Vascular dementia - is there anything different / important to know?

[jojo2018]

Hello,

I have posted concerns about my MIL's memory and behaviour before and got very useful help and advice from this forum (OH and I suspected Alzheimer's, and Drs thought so too), and now we have a diagnosis of Vascular Dementia.

Does anyone have any specific experience of this? Is there anything else we need to know / do, when compared to other types?

Poor MIL walked out of the appointment and waited outside, telling OH to deal with it. She really doesn't want to know anything except which pills to take. Heartbreaking news for her, on top of the cancer

Thanks and best wishes,
Jo

 

[Shedrech]

hi @jojo2018
these pages on the main AS site may be of interest
https://www.alzheimers.org.uk/info/20007/types_of_dementia/5/vascular_dementia

 

[Soobee]

Hi Jojo2018.

My mum had vascular dementia and it was a bit different to other types in her case because her memory wasn't as affected as other things. She had most trouble with mobility and sequencing - that is the order in which to do tasks. She would ask "what foot do I put down first?" when getting out of the car, for example.

Everybody is affected differently by dementia, depending on what areas of the brain are affected and what those areas do, for that person. With vascular dementia the person is more likely to have 'good days' where they seem like they were before. With vascular dementia too, things can suddenly get worse, like a step down in ability rather than a gradual decline in ability. My mum didn't get any of the memory medications because they weren't thought useful for vascular dementia. I don't know if that's changed now.

 

[lemonjuice]

My mum had vascular dementia and it was a bit different to other types in her case because her memory wasn't as affected as other things. She had most trouble with mobility and sequencing - that is the order in which to do tasks. She would ask "what foot do I put down first?" when getting out of the car, for example.

Everybody is affected differently by dementia, depending on what areas of the brain are affected and what those areas do, for that person. With vascular dementia the person is more likely to have 'good days' where they seem like they were before. With vascular dementia too, things can suddenly get worse, like a step down in ability rather than a gradual decline in ability. My mum didn't get any of the memory medications because they weren't thought useful for vascular dementia. I don't know if that's changed now.

Ditto with my mother. Although there may have been Alzheimers in there too.

Vascular tends to go 'stepwise' with large periods of time when things are stable and then a step down. However as time goes on those steps can seem to be more like the elongated, slow, steady decline as in Alzheimers.

I agree generally memory is less affected early on, hence diagnosis is more difficult, but sequencing and mobility are more likely to be affected. With Vascular dementia, much depends on which areas of the brain are affected in the individual, so much more variation is possible.

Poor MIL walked out of the appointment and waited outside, telling OH to deal with it. She really doesn't want to know anything except which pills to take.

I also feel that with vascular Dementia they seem to 'retain' much more of an ability to recognise their own symptoms, but don't want to accept the reality of it.

Wishing you strength.

 

[daughterofpat]

I agree that it depends what part of the brain is affected. My mum has mixed dementia - Vascular and Alzheimers. She was given a memory drug, and this did seem to help, bt then she started refusing all meds, and so this was stopped. Coincidently perhaps, but soon after she lost her mobility, and now cannot walk, feed herself, or reposition herself in bed. It was a sudden step down when she had been stable for a couple of years. However what went first for mum was word finding and her speech - so she lost the ability to communicate what she was feeling, or her needs. Oh so frustrating. Definitely also following simple tasks went early. Good luck x

 

[Spamar]

Each step is a tia, or ministroke. They can be very small, OH just had 1-2 hrs rest, and he was OK, or if the tia was bigger, required a paramedic, who ususally sent him to A&E. A tia can hit anywhere is the brain, so no telling what the result will be.
The first tia OH had, he bent down to put dishes into the dishwasher and as he stood up, said it felt as if his body had disconnected from his brain! Other, smaller ones, I don’t think he knew he was having them!
Good luck, anyway!

