• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Ok so another newbie..


Registered User
Nov 20, 2006
Not quite the place I ever expected to find myself posting, but then I guess we all found that..

My dad in this case, he has got a few memory problems going on now. Having read some of the postings on here his memory trouble seems to have been developing over a much longer time than some. I would have to admit his memory has never been that hot, forgetting names etc - often didn't go down with my girlfriends when I was younger! ;) His hearing is not great either, if there is back ground noise he really struggles to hear what people say.

Some of the things he does now seem to be exaggerations of things he has always done. If he's not interested in something he switches off - propbably some of the reason he doesn't remember stuff, but that's always been the case.

He can vary alot from day to day to, My mum can have a good few days when he is pretty much his normal self then a couple when he seems to be in a different world almost. ( He took the dog for a walk yesterday - forgot the dog! ) Other days even his notoriously bad short term memory seems good.

He's wandered off a few times, driven off without Mum in the car and she's had to run after him, seems if he has to concentrate on one thing, other stuff just goes..

Some of this seemd to start when he started treatment for high blood pressure but it may have been before that, we are talking a good few years though. Things got a chunk worse when my mum went into hospital last year for a week or so, he said he walked in the house and just had a blank on what he needed to do to make dinner and stuff.

Night times seem bad, he'll doze off in the evening and wakeup very confused, then he'll be up at 4am trying to start the day! Normally after one of these nights he is worse that day - being tired really seems to make things alot worse.

One of the biggest problems is getting him to see someone about it, After a few weeks of trying Mum did get him to the Docs on the wease that he was getting his blood pressure treatment checked ( At their docs it takes a phone call with a nurse and the doctor before you can even get an appointment so getting there is a challenge )

The Doc did refer him for a memory test thing after much prodding ( It's just old age apparently ) but when the appoinment came through with Mental Health plastered across the front my Dad just went defensive with a "Your just trying to put me away in a home" type comment and refused to go. They have kept it open with the offer of a home visit should Mum get him to agree.

My mum talks to me about it ( Dad would be upset if he knew how much, she's not supposed to ) but that's about all really. She tends to just go with the flow for now.

It is very frustrating that he won't see a doc preoperly though as he could get help for it.

Well sorry for such a long post, inetested in hearing advicxe and if people have experienced similar along the way.


Grannie G

Volunteer Moderator
Apr 3, 2006
Hello Scott, Your post rings many bells. At this stage it`s not easy to identify the difference between getting older, losing `sharpness` or something more sinister.

I have always been hopeless remembering names, and had the same problem with my son`s friends, when I was younger. I also have a hearing loss, so don`t pick up all the information I need. When I was at school, and little was known about high frequency hearing loss, I was labelled a Dreamer.

Your dad sounds a bit like that. Is he `switching off` because he just can`t be bothered attending? Attending needs energy and concentration, when you`ve a hearing loss. Is he depressed?

On the other hand, when I took my husband for assessment, I was horribly conscious of the `Mental Health for the Elderly` sign, splashed across the entrance. You must admit, it would put most people off. When my husband went, he didn`t notice it, thank goodness. His observation skills and awareness were obviously at a much lower level than your dad`s are.

I think your mum`s doing the right thing for now by `going with the flow`. If the worse comes to the worse and your fears are justified, you`ll know soon enough.

It`s very worrying I know, and you want something more concrete to identify your dad`s behaviour. Try to put yourself in his shoes. Think how you`d feel if everyone was worried about you and trying to get you to do something you didn`t want to do. Think how you`d feel if you were concerned about your own deteriorating health, especially, Mental Health.

Please don`t think I`m being judgemental towards you. I can tell how concerned you are. Your answers will come soon enough.

Take care and please don`t be offended by my response. I am just trying to see it from your dad`s point of view.

Regards, Sylvia


Registered User
Nov 20, 2006
Grannie G said:
Your dad sounds a bit like that. Is he `switching off` because he just can`t be bothered attending? Attending needs energy and concentration, when you`ve a hearing loss.
That's definately the impression we get at times.

Is he depressed?
I don't believe so.

I think your mum`s doing the right thing for now by `going with the flow`. If the worse comes to the worse and your fears are justified, you`ll know soon enough.

