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

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HarrietD

Administrator
Staff member
Apr 29, 2014
5,540
London
Expert Q&A discussion.jpg


Hi everyone,

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.

It can be particularly difficult when you're living with - or worried about - a rare dementia, or when you care for someone who is. Alzheimer's is the most common type of dementia, but many are less recognised. If this affects you, you can end up being unsure about where to go for information and support.

Do you have any questions about rare dementias? If so, they will be answering your questions on Tuesday 3 March between 3-4pm.

In their own words:

Rare Dementia Support (RDS) is a UK based service provided by the UCL Dementia Research Centre (DRC). RDS works to support people affected by six rare dementia conditions: Familial Alzheimer’s Disease (FAD), Frontotemporal Dementia (FTD), Familial Frontotemporal Dementia (fFTD), Posterior Cortical Atrophy (PCA), Primary Progressive Aphasia (PPA), Lewy Body Dementia (LBD).

We are here to advise people living with these dementias, and their families and give guidance on living with a particular disease diagnosis. Our aim in our work is to help people affected by one of these rare dementias feel supported and valued.


Not able to make it? Please feel free to post your question on this thread, or if you prefer, send your question to us at talkingpoint@alzheimers.org.uk and we’ll be happy to ask it on your behalf.

We hope to see you here on Tuesday 3 March 😊
 

Sunshine2*

Registered User
May 16, 2019
85
Hello, My husband has had many illnesses over the last 30 years; Aplastic Anaemia. a brain haemorrhage, Epilepsy, Multiple Sclerosis, going into a sudden coma, a suspected mini-stroke and MS Dementia. I’ve been told this Dementia is like Frontal Lobe Dementia. He is disabled, has an indwelling catheter and bowel problems along with Optic Neuritis and Nystagmus. I never know what type of mood he’s going to be in and I’ve pushed him in his wheelchair to many places and I now have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine. At the moment he’s on about going as far away as he can from the house. I care for him 24/7, apart from four hours respite a week I sorted for him, for social interaction and music therapy. His mood changes at the click of a finger. He has had episodes of mumbled speech, which doesn’t make sense. How common is MS Dementia please? I have read that it is quite rare. Any help would be appreciated. Thank you.
 

Sunshine2*

Registered User
May 16, 2019
85
Hello, My husband has had many illnesses over the last 30 years; Aplastic Anaemia. a brain haemorrhage, Epilepsy, Multiple Sclerosis, going into a sudden coma, a suspected mini-stroke and MS Dementia. I’ve been told this Dementia is like Frontal Lobe Dementia. He is disabled, has an indwelling catheter and bowel problems along with Optic Neuritis and Nystagmus. I never know what type of mood he’s going to be in and I’ve pushed him in his wheelchair to many places and I now have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine. At the moment he’s on about going as far away as he can from the house. I care for him 24/7, apart from four hours respite a week I sorted for him, for social interaction and music therapy. His mood changes at the click of a finger. He has had episodes of mumbled speech, which doesn’t make sense. How common is MS Dementia please? I have read that it is quite rare. Any help would be appreciated. Thank you.
Hello, May I also add to the above post that my husband is still in his late fifties, so showing dementia signs from the age of 50, MS diagnosis at 35 and other illnesses started at 27. Thank you.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,540
London
Thanks @Sunshine2* for your question. I'm sorry to hear about your husband - it sounds incredibly difficult to deal with, especially with your own health conditions to think about. Hopefully Nikki and Seb will be able to help during the session.
 

Lawson58

Registered User
Aug 1, 2014
2,147
Victoria, Australia
My husband was diagnosed almost six years ago with 'atypical'Alzheimers. Since then it has been suggested that be might be frontovariant, psychologist classified him as being 'nonamnesiac ' but the latest tag is 'nonclassical'. This all sounds as if no one really knows what he has.

Brief description: He has very little memory of the first thirty years of his life. He cannot use a mobile phone or drive a car but plays bridge several times a week. He is able to take care of his personal hygiene, can prepare ready meals and still has capacity to make decisions. He can be left alone for periods but has the usual problems of forgetting to turn the stove off, those sort of things. Paranoia in the pre diagnosis stages was the most significant red flag that there was a problem.

He worked in several different countries over many years but though he can tell you where he has been, he has no idea of when he was there.

