Husband Just Diagnosed With Vascular Dementia

[dianef]

Well if the start of the journey is this stressful I dread to think what is to come.

He's been on periodic memory review for a few years, the last test score was borderline but as things were deteriorating and worrying him he'd already been to the GP who made a new referral to the same clinic

He had an MRI in August. The appointment to get the results wasn't until January (!!!!!) but I managed to get it brought forward to November. Maybe that was a bad idea as we never got within sniffing distance of a consultant. The doctor was nice enough, but very young (aka inexperienced?). After a friendly chat about symptoms, saying there were meds that might help, and then deferring to someone else (I assume someone more senior) in another room out of earshot we were told symptoms and the scan were in alignment with Vascular Dementia. No meds to stop progression as not Alzheimers but prescribed something else which turns out to be the anti-psychotic, Risperidone. Sent packing with a couple of pamphlets and nothing else.

What the scan showed was never actually discussed.

Two weeks passed and I had to ring up to request a copy of the letter. They tried to blame it on "appalling post" but the GP had it after 3 days, which we only discovered when the pharmacist rang to say she was adding the Risperidone to the repeat prescription. The letter has several grammatical errors and even an incomplete sentence in the diagnosis section. It says the meds were prescribed after "full discussion and in agreement" with both of us, Well letter of the law maybe, but certainly not spirit of the law. Way too much to take on board at that time. Having read up a little, I don't really want him taking anti-psychotics (at least right now) and he has independently reached the same conclusion. I'm not even sure if the prescription is appropriate for VD? Comments welcome...

Managed to get a telephone appointment with the GP for later this week (face to face no chance!) to discuss the diagnosis and prescribed meds. Would be good to go armed with some real life experiences of others.

Swinging between "things are OK and we'll deal with it" to being totally overwhelmed, the tiniest problems looking like mountains, and fearful of the future.

Glad to have found this forum, even if only to vent spleen !!

Thanks in advance for your help & support

 

[canary]

Hello @dianef and welcome to the forum

Everyone imagines that the memory clinic will be a place of information, and ongoing support, guidance and care. Unfortunately, it is not. My experience of the memory clinic was the same as yours - being given a diagnosis and leaving with a fistful of leaflets. Fortunately, one of them was for the Alzheimers Society and I found my way here, which has been the greatest source of information, helpful advice and support.

The scan is used to support a diagnosis of dementia and show which type it is, so the scan your relative had would have shown vascular dementia, and this is the diagnosis. There is no medication to help vascular dementia, only medication to help with the symptoms, Risperidone is usually prescribed where there are distressing delusions, or aggression.

Have a read around the forums - especially "I care for a person with dementia" which will probably give you a good idea of how to deal with the sort of problems you are getting, or start your own thread there and ask. Nothing is off limits

 

[jennifer1967]

when my husband went to memory clinic, it was purely to test and diagnose. nothing more. yes we were sent a few leaflets but that was it and we were sent leaflets. it was 12 march 2020 so lockdown 2 weeks later. the forum was the only contact i had during that time. he has vascular dementia as well. no meds prescribed at that time. has had memantine prescribed now for 2 years for aggression. maybe ask the doctor what the respiridone is for and which symptoms it is treating. discussion with the gp could be the best route.

 

[dianef]

Hello @dianef and welcome to the forum

Everyone imagines that the memory clinic will be a place of information, and ongoing support, guidance and care. Unfortunately, it is not. My experience of the memory clinic was the same as yours - being given a diagnosis and leaving with a fistful of leaflets. Fortunately, one of them was for the Alzheimers Society and I found my way here, which has been the greatest source of information, helpful advice and support.

The scan is used to support a diagnosis of dementia and show which type it is, so the scan your relative had would have shown vascular dementia, and this is the diagnosis. There is no medication to help vascular dementia, only medication to help with the symptoms, Risperidone is usually prescribed where there are distressing delusions, or aggression.