It`s very worrying I know, and you want something more concrete to identify your dad`s behaviour. Try to put yourself in his shoes. Think how you`d feel if everyone was worried about you and trying to get you to do something you didn`t want to do. Think how you`d feel if you were concerned about your own deteriorating health, especially, Mental Health.

Please don`t think I`m being judgemental towards you. I can tell how concerned you are. Your answers will come soon enough.

Take care and please don`t be offended by my response. I am just trying to see it from your dad`s point of view.

Regards, Sylvia
Cheers for the response, My dad has always been a proud man and doesn't like others knowing his business. He has said to my Mum that he knows something isn't right and he feels distant but as he can't understand it he'll never admit it to anyone else. I guess it shows he still knows his own mind!

It's things like forgetting to take the dog when he says he's taking the dog not remembering how to get from my house to his when he's tired that's a worry.

He does also seem to have bad circulation, his hands are often very cold...




Registered User
May 24, 2006
Scott you describing whats been going on with my 90 yr old Mother for some years

1) hearing loss truly causes very major problems and for some even hearing aids are ineffective
The background noise thing is a real problem for any one at any age with even mildest hearing loss .........however he should be properly assesed for this PDQ

2) He must also be checked for things like Pernicous Aneamia and hypothyroid as these can trigger dementia symptoms

There is little doubt though that high Blood Pressure triggers TIAs , MID, Sub cortical dementia and other forms of Vascular Dementia

Daily Aspirin is about the only helpful medication to prevent things escalating fast

You do need somehow to get proper tests done on him inc a CT scan so you know just how far the damage has gone


Registered User
May 20, 2006
North East
Hi Scoop

I don't mean to sound frivolant, but gosh, I think I have a lot of those symptoms:eek:

forgetting names etc ,
if there is back ground noise, really struggles to hear what people say.
not interested in something switches off - propbably some of the reason doesn't remember stuff
Fall asleep early evening, then up at 4am!

And I'm only 49!!!

But serioulsy, I know it is hard to see a parent changing - I guessed my mum's memory loss was more than just 'Old Age' but it was a couple of years until it was confirmed - Dad never actually told her - I don't think she would have believed him anyway.

Maybe next time your dad has an appointment at the Doctors, you could write a couple of days earlier to express your concerns, and the Doctor could check him out under the pretext of something else. It might put your mind at ease.



Registered User
Mar 23, 2005
Hi Scoop,

Could recognise a lot of things in your post. My father-in-law was similarly difficult to get to the GP and it had to be in the guise of an appointment for another reason, with my husband slipping the receptionist a note before the appointment started.

It's a shame that he balked at the further appointment due to the Mental Health label (that term can ring alarm bells). My FIL was just told that he had an appointment at the Memory Clinic.

Have you noticed the link to the Alzheimer's Society's factsheets in the top left corner? I'd hate to jump to any conclusions based on some of the symptoms you mentioned (high BP, poor circulation) but you might want to check out the factsheet on vascular dementia:


It's also possible to have both vascular and Alzheimers dementias, which is called mixed dementia.

When you think your father might be ready for another go at a memory clinic appt., it might be worth mentioning that some vascular problems can have an impact on memory that could be confused with Alzheimer's. The only way to tell them apart is through specialist testing (brain scans, interviews with consultants, etc). Treatment is different depending on the root cause, but the sooner detected the better (despite the recent coverage on NICE and Alzheimer's drugs).

It might also be worth letting your mother know about this site.

Take care,



Registered User
Nov 20, 2006
OK so things have moved on a bit...

Hi all,

Dad wasn't too bad over Christmas but the tormoil of no routine did start to mess him about somewhat, took a few days of the normal to get back to his best.

But... he went to the Dr's to ask for a hearing test ( with my Mum), was asked to speek to a trainee before seeing the GP. Then the GP sprung one of the memory tests on him, he didn't do well - My mother actually said it was done very unsympathetically and she got the impression the GP was "Showing off" to the trainee :mad: Dad was very bad for a few days, Mum called in tears a few times.. My dad is now worse than ever about going to the Dr's because of "That woman" won't have anything do do with any of it

After a there normal visit to ours to look after the kids for the afternoon and his normal dose of UK TV Gold he almost snapped back to normal :confused: And was good for a time even going for the blood test without hassle.

He has now had blood tests to check for all the possible other causes, they have come back clear.

Things have been going along as normal, good day here, bad day there - some days he doesn't recognise my Mum others he seems almost normal.

