Memory tests for those registered blind

[JayneB6367]

Hello,

We have family friends who are both registered blind and we are concerned one or both are showing signs of dementia (My Mother is advanced stages so we know the signs).

They went along to have a memory test but were sent away because the tests are mainly visual and they cannot test someone who is blind.

Does anyone know of a service that can provide the memory test for the blind community?

Thanks

 

[jenniferpa]

I know there are cognitive tests for the visually impaired, so the issue is accessing them. Has anyone contacted their GP to actually ask? It seems to me that he/she should take point on this.

I would also contact the help line to get some pointers.

 

[nitram]

You could also contact the RNIB helpline

https://www.rnib.org.uk/ourservices/rnibhelpline

 

[nellbelles]

Very surprised to hear that they wouldn’t do the test, until Toms dementia got to a late stage the Doctors gave him the test although slightly modified as obviously some things couldn’t be completed.
It may have been different for him he had been blind for 50 years

 

[maryw]

My Mum had visual impairments but the GP said that just lost her 3 marks on MMSE.

 

[YorkshireLass]

Hi Jayne, my mum is blind and was diagnosed with Alzheimer's in March this year. We had a referral from the GP to the memory clinic and here they asked mum the appropriate parts of the MMSE. She had a low score even whilst compensating for the parts of the test she couldn't see. A CT scan was given a few months later and a return visit to the clinic gave us the diagnosis and the phone number for The Alzheimer's Society followed by a "we'll see you in 3 months to see how you are going on". Mum was "seen" by the elderly mental health team last week (not 3 months but 8 months later). She is no longer able to answer any questions. In our case I can honestly say that a diagnosis has not helped in any way other than confirming what we already suspected. I am as frustrated as so many others on here and I strongly feel that if you were suffering from any other terminal illness the medical profession would try and alleviate your symptoms with medication. I am currently struggling to achieve this for my mum. She is constantly frightened, has no idea where she is even though she is reassured and cries and shows distress.Sometimes only sleeping 2 hours in a 48 hour period. It's dreadful for her and her family. We feel so helpless,

 

[Ludlow]

Hi Jayne, my mum is blind and was diagnosed with Alzheimer's in March this year. We had a referral from the GP to the memory clinic and here they asked mum the appropriate parts of the MMSE. She had a low score even whilst compensating for the parts of the test she couldn't see. A CT scan was given a few months later and a return visit to the clinic gave us the diagnosis and the phone number for The Alzheimer's Society followed by a "we'll see you in 3 months to see how you are going on". Mum was "seen" by the elderly mental health team last week (not 3 months but 8 months later). She is no longer able to answer any questions. In our case I can honestly say that a diagnosis has not helped in any way other than confirming what we already suspected. I am as frustrated as so many others on here and I strongly feel that if you were suffering from any other terminal illness the medical profession would try and alleviate your symptoms with medication. I am currently struggling to achieve this for my mum. She is constantly frightened, has no idea where she is even though she is reassured and cries and shows distress.Sometimes only sleeping 2 hours in a 48 hour period. It's dreadful for her and her family. We feel so helpless,

Hallo YorkshireLass,
My mum is also blind. She was also very frightened and distressed and believed that a neighbour coming in every night to blind her, because each morning when she woke up she thought she had lost her sight the night before. It was perpetual terror for her and anguish for me to find that there was nothing I could do or say that reassured her. I totally agree with your feeling that other terminal illnesses are given medication to improve their quality of life, even though it may shorten it. I had to really press the mental health team for some medication and in the end said to the consultant that I fully understood that anti-psychotics could have serious or even fatal side effects but that given mum's state, that was a risk I was willing to take. Mum was given risperidone, had no side effects at all, and is now content and no longer delusional. It doesn't work like that for everyone - she was lucky that it worked so well for her - but I strongly believe that in our case it was a risk worth taking, given that her quality of life before was non-existent. If you want medication for your mum then keep pressing for it, and let them see that you understand that there are some risks.

On the general point of memory tests for the blind, the dementia nurse tried to give mum a modified test but was not very successful. I thought I could have presented some of the tests to mum in a way that better showed her ability. But in the end they just said "probable mixed dementia" and have just left it at that. No score, no scan or anything else. Mum is very elderly so perhaps they thought it was not worth putting in the resource. I can't say the lack of a "proper" diagnosis has ever bothered me. Mum has problems and I have to deal with them. Giving it a label doesn't make the problems go away, though it is easier to explain to others by just saying mum has dementia.

 

[YorkshireLass]

Hallo YorkshireLass,
My mum is also blind. She was also very frightened and distressed and believed that a neighbour coming in every night to blind her, because each morning when she woke up she thought she had lost her sight the night before. It was perpetual terror for her and anguish for me to find that there was nothing I could do or say that reassured her. I totally agree with your feeling that other terminal illnesses are given medication to improve their quality of life, even though it may shorten it. I had to really press the mental health team for some medication and in the end said to the consultant that I fully understood that anti-psychotics could have serious or even fatal side effects but that given mum's state, that was a risk I was willing to take. Mum was given risperidone, had no side effects at all, and is now content and no longer delusional. It doesn't work like that for everyone - she was lucky that it worked so well for her - but I strongly believe that in our case it was a risk worth taking, given that her quality of life before was non-existent. If you want medication for your mum then keep pressing for it, and let them see that you understand that there are some risks.

On the general point of memory tests for the blind, the dementia nurse tried to give mum a modified test but was not very successful. I thought I could have presented some of the tests to mum in a way that better showed her ability. But in the end they just said "probable mixed dementia" and have just left it at that. No score, no scan or anything else. Mum is very elderly so perhaps they thought it was not worth putting in the resource. I can't say the lack of a "proper" diagnosis has ever bothered me. Mum has problems and I have to deal with them. Giving it a label doesn't make the problems go away, though it is easier to explain to others by just saying mum has dementia.

Hi Ludlow, your mum sounds very similar to mine. I'm so pleased you have found something that has helped her. Like you I am willing to take the risks with medication as mum's current quality of life is non existent, what am I saving her for? More upset and anxiety - no thanks. I have now had yet another meeting with a "nurse" as a result of the initial meeting with the Elderly Care Mental Health team and again been implied that I don't appreciate that Alzheimer's is a progressive disease and mum is progressing rapidly. I was pretty blunt regarding mum's current state and my stance not to accept that her symptoms can't be improved. As a result yet another appointment on the horizon with the consultant as the "nurse" can't prescribe. Not sure what her role actually is other than to fob you off and tell you "they" are very busy! I shall persist that's for sure and if necessary I will seek a private consultant. Crikey mum is paying so much every month for her care she might as well spend some on actually making her life (and mine as I visit every afternoon) better. We'll see!