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

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NikkiZ

Registered User
Feb 25, 2020
12
...and I'm Seb Crutch, a neuropsychologist, sat here with Nikki (hence our joint posts), We're looking forward to addressing some of your questions and queries this afternoon
 

NikkiZ

Registered User
Feb 25, 2020
12
DTP is a useful resource
my question is, though, which other websites would be helpful ?


The are specific to subtypes all can be found via rare dementia support
There are good pca ones and ftd in USA (aftd) and Australia:


ftd Talk do fantastic factsheets

Other helpful websites:

https://www.raredementiasupport.org/

ftdtalk, part of https://www.brainsupportnetwork.org...on-psp-and-cbd-plus-bsns-top-resources-lists/

https://pca-vision.org/
 
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NikkiZ

Registered User
Feb 25, 2020
12
How do we find out what type of Dementia my mum has who makes the clinical diagnosis ,
edy
Thanks for this question. The right person to ask will vary according to age and symptoms. If someone is under 65 years old or has progressive problems affecting skills other than just memory, then a GP referral to a cognitive neurology clinic is probably the best place to start. For people over 65, referral will usually be to a local memory service, but remember you can always request onward referral to a specialist service if appropriate.
 

NikkiZ

Registered User
Feb 25, 2020
12
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?
This sounds very much like it would be helpful to get a referral to the local mental health team, and also to double check there wasn't also an underlying bowel problem (to eliminate any physical problems). The reason for saying this is that to spend such an extended amount of time on the toilet does not seem in keeping with mild cognitive impairment, and is also not typical from our experience for people living with a dementia.
 

NikkiZ

Registered User
Feb 25, 2020
12
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?
We would reassure you that for what is evidently a complex situation and presentation, it sounds as though the team involved are being very thorough. It is often the case that the path to an accurate diagnosis is long and complex, and often requires multiple investigations, including repeat MRI, so that changes in the person's difficulties can be monitored over time. However, it worth saying that care planning - and learning more about some of the symptoms currently experienced and how best to cope with them - doesn't have to await confirmation of the underlying cause. So hopefully the multidisciplinary team can offer advice and support for certain features whilst you await the final diagnosis. For examples, someone with corticobasal syndrome might have that particular constellation of symptoms because of underlying Alzheimer's disease, corticobasal degeneration or another disease. but the symptoms like limb stiffness or difficulty using everyday objects might benefit from occupational therapy interventions, regardless of the underlying cause.
 

NikkiZ

Registered User
Feb 25, 2020
12
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
Sorry to hear about the situation you are now in.
it is really not common for CHC funding to be withdrawn when palliative care is involved especially with your father deteriorating. I would definitely advise you to appeal against this decision. Alzheimer's Society Helpline can offer advice on this.
Regarding your authority to give instructions, I would ensure that a Lasting Power of Attorney is in place or otherwise a Deputyship.
It very much sounds like a Best Interest meeting should be arrange ASAP with yourself and the health professionals involved in the care. That way a plan can be made to make your father as comfortable as possible and to ensure open communication with all parties and all options are explored.
 

NikkiZ

Registered User
Feb 25, 2020
12
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.
We can appreciate it must feel really confusing with all these different labels flying about to describe your husband's condition. It sounds like what is being referred to is behavioural/dysexecutive Alzheimer's disease. This is one of at least three atypical variants of Alzheimer's disease. In the past, the descriptions of Alzheimer;s disease only recognsed the most common memory-led (or amnestic) expressions of the disease. But we now know that Alzheimer's can also lead to a situation in which visual, language, or - as it sounds in this case - behaviour and decision making take the earliest brunt as the disease affects the brain. To reassure, sadly for people with this behaviour-led presentation, memory and then language are often affected as the disease progresses.
 

NikkiZ

Registered User
Feb 25, 2020
12
Does anyone else have problem with sundowning? We think thisnis whats happening to my dad now.
This is common with all types of dementia, as the underlying diseases progress and affect the parts of the brain that regular sleep and alertness patterns.
 

NikkiZ

Registered User
Feb 25, 2020
12
This is common with all types of dementia, as the underlying diseases progress and affect the parts of the brain that regular sleep and alertness patterns.
Some sleep and dementia research suggest that trying to get the person with dementia as much natural daylight and activity as early in the day as possible can help with sleep patterns, but this won't work for all, and further advice can be found on the Alzheimer's Society website.
 

NikkiZ

Registered User
Feb 25, 2020
12
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.
Thanks for this questions. Misdiagnosis of Parkinsons disease in people with Lewy Body dementia is very common. It is really important that the multidisciplinary team are involved in her care now, and she would really benefit from input from occupational therapy, speech and language therapy, dieticians and physio, as well as the Parkinson's disease nurse (despite the name, they are really skilled at symptoms control in people with Lewy body dementia). People with Dementia with Lewy bodies will fluctuate in their ability to manage on a day to day level and will quite often have sleep disturbances. This practical implication of this is that care needs and support you receive need to be base on a 'worst' rather than 'average' or 'best' day, but there are also medications that can have beneficial effects (which you can discuss with your GO or specialist team). There also can be common problems with loss of sense of smell and unfortunately continence emerging at some point, but the GP can help arrange access to local continence service. In relation to the delusions, it is important to realise that it is very difficult and rarely productive to try to reason someone out of these beliefs or to disprove them factually; most people find that trying to respond in a way that minimises distress by offering information when it is sought (e.g. volunteering "I'm your husband" when asked "who are you?", but not when told "you're not my husband") and disraction techniques are often the most productive approach.
 

NikkiZ

Registered User
Feb 25, 2020
12
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.
This sounds really really distressing for you all. Neither of us are neurologists but this sounds highly unusual for DLB and not in keeping with the usual degree of fluctuations most people with the condition report. If your Dad is not been investigated further already, it would be worth seeking review from a cognitive neurologist who might be able to consider whether there are any other underlying causes contributing to these experiences.
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,539
London
Ok, it's time to bring today's Q&A to a close. Thank you so much @NikkiZ and Seb for your incredibly helpful answers and for kindly giving us your time! I hope everyone reading this finds it helpful too.
 
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