He occasionally can be become confused and his short term memory is showing signs of failing in the last few months. He has recently started to mumble when he talks.

He is quite unlike just about any Alzheimer's patient I have heard of but psychological testing revealed significant cognitive deficits, sufficient for the diagnosis of Alzheimer's.

Would welcome any ideas. Sorry for the long question but time difference between our countries doesn't allow me to participate. Thank you.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,540
London
Thanks so much for sharing @Lawson58. That's no problem about not being able to participate during the Q&A because of the time zones. I hope that we'll be able to get some answers for you next week.
 

Gj4

New member
Feb 4, 2019
2
Does anyone else have problem with sundowning? We think thisnis whats happening to my dad now.
 

K.Pooch

New member
Feb 29, 2020
1
My husband who is 69 has recently been diagnosed with cognitive/pre dementia .
He has a fixation of sitting on the toilet for hours at a time. The times range from 4 to 10 hours.
When I tell him to get up, he says, "I'm getting up" but doesn't.
What should I do?
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,317
Merseyside
My husband who is 69 has recently been diagnosed with cognitive/pre dementia .
He has a fixation of sitting on the toilet for hours at a time. The times range from 4 to 10 hours.
When I tell him to get up, he says, "I'm getting up" but doesn't.
What should I do?
Welcome to DTP @K.Pooch
 

wanderer22

New member
Jan 15, 2020
7
Mum still doesn't have a diagnosis, despite EEG/CT/MRI/lumbar pucture. Edinburgh think it could be sCJD. But she's lived too long and lumbar puncture was negative so National Prion Clinic think it's more likely something-something syndrome, as she also has the 'alien limb' thing too with her right (dominant) hand. But they said this still isn't a diagnosis, more a collection of symptoms given a group name. Do I bother putting my mum through another MRI? She's booked in, but I haven't told her about it yet as she's terrified by the thing, so not sure if she would even go through with it. Will another MRI even help with anything?
 

edy

New member
Feb 29, 2020
2
How do we find out what type of Dementia my mum has who makes the clinical diagnosis ,
edy
 

thorn

Registered User
Aug 7, 2015
1
My dad has been in palliative care since Jan 2019 at this time he was granted chc funding however this ceased in June 2019 as they can only provide funding for a maximum of 13 weeks and since this time we are self funding.
Dad has had a slow decline just recently he has been having chest infections he has been prescribed antibiotics to which he will improve slightly before getting another infection.
Nursing staff think I should give instructions to not give Dad any more antibiotics. The staff have antpirosary meds which can be started at any time.
I wasnt aware I could give instructions
Are you able to provide any further information/advice
 

Lifebuoy44

Registered User
Jun 21, 2014
19
Sleaford, Lincs
Hello Nikki and Seb,
My Wife was diagnosed with Alzheimer's/ vascular demetia mix back in September 2013. In October 2019 it was considered she had Parkinson's disease, because of shaking limbs, dragging gait, etc. However, in February this year, the consultants overturned that diagnosis and stated she has Lewy Bodies dementia in combination with the other two types (Alzheimer's and vascular). What can I do to prepare for this development, please?
I'm told that hallucinations may be common (she already suffers some delusions - which are a different matter, of course) but I'd like to maintain her lifestyle as near to normal as I can, throughout this new condition. Any help or advice would be greatly appreciated. Thank you.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,540
London
Thanks so much everyone for your questions. Nikki and Seb will do their very best to answer them during the Q&A later this afternoon :)
 

Juliematch

Registered User
Jun 24, 2017
159
My dad has Lewy body dementia. I would be interested to know ,if having periods of completely being unconscious or being completely vacant is a normal thing associated with this dementia.We've had many episodes of this , the worse being 8 hours in hospital and showing no signs of waking. We were told that this could be it and he would not come round.He did come round and improved greatly and luckily he’s not gone that long again. Obviously infections make him worse but I just wondered if it’s the Lewy body or something else. Also we have delayed reactions. Eg we ask if he wants a drink , he has his drink and then 2 minutes later will mime having a drink. I would be interested in what you think.Thank you.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,540
London
Hi everyone, and welcome to today's Q&A session on rare dementias. Today's session is with Nikki and Seb from Rare Dementia Support, who have kindly offered their time and expertise :) We'll start by answering the questions that people have posted in this thread.

Nikki and Seb, over to you!
 
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