 

[Amethyst59]

My husband has vascular dementia. He has one good day...usually followed by three or four bad. By good, I mean he presents as very similar to his normal self. Yesterday he was discussing molecular design with a fellow scientist, today he struggled to follow a conversation at times. He is worse after a nap, he can wake totally confused and not know where he is, or who I am.
At night he is in and out of bed and can quite often pee in the wrong place. He has no memory of this in the morning.
We find that alcohol makes the symptoms of dementia worse. He now has maybe a glass of wine or beer at lunchtime, but never in the evening. It makes the symptoms worse at night.

 

[jojo2018]

hi @jojo2018
these pages on the main AS site may be of interest
https://www.alzheimers.org.uk/info/20007/types_of_dementia/5/vascular_dementia

Thank you! Much appreciated.

 

[jojo2018]

Hi Jojo2018.

My mum had vascular dementia and it was a bit different to other types in her case because her memory wasn't as affected as other things. She had most trouble with mobility and sequencing - that is the order in which to do tasks. She would ask "what foot do I put down first?" when getting out of the car, for example.

Everybody is affected differently by dementia, depending on what areas of the brain are affected and what those areas do, for that person. With vascular dementia the person is more likely to have 'good days' where they seem like they were before. With vascular dementia too, things can suddenly get worse, like a step down in ability rather than a gradual decline in ability. My mum didn't get any of the memory medications because they weren't thought useful for vascular dementia. I don't know if that's changed now.

Thank you, I'm sorry to hear you've been going through this too. It's very true about the 'good days' and this has been confusing when we consider how much help she needs. Also, she has been told there is no treatment that would be useful. To me the memory has been most noticable so I was surprised by the diagnosis, but the confusion is there too. Perhaps we are missing symptoms because we are not always there. Thanks for sharing your experience x

 

[jojo2018]

Ditto with my mother. Although there may have been Alzheimers in there too.

Vascular tends to go 'stepwise' with large periods of time when things are stable and then a step down. However as time goes on those steps can seem to be more like the elongated, slow, steady decline as in Alzheimers.

I agree generally memory is less affected early on, hence diagnosis is more difficult, but sequencing and mobility are more likely to be affected. With Vascular dementia, much depends on which areas of the brain are affected in the individual, so much more variation is possible.


I also feel that with vascular Dementia they seem to 'retain' much more of an ability to recognise their own symptoms, but don't want to accept the reality of it.

Wishing you strength.

Thank you for your reply and I'm sorry you have experienced this too. My OH thought he has seen a sudden worsening on this last visit, which links to the 'stepwise' idea. You mentioned there may have also been alzheimers with your mum - this makes sense to me as MILs short-term memory has been so noticable so I wonder if she has some of that too. Thanks for sharing and for the wishes xx

 

[jojo2018]

I agree that it depends what part of the brain is affected. My mum has mixed dementia - Vascular and Alzheimers. She was given a memory drug, and this did seem to help, bt then she started refusing all meds, and so this was stopped. Coincidently perhaps, but soon after she lost her mobility, and now cannot walk, feed herself, or reposition herself in bed. It was a sudden step down when she had been stable for a couple of years. However what went first for mum was word finding and her speech - so she lost the ability to communicate what she was feeling, or her needs. Oh so frustrating. Definitely also following simple tasks went early. Good luck x

Oh I'm so sorry to hear that. I think MIL might possibly have mixed too from reading more, but we will need to understand and look out for the issues with vascular dementia first I guess. On reflection she has had trouble finding her words sometimes recently, where the short-term memory issues have been more gradual (I think so anyway). There were no drugs offered, but she has so much cancer medication we are struggling to get the carers to get right with her, I can't imagine them coping with anything else. Thanks so much for your message xx

 

[jojo2018]

O

Each step is a tia, or ministroke. They can be very small, OH just had 1-2 hrs rest, and he was OK, or if the tia was bigger, required a paramedic, who ususally sent him to A&E. A tia can hit anywhere is the brain, so no telling what the result will be.
The first tia OH had, he bent down to put dishes into the dishwasher and as he stood up, said it felt as if his body had disconnected from his brain! Other, smaller ones, I don’t think he knew he was having them!
Good luck, anyway!