Very little concept of time, asked a few times over Christmas why I wasn't working etc.. the fact my sister and I were off really confused him.

This week though he woke during the night feeling dizzy and was still that way in the morning. Hasn't really known who my Mum is although she said he is a bit better today.

Quite scarey the speed at which he seems to be getting worse now, seems more bad days than good now.

He is still very sharp on Mum speaking to anyone about it though I can tell you, if Mum phones me he sneaks up on her to make sure she isn't talking about him, as far as he is concerned we still don't know - athough even if Mum didn't say anything it is very obvious now that things aren't right. Fortunatley Mum does get chance to call when he is in the garden or walking the dog ( Does that less now ) otherwise I think she'd go barmy..



Registered User
Nov 20, 2006
The GP wanted to arrange for someone to come round and talk to my Dad about it and they phoned and tried but since the meeting with "that woman" my dad won't have any of it. With the tough time my Mum had after the GP incident she can't bring herself to put him through that again well not yet anyway.

They are trying to move house closer to us - at least then hopefully we can be more help. I will read up on the getting help stuff and let my mum know, at least then when she does want it it's at hand.




Registered User
Aug 9, 2005
Hi Scott,

I don't know how you feel about the following suggestion - only ou will know if it is worth trying . . .

Could you talk toyour Dad yourself and say something like:
"Dad, I'm a bit worried about you. Your memory doesn't seem to be as sharp as it used to be. For example, over Christmas you kept forgetting that (sister) and I were off work because of the holidays. What are you doing about it???"

This brings you "into the picture" without your Mum having to go behind his back. You might have to lie to protect her of course (eg. "No, I haven't been talking to Mum - I've been worrying about you myself").

This way you could become openly involved in his care - also if he realises other family members are noticing things, he might take more action. . . . .???
Just a suggestion - Nell.


Registered User
May 20, 2004
Hi Scott and welcome

I would suggest keeping copious notes of his symptoms and making sure the GP or any specialist you manage to involve get sight before any appointments. Aunts specialist was brilliant at her assessments already having the details of the problems she was having. Put in writing the problems that the GP created so he is aware for next time just do it nicely. If its in writing they appear to take more notice!

We muddled through the early days with Dad as we had no idea or understanding of what he(we) was facing. With hindsight many of the symptoms you describe were present in thse early years. Likewise when Aunt deteriorated it seemed to accelerate over a few months.

Good luck


Registered User
Nov 20, 2006
Just read my first post again... seems such a long time ago :(

Things have changed so quickly for my Dad, he really seems to have got worse fast and aged so much in the last 6 months.

My Mum is still doing an unbelievable job of taking care of him, I feel so sad for her some days. I have been more involved with his care now, mainly when Mum has called in dispair and I have gone overn or just as a voice on the phone most days so she gets a sensible conversation and use me as a sounding board.

He has had a hearing test recently, he hid the letter when it arrived ( it was that woman again trying to put him in a home - the GP from my earlier post ) but he did go. He'll be getting hearing aids in both ears in about 20 weeks. He was quite positive about it when we saw him that day, making jokes about it even - very unusual. I do wonder weather some of it was not understanding the test, the Doc doing the test did ask my mum if he had dementia.

Good days are now primarily good mornings, Mum avoids being out in the afternoon if she can as he will go from OK to as she describes "Complete white out" in a moment. Happens more and more. I have had some very odd conversations on the phone with him.:confused:

He still will not see a specialist about it, very stubborn still, and really sharp on the fact that mum maybe talking about him on the phone, he lurks behind the door listeing in..

They are in the throws of moving house closer, Mum is planning to get the EPA done at the same time, her solicitor - they have known for many years - understands the situation and how to deal with mu Dad which is a good help.

The move is going to be stressful we know but the benefit - being a 2 min walk from me and my sister ( although she buries her head in the sand somewhat ) far outweighs the pain - we hope. Our Dr's seems much more helpful too sa maybe we can get him to change his mind. Some days he knows he's moving others no idea at all.

There are two versions of my Mum apparently too, a bossy one and a nice one, several others in the house too by the sounds of it. Neither are his wife on most occaions.

He's often says he needs to go home, can't walk the dog on his own anymore - got lost one night and some friends found him and called my Mum.

What a hateful condition...

Been reading some of the other posts and so many of the things people post is familar.

