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Support with Familial Alzheimer's disease

Discussion in 'Younger people with dementia and their carers' started by BungleGirl, Mar 25, 2012.

  1. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    #1 BungleGirl, Mar 25, 2012
    Last edited: Mar 28, 2012
    Thank you to KatherineW for making this post a 'sticky' :)

    If you have found this thread because you or a loved one is affected by Familial Alzheimer's Disease, I do hope that you will find it useful. There's not many of us but I hope that if you are here, you now know that you are not alone.

    Over the weekend I will try to bring together some links to information that may be helpfull (please post any suggestions on the thread and I can move them onto this first post).

    If you are new, do jump in and post on here, if you don't feel comfortable posting just yet, feel free to send me a personal message (click on my name on the left and click on 'personal message').

    None of us are experts, but I hope that with this thread we can support each other and share information with each other.

    The rest of the forums on here are fabulous so do make sure that you have a look around and post wherever you feel is most appropriate, a lot of the issues that come with having a form of dementia or caring for someone with dementia, apply no matter what age it strikes so all of the other forums are really helpful too.

    Below is my original post about having a specific thread about Familial Alzheimer's Disease:-


    I really enjoyed attending the Familial Alzheimer's Disease support group meeting in London yesterday and it was lovely to meet others dealing with not only the affects of having a loved one with Early Onset AD but the Familial aspect.

    One of the things talked about was the fact that there must be people who are affected by FAD that don't know about the support group, the reaserch and trials etc.

    We are a minority in as much as that FAD accounts for less than 1% of the total sufferers of AD. Having just spent ages going through threads on here it seems that there are a few members dealing with FAD but as I know from my own experience sometimes people go weeks/months without visiting this site, I thought it might be helpful to have a 'sticky' at the top so that people could immediately find info about FAD and find other members who have experience of FAD. It would also make it easier to share information about things that we can do to raise awareness, campaign etc.

    Might this be possible? The younger people area is brilliant for anyone affected by Early Onset AD and the main forum is also brilliant but the Familial aspect of FAD brings with it a whole bunch of other issues and it would be nice to have a place that people could find easily either to post themselves or just to read others experiences and find out what support is available.
     
  2. cobden28

    cobden28 Registered User

    Jan 31, 2012
    451
    Yes please!

    I had a blood test in November last year to see whether I have the gene for a hereditary form of stroke, as I have had a series of TIA's/stroke related 'episodes' over the past six years and I have a fear of developing Alhzeimers or any form of dementia. My late, lovely mother-in-law had vascular dementia which I understand to be caused by a series of TIA's which I know she had, but we weren't aware of the importance of this at the time (we just weren't told).

    I was told the blood test takes a very long time for the results to come through and I still haven't heard, is this necessarily a bad sign or does this sort of thing normally take months to come through?
     
  3. Harriet66

    Harriet66 Registered User

    Mar 23, 2011
    91
    Hi Cobden,

    My husband had the CADASIL blood and tissue tests done last year. The results took 4 months to come back which is par for the course. It does depend a little on the hospital you attend, but some of the tests have to be done abroad! Whether this is a lack of facilities in this country or if it is just cheaper, I'm not sure. I was able to check on the waiting time by visiting the neurology section of the hospital website my husband attended. Hope this helps and best of luck.
    Harriet

     
  4. sophia_cheng

    sophia_cheng Registered User

    Mar 26, 2012
    1
    I attended the FAD event on Saturday too

    I also attended Saturday's event and am very keen to raise awareness of this issue. I will let my extended family members know of this forum as I believe they would benefit from this kind of forum.

    Many thanks,

    Sophia
     
  5. wjoanne918

    wjoanne918 Registered User

    Feb 25, 2012
    47
    South Wales, UK
    Yes please!!!!
    Thanks Bungle Girl for raising this, I'm glad the confrence went well and you decided to go.

    The Dementia research centre in London do amazing work and it would be great if we could get together and share our experiences on FAD.

    Jo
     
  6. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    Sophia, good to see you on here! Were you the lady with the long dark hair with experience of using social media? I was on the back row nearest to the side door, I was with my very tall husband and my cousins (one of whom had her baby with her).

    Jo, it was a really good meeting and I'm so pleased that I went. I actually left feeling really empowered, like something good can come out of this hideous disease affecting my family. There were so many amazing people there and I'm sure that we can make a difference by either raising awareness that AD can strike at an early age, that it can be familial or by participating in the research or simply supporting each other. I'll send you a PM about updates on the DIAN research - I don't want to post it on here as I heard so much that it's all a bit jumbled and I don't want to post any incorrect information on here. I think that they will be sending out a newsletter covering what was discussed on the day.