I'm sorry to hear about your OH. MIL hasn't mentioned anything like this so maybe they were very small. It's a scary idea, especially with her being alone again soon (OH will come back to work at some point soon, leaving regular carers in place). The other day we were making her bed together (she doesn't like help, but allowed me to help her that one time) and suddenly she looked very faint and exhausted and had to lie down. I wonder if that was something? Thanks for sharing xx

 

[jojo2018]

My husband has vascular dementia. He has one good day...usually followed by three or four bad. By good, I mean he presents as very similar to his normal self. Yesterday he was discussing molecular design with a fellow scientist, today he struggled to follow a conversation at times. He is worse after a nap, he can wake totally confused and not know where he is, or who I am.
At night he is in and out of bed and can quite often pee in the wrong place. He has no memory of this in the morning.
We find that alcohol makes the symptoms of dementia worse. He now has maybe a glass of wine or beer at lunchtime, but never in the evening. It makes the symptoms worse at night.

I'm so sorry you and your OH are going through this. Wow to the molecular design discussion (I could not join that at any point), but it sounds like a rollercoaster for you. Thanks for the alcohol tip because we do often take her out for dinner and drinks, and this is something to bear in mind. Thanks again and good luck xx

 

[jojo2018]

Hi @jojo2018. My mother has Vascular Dementia as a result of Small Vessel Disease. She has had several brain scans and there has been no sign of a stroke as such and not all Vascular Dementia is as a result of mini strokes or TIA's although Small Vessel Disease can cause strokes. I believe from the reading I have done that Small Vessel Disease is the biggest cause of Vascular Dementia. Whatever the initial cause, it is difficult to say how one form of dementia will present due to the fact that everyone with the illness is different, as has been said on TP many times. There seems to be no suitable medication for VD as the drugs do not assist with this type of dementia in the way that some drugs do for some people with Alzheimers, by slowing down the progression. Unlike other posters have said, my Mum's memory was the first thing to be affected. She has had the illness for over 10 years now and this has been a very slow, gradual decline with massive 'steps' down. The steps down can be caused by any infection, chest, UTI etc., or any other illness and as in the case of my own Mum, can literally happen overnight. In fact Mum's main and drastic step down after years of a very slight and steady downward path, was caused by 2 concurrent chest infections that left her literally, overnight, unable to care for herself at all. and unable to live alone. Another time, a year or so later, she went to bed and woke up the next morning unable to dress herself anymore. Mum had a heart attack and delirium a couple of years ago and this affected her cognitive decline catastrophically too. The scans showed no sign of a stroke. So I would say that the steps are the main differing symptom for VD. It is not always possible to prepare for them sadly, as they can happen so fast. I am sorry that your MIL has received this diagnosis. You will always receive help on TP.

I am so so sorry to hear this, you've been through so much. Like with your mum, it's my MILs memory that we have really noticed most of all, and I was surprised by the diagnosis, now starting the reading over again without focusing solely on Alzheimers. I feel like there has been 'something' for at least 5 years, but in the last visit there was a more noticeable decline, perhaps the 'step' you mentioned. I'm feeling worried more than before, this seems more unpredictable and we're not always there. This has opened my eyes to the difficulties that so many families are going through and I hope everyone gets strength from this site and other friends and family. Sadly my OH is an only child with no other relatives in the country, as well as being someone who refuses to 'burden' others with his problems. I imagine he is not alone in that. I am happy to have found this site, and thanks again for your words xx

 

[Carolyn B]

I am reading this all very informative. As I have put on other threads my mother is in a Dementia care home even though we haven't yet got any diagnosis. I know self diagnosis isn't great but I will be surprised if my mother hasn' got vascular dementia.

So much of what you have said resonates with me. One day last week my mother seemed so normal I thought does she really need to be in here. Then the next day I go back she's anxious, trying to get changed, talking complete nonsense. The comment about getting in and out of the car so familiar.We go to places she's known all her life and she has no idea how to get to the entrance although she can see it, she can't work out how to get to it. Money wise she is aware she doesn't understand it so just looks to me to buy what she needs.

 

[jojo2018]

I am reading this all very informative. As I have put on other threads my mother is in a Dementia care home even though we haven't yet got any diagnosis. I know self diagnosis isn't great but I will be surprised if my mother hasn' got vascular dementia.

So much of what you have said resonates with me. One day last week my mother seemed so normal I thought does she really need to be in here. Then the next day I go back she's anxious, trying to get changed, talking complete nonsense. The comment about getting in and out of the car so familiar.We go to places she's known all her life and she has no idea how to get to the entrance although she can see it, she can't work out how to get to it. Money wise she is aware she doesn't understand it so just looks to me to buy what she needs.

Hi Carolyn, I'm so sorry to hear that. Do you mind me asking when and how it was decided that she would be better off in a dementia care home? I'm dreading that next step as my MIL would be so very against the idea - and on good days she seems so independent and able I feel terrible for even thinking of it... but it's going to have to happen at some point as she gets more vulnerable and we just don't know when that will be or how. It seems an agonising choice.

 

[Carolyn B]

Very quickly is how it happened! She went from no apparent Dementia symptoms to stage 4 and some of 5 overnight. Unusual apparently but not unheard of. So my circumstances are different to most. Only one other person on the forum had something similar. Very sad as most people take a few years to get to the stage we are at.

She understood we couldn't cope. I work shifts full time 24/7. We agreed between us that a care home was best. We are self funding so I just went round care homes that were appropriate and covered everything we wanted. She visited and liked it. They assessed her and said they would take her. She appears appropriately placed. A few are at her level others are much worse. I guess we were fortunate that she readily agreed.she hated being on her own when I went out. She understood in a home she would never be left alone.

No diagnosis as of yet but GP, Occupational therapist, Social Worker all agree it is dementia. I am told Vascular dementia is the only one that comes on so quick. One professional also suggested it might not be worth putting her through all the tests as all you get is a diagnosis.

It was heart breaking for us all. My mum has lived with us for twenty years.

 

[lemonjuice]

Very quickly is how it happened! She went from no apparent Dementia symptoms to stage 4 and some of 5 overnight. Unusual apparently but not unheard of.

My mother was the same.
Although looking back and knowing what I know now, the symptoms were there. I just didn't recognise them. Or wasn't willing to accept what they were, as so often her behaviour was normal, as is common with Vascular Dementia.

I am told Vascular dementia is the only one that comes on so quick.

I think it's not always a case of coming on quickly as they can be asymptomic / hide their symptoms well / compensate well but an infection or tia or some medical condition suddenly makes them have a big downturn (the downward steps referred to) to make the symptoms more obvious and discernible.

 

[Carolyn B]

She was a bit batty that's all I can say. But she's always been a bit eccentric. She lived with us so already got a lot of help. But she was certainly no worse than anyone who is elderly without dementia. I am not saying it wasn't there but it was quick. Other friends have family with dementia and no one had this happen.

 

[jojo2018]

She was a bit batty that's all I can say. But she's always been a bit eccentric. She lived with us so already got a lot of help. But she was certainly no worse than anyone who is elderly without dementia. I am not saying it wasn't there but it was quick. Other friends have family with dementia and no one had this happen.

I'm so sorry it was so sudden that must have been an awful shock - but pleased she agreed to go and likes it there. It also sounds like it was a very clear case that she needed to be there - for us, it's very much less clear, and she would also never agree. We will probably not force her until something forces us, and hope we don't live to regret the decision