Have a read around the forums - especially "I care for a person with dementia" which will probably give you a good idea of how to deal with the sort of problems you are getting, or start your own thread there and ask. Nothing is off limits

Thanks @canary OH is most definitely not aggressive and although he says he sees other people in the house, (one or other of my sisters evidently although I only have one sibling, a brother) he doesn't seem overly distressed by this. He never seems to "see" them alongside me, and only mentions "the other people" when I've been out of the house and returned, been away in another room for a time and come back in again or first thing in the morning when he sometimes asks if anyone else is staying. I wish I understood how his mind is working

 

[dianef]

when my husband went to memory clinic, it was purely to test and diagnose. nothing more. yes we were sent a few leaflets but that was it and we were sent leaflets. it was 12 march 2020 so lockdown 2 weeks later. the forum was the only contact i had during that time. he has vascular dementia as well. no meds prescribed at that time. has had memantine prescribed now for 2 years for aggression. maybe ask the doctor what the respiridone is for and which symptoms it is treating. discussion with the gp could be the best route.

@jennifer1967 I can't even imagine how hard it must have been dealing with that during lockdown. Thank God for the forum. Am hoping the GP will be able to help

 

[canary]

Thanks @canary OH is most definitely not aggressive and although he says he sees other people in the house, (one or other of my sisters evidently although I only have one sibling, a brother) he doesn't seem overly distressed by this. He never seems to "see" them alongside me, and only mentions "the other people" when I've been out of the house and returned, been away in another room for a time and come back in again or first thing in the morning when he sometimes asks if anyone else is staying. I wish I understood how his mind is working

I think this sounds like confabulations (false memories) caused by the subconscious brain filling in gaps in actual memory. He wont realise what is happening and to him they will seem like real memories. If hes not distressed by them, dont worry

 

[Nana may]

Well if the start of the journey is this stressful I dread to think what is to come.

He's been on periodic memory review for a few years, the last test score was borderline but as things were deteriorating and worrying him he'd already been to the GP who made a new referral to the same clinic

He had an MRI in August. The appointment to get the results wasn't until January (!!!!!) but I managed to get it brought forward to November. Maybe that was a bad idea as we never got within sniffing distance of a consultant. The doctor was nice enough, but very young (aka inexperienced?). After a friendly chat about symptoms, saying there were meds that might help, and then deferring to someone else (I assume someone more senior) in another room out of earshot we were told symptoms and the scan were in alignment with Vascular Dementia. No meds to stop progression as not Alzheimers but prescribed something else which turns out to be the anti-psychotic, Risperidone. Sent packing with a couple of pamphlets and nothing else.

What the scan showed was never actually discussed.

Two weeks passed and I had to ring up to request a copy of the letter. They tried to blame it on "appalling post" but the GP had it after 3 days, which we only discovered when the pharmacist rang to say she was adding the Risperidone to the repeat prescription. The letter has several grammatical errors and even an incomplete sentence in the diagnosis section. It says the meds were prescribed after "full discussion and in agreement" with both of us, Well letter of the law maybe, but certainly not spirit of the law. Way too much to take on board at that time. Having read up a little, I don't really want him taking anti-psychotics (at least right now) and he has independently reached the same conclusion. I'm not even sure if the prescription is appropriate for VD? Comments welcome...

Managed to get a telephone appointment with the GP for later this week (face to face no chance!) to discuss the diagnosis and prescribed meds. Would be good to go armed with some real life experiences of others.

Swinging between "things are OK and we'll deal with it" to being totally overwhelmed, the tiniest problems looking like mountains, and fearful of the future.

Glad to have found this forum, even if only to vent spleen !!

Thanks in advance for your help & support

Husband has vascular dementia been on two meds for this for the last four years

 

[SeaSwallow]

Husband has vascular dementia been on two meds for this for the last four years

Hello @Nana may and welcome to the Dementia Support Forum. I am sorry to read about your husband's Vascular Dementia. You will find lots of support on the forum from people with a vast experience of various aspects of dementia. You might find it useful to start a thread of your own in the - I have a partner with dementia - area. I have attached a link below.
Here you could tell us about yourself, ask for advice or just let off steam.

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk