realised and come back as she’s normally orientated to place and time but it just goes to show things are getting worse x


Do you think your mum would still pass the memory test? If not then she definitely needs reassessing.

My mum was also good at the memory test first time round but failed miserably the 2nd. She has mixed dementia front temporal lobe and Alzheimer’s. She was still driving her car and she never put a foot wrong but she didn’t have a clue what petrol was and no idea where the petrol cap was. She can also still make a cup of tea but she thinks she lives in a care home. She thinks I’m one of the ladies running it and everyone else is a patient, I’m her daughter. It’s not just about memory it’s also about knowing where she is in life and how she sees it. My mum will show me a picture and will say look at my mums lovely long hair when she was younger, the picture is my mum not her mum but she absolutely believes it’s her mum, she no longer recognises herself or anyone else. But she knows her date of birth address and where she was born.

Write down all the strange things your mum says or does and give the list to whoever tests her next time. X
 

El31

Registered User
May 21, 2018
64
0
Oh gosh, I’m so sorry to hear about your mum, it must be so hard for you
I see it a lot in my job with a social worker so I see the pain families go through.. and I know what’s coming with my mum. For the past 4 years I have thought she had frontal lobe dementia because her personality is so so different. I still think she would prob pass a memory test but I’m going to keep writing things down. I also want her to acknowledge why everyone around her is so concerned but she doesn’t , she thinks she is absolutely fine x

Do you think your mum would still pass the memory test? If not then she definitely needs reassessing.

My mum was also good at the memory test first time round but failed miserably the 2nd. She has mixed dementia front temporal lobe and Alzheimer’s. She was still driving her car and she never put a foot wrong but she didn’t have a clue what petrol was and no idea where the petrol cap was. She can also still make a cup of tea but she thinks she lives in a care home. She thinks I’m one of the ladies running it and everyone else is a patient, I’m her daughter. It’s not just about memory it’s also about knowing where she is in life and how she sees it. My mum will show me a picture and will say look at my mums lovely long hair when she was younger, the picture is my mum not her mum but she absolutely believes it’s her mum, she no longer recognises herself or anyone else. But she knows her date of birth address and where she was born.

Write down all the strange things your mum says or does and give the list to whoever tests her next time. X
 

Rosserk

Registered User
Jul 9, 2019
396
0
Oh gosh, I’m so sorry to hear about your mum, it must be so hard for you
I see it a lot in my job with a social worker so I see the pain families go through.. and I know what’s coming with my mum. For the past 4 years I have thought she had frontal lobe dementia because her personality is so so different. I still think she would prob pass a memory test but I’m going to keep writing things down. I also want her to acknowledge why everyone around her is so concerned but she doesn’t , she thinks she is absolutely fine x


Agh yes denial? That’s a stalwart and will continue throughout your journey.

Just because she can pass a memory test doesn’t mean she doesn’t have dementia. Keep writing everything down x