I'll bet this is a long post now!:eek:


Registered User
Aug 23, 2006
Scoop your line about your father driving off without mum, made me chuckle and I remember when my wife Susan back in 1996 (age 48) reversed her 4 door car out of the garage without shutting the rear door.:) (she had thrown her bag on the back seat) Not a pretty site but not too much damage. 1996 i started noticing things about Susan thats why i mentioned it.
best wishes cris


Registered User
Mar 6, 2007
Wigan, Lancs
Dear Scoop,

I have just read your posts from yesterday and your first post which as 'newbie' I hadn't seen before.

So much of it was familiar. My Dad who is 82 was always bad at names, famous for having a bad memory and so it was hard to pinpoint a time when we realised that it was more than just old age. Eventually like you we did realise that something was wrong as my Dad was becoming steadily worse and we came to terms with the fact that this was dementia. We too didn't know to broach the subject with my Dad without it sounding like 'we think you're not right in the head'.

I can't believe that the GP was so insensitive as to 'spring' a memory test on your Dad. He must have felt humiliated. Fortunately my Dad's GP concentrated more on the 'memory' side of things and the consultant we saw (at home) spoke to me, my Mum and my sister first before speaking with my Dad alone and doing the memory test thing. He then arranged a brain scan and I think this it is easier for the person concerned to concentrate on the fact that there may be a physical reason for the problems rather than using words like 'mental health'

The results of the scan showed a major stroke of which we were all unaware as well as shrinkage of the brain indicative of Alzheimers. My dad was present when the Consultant explained the results of the scan. This was in December and even we found some comfort in the fact that there was a physical cause and not 'just Alzheimers'. Ridiculous I know. It took me until after the New Year to look at the AS web site as this was admitting to myself that Dad had AD. I now have no problem in telling people that my Dad has AD and have had nothing but kindness and sympathy.

Dad was prescribed Ebixa and 3 months on we have noticed an improvement in his speech and his understanding. One thing the Consultant did say to us is that physical exercise is beneficial. He does still walk the dog and finds this a great comfort. May be when he moves closer you or your sister could go with him and hopefully one of you will remember the dog :)

My Dad too sometimes regards my Mum as enemy number 1 and on his last visit to the GP would not let her accompany him. He still gets disorientated with time. Sunday night he put a suit and tie on at 11 p.m. and announced he was going to the office! My mum persuaded him not to! We still have our daily crisis.

I have never mentioned the 'A' word to my Dad but did mention the stroke. He has now dismissed this as 'rubbish' and says that we treat him differently since he saw 'that man' (i.e. the Consultant). He does take his medication though now without question.

Personally, although I am a novice at this thing, I would do whatever you can to get treatment for your dad sooner rather than later. Perhaps when he moves to your GP you could get him to see the GP by saying that he needs a medical before he can register. Hopefully your GP will approach things more sympathetically.

Maybe you could persuade him to seek treatment as a way to avoid him having to go into a home?

I don't know if any of this helps but I know what you are going through and am thinking of you.

Sue xx


Registered User
Nov 20, 2006
Quite a big update now..

Went to Centre Parcs with my kids for the weekend which was nice - however everything kicked off for my Mum!

Basically, Dad switched and wouldn't drive home instead drove around for 3 hours until eventually the police got involved to the keys off my dad and then my Sister picked them up. He spent most of the evening in the A&E dept being checked over - had an urine infection but thats all. He eventually came out of that episode at 7:30ish and started to recognise the people around him. Told he couldn't drive. If it had been a week day they would have kept him in and maybe a brain scan next day but because it was Saturday...:mad:

Anyway Monday, message on the phone when I got home Mum in tears Dad had gone funny and was refusing to let her drive to go out. Since she wouldn't let him drive they were stuck in. I went over and had a chat.

I was his supervisor and he had taken on too harder job - that's how he was when I got there:eek: After a bit of talking I got onto the subject of his memory and he agreed to speak to someone about it - so strike while the iron is hot I spoke to the Mental Health centre he was previously referred to but it was too late in the day so took him to the GP. I spoke to the GP first about it then Dad came in, had a brief test done - very poor result.

He got some risperidone prescribed but as the Dr described it as a horse tranquiliser we haven't given it to him as yet. Didn't really just want to zombify him. Back in work though and a search on Google tells me it's wrong to describe it as that and it's actually an anti psyhcotic but causes a few hours of drowsyness..

