Finding a vascular dementia specialist - can anyone help?

[Tints]

Hello, this is my first post.

After many months of visits to the doctor my mum has recently been diagnosed with Vascular Dementia . As a family we are still struggling to come to terms with the diagnosis and make sense of the limited information we have received so far.

Does anyone have any advice on how to find a specialist consultant? We are not well off and would be looking for 1 or 2 consultations - just enough time for a specialist to access my mum's health records over the last couple of years and provide some insight into what has happened, and then give us some advice - so we can help my Mum and make sure all aspects of her health are looked after.

I hope I'm not breaking forum rules here. I would be so grateful if anyone has any advice.

Many thanks

 

[Saffie]

Hello and welcome to TP. I'm sorry you've had the need to find us but we are a friendly forum and you will find help and support here.
It was a consultant psychiatrist that diagnosed my husband's vascular dementia, based on his history of long-term diabetes and associated peripheral artery disease.

I hope the following link to a fact sheet from the Alzheimer's Sociey might be of help.
The society ahs many more helpful fact sheets too which you may like to access from the heading on the right hand side of the page.


http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=161

 

[nitram]

Have you talked to your mum's GP about your worries, they may not discuss anything with you without your mum's consent.

Unless the GP thinks that a referral to a consultant is required they will not make one under the NHS, they may however be prepared to give you details of consultants that you could contact privately.

You may not need to see a consultant to satisfy your quest for general information, does your local memory clinic (or whatever it is called in your area) have any dementia advisor, if so a chat with them may be all you need.

 

[john51]

Hi Tints

Like Saffie it was a consultant pyschiatrist (specialising in elderly problems!) who diagnosed my vasular dementia. This was based on the fact that there were 2 damaged regions visible on MRI scans, I had a minor stroke as I came out of anaesthetic following prostate surgery and a large cognitive decline in testing carried out by a consultant neuro-psychologist with tests 12 months apart.
It might be worth asking the consultant who made the diagnosis you are interested in what the basis for their diagnosis was.

Like others I suggest you look at the information available from the Alzheimers Society; it really is about the best there is
John

 

[Saffie]

Just to add that my husband didn't have any scan as the Consultant said that his history made the diagnosis definite without one.

 

[henfenywfach]

Hello, this is my first post.

After many months of visits to the doctor my mum has recently been diagnosed with Vascular Dementia . As a family we are still struggling to come to terms with the diagnosis and make sense of the limited information we have received so far.

Does anyone have any advice on how to find a specialist consultant? We are not well off and would be looking for 1 or 2 consultations - just enough time for a specialist to access my mum's health records over the last couple of years and provide some insight into what has happened, and then give us some advice - so we can help my Mum and make sure all aspects of her health are looked after.

I hope I'm not breaking forum rules here. I would be so grateful if anyone has any advice.

Many thanks

Hi!.sorry youre having to go through this..but I applaud your positive attitude..and need to do the absolute best for your mum.

Im assuming youve been referred to the local memory clinic and the consultant diagnosed the vd???..different areas and countries different..!

My dad was refered by gp to hospital memory team..it took for ever and a day eventually..

I did something quite different then and firstly sought advice from other carers..other people in the know...and looked on internet at universities that have medical schools for any professors that specialised in such subjects..as dementia and adult medicine...can I suggest you type the same..there might be a proffessor somewhere might not be local to you..???.but worth trying!....university professors dealing with dementia in uk...hope this helps..

Sent from my GT-I9505 using Talking Point mobile app

 

[Kevinl]

Hello, this is my first post.

