• 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.

Search results

  1. R

    mum’s diagnosis of Posterior Cortical Atrophy.

    My wife has PCA, she was diagnosed 4 years ago at the age of 61. I am not too fond of the Stages idea, but I guess she is late 4 or early 5. She remains very aware of herself and has very good recall of her history but short term memory is poor and she has little understanding of time. If your...
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    Early onset Alzheimer's.

    Another useful starting point is Rare Dementia Support, http://www.raredementiasupport.org/, since familial Alzheimer’s is not common. Look for information about FAD. If your brother is not independently wealthy, he should be entitled to ESA, provided they agree that he is unable to work. My...
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    My Results are in

    I am so sorry to see your news yellowrose. Can I suggest that you contact Rare Dementia Support? They run support Groups for 5 of the Rare dementias including familial FTD. See http://www.raredementiasupport.org/fftd/ I see you have been in touch with UCL. Rare Dementia Support is associated...
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    Young(ish) siblings and dad's early onset dementia

    Hi Bananabella, I don’t have much to add to the responses you have already had. My wife has PCA, diagnosed in July 2015. Like your father her main issues are visual and spatial. Her short term memory and cognitive functioning remain pretty good, so she is involved in all decisions that affect...
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    Cateracs or something else

    Does your mum also have difficulty seeing things in general or is it just reading? If she has cataracts she would have a pretty uniform issue with seeing clearly, so she would have difficulty making out who people are, seeing objects and birds, etc. Many opticians and even ophthalmologists seem...
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    Nightmares can apparently be a side effect of Donepezil (aka Aricept), perhaps the recent downturn is associated with the change. We have been advised that taking the medication in the morning rather than evening can help with sleep issues.
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    PCA mother diagnosed at 60

    Sorry, I’ve not been on for a while so have only just seen your post. My wife has PCA diagnosed in 2015 when she was 61. She is now late in stage 3 with some symptoms from stage 4. I have no experience of alternative therapies, but have not read or heard of any significant results. The best bet...
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    Benefits/support questions

    PIP is not means tested, so income, pensions, savings and assets don't come into it. They don't even ask any questions about finances.
  9. R

    Benefits/support questions

    Since your Step Dad is in his early 60s he will need to apply for reassessment for Personal Independence Payment, Attendence Allowance only applies from 65. From what you say he should get the higher rate for daily living. He may also get something for mobility if you can establish that he is...
  10. R

    PCA dementia

    I am so sorry to hear this. He must be terribly disoriented to act so out of character. The loss of understanding and control is very difficult to accept. Thinking of you both and hoping for the best. Rich
  11. R

    PCA dementia

    Hi Kat, I really feel for you and your husband having to cope with this as a result of an attack. Most PCA is caused by Alzheimer's and this results in a relatively predictable slow progression. It is far more difficult to understand how the PCA will develop when it has been caused by a trauma...
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    MMSE Results not representative of condition

    Young Dementia have prepared a leaflet targeted at GPs to help them make sound decisions about dementia. You can find it at https://www.youngdementiauk.org/gp-decision-making-tool It would be a good idea to ensure that all GPs have seen it. Mine has, but she was already pretty sensible and...
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    Fluctuation in capacity and cognition

    I'm no expert, but from what I have read, fluctuations and hallucinations are more typical with Lewy Body dementia. It is nice for professionals to help maintain a positive outlook for our loved ones, but in this case the nurse has done you no favours at all. It must be so hard when they feel...
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    Ideas for helping with stairs?

    Loss of spatial and visual capability are very common as Alzheimer's progresses. My wife has Posterior Cortical Atrophy and has these problems early on in her Alzheimer's progression. Marks on the edges of steps are very useful to her as without them she can't tell where the edges of the steps...
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    Struggling to get a diagnosis in concrete FTD

    Looks like it could be this http://www.gpnotebook.co.uk/simplepage.cfm?ID=x20050803153747160230
  16. R

    Seems I have PCA

    Hi Jeanie, you've summed up what my wife experiences and also her attitude to the condition. She was diagnosed 2 years ago and can still read any word you like and tell you what it means but can't read a line of text as she can't get her eyes to follow it. Money and finances are also a thing of...
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    PCA is most often a variant form of Alzheimer's that has more visual and spatial symptoms than typical Alzheimer's, in which memory and executive functions are the primary symptoms. In reality there is a spectrum of possibilities between the two. PCA is typically only diagnosed where there is a...
  18. R

    Audiobooks from the Listening Books charity - free subscriptions available

    Depending on where you live you may be able to access audio books from your library service either online or via the post. The service is available in Gloucestershire, but to be honest, the range of books is quite limited. You could try asking at your local library or searching on the internet...
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    I had genetic testing for FTD

    The course can be found here https://www.futurelearn.com/courses/faces-of-dementia#section-overview You can still join up for free. It's a good introduction to some of the rarer forms of dementia, such as PCA, which is the reason I did it some time ago. It covers some aspects of the familial...
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    Mum diagnosed with Alzheimer's at 56

    Welcome to Talking Point. Sorry you have needed to find this forum but there are many knowledgeable people here who can help with all manner of queries and information. If you are remote, it will certainly be the case that your father will have a far better understanding of what is happening...