Anyway spoke to the Mental Heath centre again, Consultant was alarmed too at the horse tranquiliser reference but said it's the main priority that dad gets assessed ASAP. So we have that happening at Mum and Dad's tomorrow morning.

We will now wait to see where it goes from here, at least he will get a proper assessment, and he does seem to have accepted he can no longer drive - phew.

Will update after the assessment - I suspect it's going to be a little traumatic tomorrow morning.

Thanks for listening..


Registered User
Jan 4, 2006
Scott, traumatic yes, but at least you will know what you are dealing with, and you have people takng notice - well done.
Let us know how the morning goes.
Love Helen


Registered User
Nov 20, 2006
At least we know....

Vascular Dementia is the verdict. After a pretty ok meeting actually, not nice having to tell the consultant about my dad infront of him but my dad was struggling to find words - one of his most common problems.

Memory test showed he has a pretty bad problem but the consultant did say that the words thing probably makes it seem worse. Couldn't fault the chap that came round handled it really well, shows the difference between someone that thinks they know - "that woman" from previous post - and someone that does know I guess.

Dad has been prescribed Memantine (Ebixa), not technically a vascualar treatment but has shown good results and Olanzapine for those more troubled times that come by every so often.

A brain scan has also been set in motion to confirm the diagnosis.

Well a bit traumatic yes but we do know where we are now. I hung around most of the day to reduce the - you've told on me - effect that my Mum would get hit with. I did get chance to tell Dad we had noticed by ourselves for some time, Tablets start tomorrow morning so we will have to see what effect it has.

Just wish we could have got him to see them sooner... :(



Registered User
Mar 6, 2007
Wigan, Lancs
As I may have said my Dad was prescibed Ebixa in December and the GP thought she could see an improvement.

We had a set back last week when we thought Ebixa was causing kidney impairment, but the drug company have informed the consultant that this is unlikely to be the cause of the 'poor' blood test on the kidneys. Another blood test today to see if last week's test was a blip.

I asked the consultant how long before we should expect to see any improvement from Ebixa. He said minimum 6 months and up to 12 months. The memory test was the same - 14- but again my Dad's main problem is speech which might lead to a low score (my view not expressed by the consultant).

We have had a crisis free week (so far!!) and are learning to take one week/one day at a time. Try not to get too buoyed up the highs and by the same token not too depressed by the lows.

Glad you are getting help, even if, like us, you wish that it had come earlier.

Thining of you.

Sue xx


Registered User
Nov 20, 2006
Thanks, consultant didn't give any time scale for the Ebixa so that's usefull info to know. Now we know what dad has got I'll do some more reading.

My dad already gets some fish oil capsules ( Consultant said good ) and another thing we are looking at is the link between Cocoa flavonols and better blood flow to the brain. Probably all long shots but worth a try in any case.

I think the biggest trigger for dramas for my Mum ( The driving ) has been taken out of the equation, until we find something else that triggers it!



Registered User
Aug 29, 2006
SW Scotland
sue38 said:
We had a set back last week when we thought Ebixa was causing kidney impairment, but the drug company have informed the consultant that this is unlikely to be the cause of the 'poor' blood test on the kidneys. Another blood test today to see if last week's test was a blip.
Hi Sue

Just caught up with this thread, and your father's kidney preoblem caught my eye.

We've been having urine problems for nine months now. John produces copious amounts of urine, especially at night. He's had a bladder examimation, and been prescribed medication to calm his bladder. This worked for a while but he is now as bad as ever.

We had his annual review a couple of weeks ago, and the consultant says that it is the effect of the damage to the fronto-temporal lobe, which also controls the kidneys.


He's now recommended a nasal spray, which works on the kidneys rather than the bladder. We haven't got it yet -- still waiting for the prescription.

The point of this rather long-winded explanation is that your father's problem, I think, is also FTD, so it may be the damage rather than the Ebixa which is causing the problems. On the other hand, John also takes Ebixa. :confused:



Registered User
Aug 20, 2006
Surprised that people are newly being prescribed Ebixa, thought that the NICE ruling said that only people already getting it should receive it?

Doubly surprised that anyone is prescribed Olanzapine. The GP did for my Dad, but the consultant instantly changed this because of the risks involved for people with dementia. Maybe its a very small dose?

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