After many months of visits to the doctor my mum has recently been diagnosed with Vascular Dementia . As a family we are still struggling to come to terms with the diagnosis and make sense of the limited information we have received so far.
Many thanks

Hi Tints and welcome to the site.
As your Mother has been diagnosed (and getting that far is an achievement in itself sometimes) then what would you expect to gain seeing a consultant? Assuming your Mother is being given medication to slow the progress of the disease then there really is nothing more that can be done on the medical side of things.
There is a wealth of information on this site covering everything from; medications, financial planning, benefits available, distance caring, to name a just few additionally there's a whole bunch of the nicest people you could ever hope to meet (in a virtual sense) who are living with the condition or caring for someone who will happily listen to anything you have to say and offer their advice on any topic.
Regrettably in life's lottery dementia happens to some people my Mother was diagnosed in her mid 80's and lived with me for the last 3 years of her life, my wife was diagnosed in her late 50's about 4 years ago so I've been to any number of hospital appointments and they can tell you any number of things about the condition, do scans to analysis what's happening in the brain but all they're doing is quantifying what's wrong, unlike many other diseases where they're looking to cure it, nor will they give you any real idea of what's going to happen in the future as the condition is so variable it makes it virtually impossible to predict other than in general terms.
The key thing (I think) is you need to sit down and plan for how you're going to deal with the situation, start by reading as much as possible and start planning for the future. Sorry for going on so long.
K

 

[Saffie]

Kevin, unless Alzheimer's is suspected to be involved alongside the Vascular dementia, i.e. Mixed dementia, there is really no medication that can slow the progress down.

 

[Kevinl]

Kevin, unless Alzheimer's is suspected to be involved alongside the Vascular dementia, i.e. Mixed dementia, there is really no medication that can slow the progress down.

Hi Saffie
From what I'd read on NHS Choices I had got the impression Vascular Dementia was one where you could do things and get a positive result
"Treating vascular dementia and its early warning signs, If caught early, the brain damage caused by blood vessel changes can be halted with lifestyle changes and blood pressure drugs, and dementia can be prevented."
"The lifestyle changes mentioned above are also an important part of treatment for vascular dementia – they may not be able to stop the disease progressing, but they can slow it down."
They also say "Acetylcholinesterase inhibitors such as donepezil (Aricept), galantamine (Reminyl) or rivastigmine (Exelon) may be prescribed for you.
These drugs have been shown to improve confusion and drowsiness in some people with vascular dementia. ....However, these medications are not as effective for vascular dementia as they are for Alzheimer's disease."
I'd vaguely got the impression from this that a diagnoses of vascular dementia offered some hope (the bit of the quote in italics).
I've put the link in below in case Tints wants to have a look, there may be something of use to them.
K
http://www.nhs.uk/Conditions/vascular-dementia/Pages/Treatment.aspx

 

[Saffie]

My husband had Vascular dementia but the medication he received was simply that which he was already receiving for many years prior to his for developing dementia.
That is for his insulin - dependent diabetes - which had led to his PAD, the cause of his Vascular dementia and for high blood pressure.
He was prescribed Aricept for a short while just in case there was some Alzheimer's present, although the CPsych didn't think so, but it didn't appear to help and was discontinued in under a year once he underwent his amputation.

Of course, most heart medication will help circulation but not necessarily the resulting dementia. It certainly didn't didn't for my husband and at every meeting I attended, it was spelt out that dementia medication was not effective for Vascular dementia.
I didn't want the OP to have hopes raised only to be disappointed later but of course they can try medication if the consultant will agree to authorise it.

 

[jeany123]

My husband has vascular dementia and he just has medication he has had since he had a triple heart bypass, we were told there was no medication for vascular dementia just for Alzheimer's


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[Kevinl]

Well, let's not go off topic, NHS Choices suggest there are things that can be tried so bringing them to Tinto's attention seems right to me, maybe they don't work for everyone maybe they don't work at all other people's experiences may be different to yours.
Tinto's problem it "provide some insight into what has happened, and then give us some advice - so we can help my Mum and make sure all aspects of her health are looked after" I didn't write the NHS Choices advise on vascular dementia.
K

 

[john51]

The consultant who diagnosed my vascular dementia stated in his report that as there was only vascular dementia present, I did not qualify for dementia medication.

My drug treatment is statins to keep cholesterol down and clopidogrel to reduce the blood platelet count. This reduces the chances of a blood clot forming in my brain and causing another stroke.