    It would be so nice if we can welcome some others affected by FAD on here, if we can get this as a 'sticky' or a sub-forum hopefully anyone serching will find us straight away - it can be such a lonely place without having other people to talk to.
     
  7. KatherineW

    KatherineW Volunteer Moderator

    Oct 2, 2007
    12,661
    London
    Hi Bunglegirl, and everyone who has posted here,

    I've stuck this thread for you as requested. :) It might be an idea to change the title of it now it's stuck - what do you think?

    We may want to highlight more threads in this forum at a later date, which might mean this thread would need to be combined with others to make one 'super sticky' (like this one). I will of course let you know in advance if we feel it's appropriate to do this.

    Hope this is helpful,
     
  8. wjoanne918

    wjoanne918 Registered User

    Feb 25, 2012
    47
    South Wales, UK
    Well done bungle girl and thank you. Just to let you know I haven't received an inbox from you. Jo xx
     
  9. supernurse

    supernurse Registered User

    Apr 11, 2012
    2
    Gillingham, Kent
    FAD meeting

    My husband and I also went to the annual meeting of Fad and found it of interest again paticularly the exciting news with drugs trials. His sisters also found it of great interest. I know that early onset Alzheimers is a minority but this is set to change as more people are diagnosed. Lets hope we can change peoples concept of this awful disease

    Supernurse
     
  10. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    I'm glad that you found us on here supernurse...it was a really good meeting, wasn't it? I left feeling so much more hopeful about the future! x
     
  11. hashkey

    hashkey Registered User

    Apr 16, 2012
    4
    Hi
    I am new to the forum but what I have seen so far is great.Sorry if this is a silly question but I really don't know although I am hearing the phrase a lot recently.
    Could I ask if someone could give a bit of extra info about FAD - Is it .... if a person can identify relatives (parents or grandparents) who have suffered from dementia is this the basis of FAD?
    thank you in advance
     
  12. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    Hi hashkey,

    FAD is when Alzheimer's Disease is due to a mutation of a gene that can be passed on to future generations in an 'autosomal dominant' fashion which means that if one parent has the gene mutation then any children have a 50/50 chance of getting FAD, if they inherit that particular gene from the other parent (that doesn't have the mutation) then they are free from FAD (which is what we all hope for!).

    FAD is mostly associated with early-onset which is anyone under 65 but from the few people that I have met with links to FAD it often rears it's ugly head in peoples 40's and sometimes even 30's.

    There are many people that have early onset Alzheimer's Disease which is not due to FAD so having a parent with early onset Alzheimer's Disease does not mean that it is FAD, there is usually a strong family link. In my family my mum, auntie and their father all had it. As there are known gene mutations, blood tests can be done to see if the sufferer has a gene mutation linked to FAD.

    It is possible to have predictive testing to see if you have the gene mutation (I assume this is only available if there is a family history of FAD) which is something that I personally do not want to do and 6 months of genetic testing is required before this can happen in order to be sure that you are sure of the decision and the consequences of finding out results of the test, whatever the result.

    There is a FAD research program at the Dementia Research Clinic at University College London and they are also linked to an international research program (includes USA & Australia too, I think). This gives me great hope as they are looking into the possibilty of treating people 'at risk' (with a parent with FAD) before symptoms arise, which might in the future mean that tteatment could start up to 10 years before symptoms would arise and hopefully slow the progress. This is all just research at the moment but I think that anyone affected by FAD (including me!) will be delighted to have a little hope!

    That is all just my understanding of everything, there are some factsheets which may explain things more clearly than me:-

    http://www.alzheimers.org.uk/factsheet/405

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=102

    I don't want to frighten everyone that has a parent who has/had Early Onset Alzheimer's Disease, Familial Alzheimer's Disease is very, very rare but if there is a strong family history it is worth finding out more if/when you feel up to it.

    It's all a bit overwhelming, it's taken me over ten years from finding out about the link to FAD to really doing anything about it and facing up to it.

    I should point out that there are other places in the UK that are doing research into FAD but the London one is the only one that I really know anything about.
     
  13. hashkey

    hashkey Registered User

    Apr 16, 2012
    4
    Many thanks for the explanation and clarification, it is very helpful.

    I have very little information to go on in relation to my own situation other than one of my parents and one of their parents had Alzheimers by the time they were 60.

    I can see why serious consideration of whether to have such a test is encouraged and can just about imagine how difficult the decision as to whether to must be to make.

    The links you have included are very helpful.

    thank you again.
     
  14. supernurse

    supernurse Registered User

    Apr 11, 2012
    2
    Gillingham, Kent
    Fad

    I am having a bad day today as my husband said his life was not going in the right dirrection and wanted a divorce, is it common for sufferers who have other health issues to say things that they regret later and how does their spouse or partner copes with that. Advice needed for a distressed carer of a FAD Sufferer

    supernurse
     
  15. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    Oh Supernurse, that must be terrible...no wonder you are feeling down and upset.

