Support with Familial Alzheimer's disease

[BungleGirl]

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.

[cobden28]

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?

[Harriet66]

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

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?

[sophia_cheng]

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

[wjoanne918]

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

[BungleGirl]

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.

[KatherineW]

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,

[wjoanne918]

Well done bungle girl and thank you. Just to let you know I haven't received an inbox from you. Jo xx

[supernurse]

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

[BungleGirl]

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

[hashkey]

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

[BungleGirl]

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/sc...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.

[hashkey]

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.

[supernurse]

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

[BungleGirl]

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