So far as lifestyle changes are concerned, I went back to the gym, and am working out 2 or 3 times a week. I don't know if it having any effect on the dementia or damaged area of the brain but I have lost about 5kg ijn weight (and no regained it over Christmas!). I also feel much more positive. My wife has noticed that I am much more aware of things and can have better conversation after a work out. She tries to organise that we talk about for example money matters after I have been to the gym.
All in all if it makes you feel and act better it must be worthwhile!

John

Hi Saffie
From what I'd read on NHS Choices I had got the impression Vascular Dementia was one where you could do things and get a positive result
"Treating vascular dementia and its early warning signs, If caught early, the brain damage caused by blood vessel changes can be halted with lifestyle changes and blood pressure drugs, and dementia can be prevented."
"The lifestyle changes mentioned above are also an important part of treatment for vascular dementia – they may not be able to stop the disease progressing, but they can slow it down."
They also say "Acetylcholinesterase inhibitors such as donepezil (Aricept), galantamine (Reminyl) or rivastigmine (Exelon) may be prescribed for you.
These drugs have been shown to improve confusion and drowsiness in some people with vascular dementia. ....However, these medications are not as effective for vascular dementia as they are for Alzheimer's disease."
I'd vaguely got the impression from this that a diagnoses of vascular dementia offered some hope (the bit of the quote in italics).
I've put the link in below in case Tints wants to have a look, there may be something of use to them.
K
http://www.nhs.uk/Conditions/vascular-dementia/Pages/Treatment.aspx

 

[Saffie]

Well, let's not go off topic,

The OP didn't mention medication, Kevin, you did.
Tints asked for advice on finding a specialist consultant for Vascular dementia.
To the best of my knowledge, such a person doesn't exist though of course someone else may know differently.
There are Vascular consultants and my husband was seeing one for very many years concerning his PAD. However, he was not knowledgeable about dementia.
The consultant psychiatrist is someone who does know about the different forms of dementia but Tint's mother should have already been seen by one such if he has been given a definite diagnosis of a specific form of dementia. GPs are not really qualified to do so though they may have a degree of knowledge about dementia.

This was why I referred Tints to the specific factsheet on Vascular dementia. The AS has many more such information sheets which are always so helpful and invaluable.
I hope this has helped.

 

[Grey Lad]

The consultant who diagnosed my vascular dementia stated in his report that as there was only vascular dementia present, I did not qualify for dementia medication.

My drug treatment is statins to keep cholesterol down and clopidogrel to reduce the blood platelet count. This reduces the chances of a blood clot forming in my brain and causing another stroke.

So far as lifestyle changes are concerned, I went back to the gym, and am working out 2 or 3 times a week. I don't know if it having any effect on the dementia or damaged area of the brain but I have lost about 5kg ijn weight (and no regained it over Christmas!). I also feel much more positive. My wife has noticed that I am much more aware of things and can have better conversation after a work out. She tries to organise that we talk about for example money matters after I have been to the gym.
All in all if it makes you feel and act better it must be worthwhile!

John

This is similar to the medication regime that Maureen is on. She has had a stroke that may have caused her vascular dementia. Like you John she has been told that there is no medication for vascular dementia and has been discharged from the Memory Service. The cardiologist has taken her off clopidogrel and put her on rivaroxaban as he thought she needed a stronger blood thinner. Like you John she is encouraged to take plenty of exercise and we go for lots of walks..

 

[Tints]

Many thanks

Thanks so much for the response.

The GP referred my Mum to the Memory clinic for the tests and a scan. It was the memory clinic who then went through the results of the tests and scan with Mum (&Dad) and gave the diagnosis. They then passed my Mum back to the GP, so I'm not sure if they have been given access to a specific dementia adviser.

This was in mid November and since then my Dad has been trying to establish who (GP or memory clinic) is looking after my Mums' care. The process of getting the diagnosis, finding out what caused it and establishing what other medical issues need to be monitored has been very stressful for my Mum and my Dad.

Since posting yesterday I gave Admiral Nurses a call and the nurse I spoke with was marvelous and has answered a lot of my questions (and posed a few more).