    I have no experience of this myself, Mum had FAD and she didn't have a partner so I didn't see how FAD affected a relationship.

    How much is your husband affected by Alzheimer's at the moment? Do you think that there is a possibilty that he is saying this to protect you from how life will change as the disease progresses?

    It may be worth starting a new thread either within the Younger People forum or on the main Support for Carers forum as there may be others that have experienced this and you may get more advice there as more people read that forum.

    I really do feel for you...I'm sending you virtual hugs...

    Just another thought - has he been pulling away from other members of your family or friends? Maybe he is worried about being a burden on people that he loves :(

    BG x
     
  16. josoap80

    josoap80 Registered User

    Sep 2, 2012
    1
    Hi there,

    This is kind of difficult so please bear with me. We have familial alzheimers in my mothers side. It was all confirmed and the like while she was alive. She died 10 years ago and we have all pretty much ignored the implications, just getting on with life and not worrying about the future. Problem is that afew weeks ago my sister turned the age at which Mum became ill.....and to be honest, I am struggling. I have no one to talk to about it as my mums family have all but deserted us. I cant talk to my sister about it because I know that she is terrified and if she knows what's going on in my head, it will make it even harder for her. All my friends turned tail and bolted a long time ago and my partner doesn't need to hear the things that are going through my head!! I was hoping that there may be someone around that can understand some of how I feel and maybe lend a friendly ear?? Or at least point me in the direction of someone that can? Thanks
     
  17. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    Hi and sorry for not replying before now. I really can understand how you're feeling. It is bad enough thinking that it could happen to us, but to think that it could happen to our siblings/cousins etc. is just horrible. How is your sister?

    Personally, I freak out a little bit whenever I lose something (often as I'm not an organised person!) or get back from Tesco and realise that I forgot to get something that I needed. I think that we become hyper-aware of these kinds of things and no doubt notice them in others that might be at risk. Mostly these things are normal and I used to lose things and forget things when I was in my twenties!

    If you want to send me a private message, please do. I'm happy to give you my phone number if you want to talk.

    I would really recommend seeing a counsellor as it is good to be able to talk about your feelings with a neutral person. I know that my husband finds it very difficult when I talk about Alzheimer's and I can understand that, it is difficult for him as he doesn't want to think of it happening to me. I saw a great counsellor and it really helped me.
     
  18. aldavison

    aldavison Registered User

    Dec 1, 2012
    2
    fad

    Hi. My husband has F.A.D.He is 53 now and is in hospital.His mother and sister were both 47 when they died and also his uncle and two cousins.I was very interested in the thread as it is rare to read about other families condition.It has been a very difficcult few years for everyone.My husband had an awful time at work and then became very hostile towards the children.He had to leave the family home and go into a care home and a few months later was taken in handcuffs to hospital,he is now on a ward for dementia sufferers with challenging behaviours.I still hope he can come back home.I hate to think of my three children contracting this awful disease.I am at present awaiting for blood tests to provide a genetic marker in the hope that it will be helpful to the children.I dont know of any support groups or any research going on.I would appreciate any information.There is an article in Novembers dementia monthly about the handcuffing incident.
     
  19. BungleGirl

    BungleGirl Registered User

    Sep 23, 2009
    74
    Lowestoft, Suffolk
    Hi there! Thanks for posting and sharing your story. I'm really sorry that you too have been affected by FAD and I truly do understand the worry that you have about your children having the possibility of inheriting the gene...if I think about the possibility of my daughter getting it if I am unlucky enough to inherit the dodgy gene, it takes all of my strength not to have a full on panic attack!

    There is a support group but it only meets once a year and the next meeting is on Saturday 9th February. I'll me going to it with some other members of my family and a friend that I met through this forum is also going with some of her family.

    I'm in a hotel at the moment as I'm on a training course, so I'm just going to charge my phone for a while and then I'll reply with some further information.

    If you would like me to forward the FAD support group email to you, just send me your email address in a private message - I can't see the whole screen on my phone but I think if you click on my name it should give you the option to send me a private message.

    Well done for posting on here, I know that it's not an easy thing to do but I have benefited so much from speaking with other people affected by FAD - it is so good to know that you are not alone and that there are other people who understand how you feel.

    Sophie x
     
  20. aldavison

    aldavison Registered User

    Dec 1, 2012
    2
    fad

    Thanks for getting back so quickly.Il send you my e mail address on Sunday.Its a shame support group in London as i live in Northumberland but Im sure i could get there.Thanks again.
     

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