Thanks again for taking the time to respond

Tints


the

Have you talked to your mum's GP about your worries, they may not discuss anything with you without your mum's consent.

Unless the GP thinks that a referral to a consultant is required they will not make one under the NHS, they may however be prepared to give you details of consultants that you could contact privately.

You may not need to see a consultant to satisfy your quest for general information, does your local memory clinic (or whatever it is called in your area) have any dementia advisor, if so a chat with them may be all you need.

 

[Grey Lad]

Thanks so much for the response.

The GP referred my Mum to the Memory clinic for the tests and a scan. It was the memory clinic who then went through the results of the tests and scan with Mum (&Dad) and gave the diagnosis. They then passed my Mum back to the GP, so I'm not sure if they have been given access to a specific dementia adviser.

This was in mid November and since then my Dad has been trying to establish who (GP or memory clinic) is looking after my Mums' care. The process of getting the diagnosis, finding out what caused it and establishing what other medical issues need to be monitored has been very stressful for my Mum and my Dad.

Since posting yesterday I gave Admiral Nurses a call and the nurse I spoke with was marvelous and has answered a lot of my questions (and posed a few more).

Thanks again for taking the time to respond

Tints


the

Hi Tints

Our Admiral Nurse is great I used to meet her once a month. Seeing her face to face helped me to understand more about the condition and where to go for help.

 

[Tints]

Thanks so much for your reply.

I will ask if we can have another appointment to go through the diagnose again.

When my Mum & Dad were given the diagnosis the consultant did say that Mum hadn't had a stroke/mini stroke. We were a bit surprised by this as she did have quite a rapid loss of some cognitive abilities (especially with her hands) and other symptoms that are flagged up in the Stroke info available online. But, over the last couple of months there have been big improvements with things like writing, getting dressed, fastening buttons/belts etc.

Thanks again and I hope you're doing OK today

Take care

Tints

Hi Tints

Like Saffie it was a consultant pyschiatrist (specialising in elderly problems!) who diagnosed my vasular dementia. This was based on the fact that there were 2 damaged regions visible on MRI scans, I had a minor stroke as I came out of anaesthetic following prostate surgery and a large cognitive decline in testing carried out by a consultant neuro-psychologist with tests 12 months apart.
It might be worth asking the consultant who made the diagnosis you are interested in what the basis for their diagnosis was.

Like others I suggest you look at the information available from the Alzheimers Society; it really is about the best there is
John

 

[Saffie]

The Memory clinic here is overseen by a the Con. psychiatrist who diagnosed my husband at home and the nurses there are pretty clued up on dementia so I would feel reassured if they have made the diagnsosis.

As your mother has been handed back to the GP's care, I would imagine that their part is complete. The only reason for continued attendance at the Memory clinic hereabouts seems to be for the overseeing of the relevant Alzheimer's medication.
As a scan has already confirmed the presence of Vascular dementia, this would not apply though of course, things may be different where you live. It is good that you have an Admiral nurse to call on for advice. We had nothing at all, not even a CPN and were left entirely to our own devices.

 

[Tints]

That is brilliant advice thank you

Yes, we we've been through the memory clinic route for the diagnosis - and the subsequent confusion that follows. Hopefully coming out of the mist a bit now and can concentrate on taking some of the strain from my Dad - who by the way is a hero!

Thanks again for taking the trouble

Hi!.sorry youre having to go through this..but I applaud your positive attitude..and need to do the absolute best for your mum.

Im assuming youve been referred to the local memory clinic and the consultant diagnosed the vd???..different areas and countries different..!

My dad was refered by gp to hospital memory team..it took for ever and a day eventually..

I did something quite different then and firstly sought advice from other carers..other people in the know...and looked on internet at universities that have medical schools for any professors that specialised in such subjects..as dementia and adult medicine...can I suggest you type the same..there might be a proffessor somewhere might not be local to you..???.but worth trying!....university professors dealing with dementia in uk...hope this helps..

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