Thanks for everyone who has replied,
I know that the type of early onset familial frontotemporal dementia my dad has, can be assessed with a genetic test. If I carry the gene, there is a 100% chance I will develop symptoms and if I don't carry the gene then I won't have inherited the faulty gene nor will I be passing it on to my children.
@welshpack - I understand your situation, I think you are most in common with me - I am sorry to hear abuot your family situation, however it is always reassuring to hear that I am not the only one worrying about it - although I have great friends, people who have lived it can only really understand.
Do you know which type of FTD your mother had?
There is a process of talking with children about hereditary diseases and thankfully I have met some people through the 'rare dementia support group' at UCL who can offer support, ideas and experience of talking with children. I believe it is a gradual and has to be age appropriate approach - not putting a date on when you will "tell them" as they may find it difficult to trust you afterwards if they feel you have been "hiding things from them". I know I have felt my mum hasn't always been open with me, throughout my life and I am determined not to be like that with my children!
Are you going to be referred for Genetic counselling soon? or has the process started, I think it can take quite a long time.
Also, being involved with GENFI (genetic frontotemporal dementia initiative) at UCL (dementia research centre) gives me a lot of hope for them to develop preventative drugs and hoepfully one day a cure, you can be involved with that if you have a familial ftd in your family (whether you have the gene or not). This also helps me feel I am helping society find a cure for this horrible disease.
@Kevinl - I understand your point about the sword of dementiaclese, as you can see above, my family have a specific type of familial dementia - not just AZ, but in my head, I would prefer to know so I can make plans either way - before I become ill and have to have the added stress of dealing with power of attorneys, end of life plans etc.
I think eating healthy and exercising is always a good way to continue being healthy - giving your body the best opportunity! I am quite a positive person and won't let it ruin my life, in fact, probably the opposite, it will give me a kick to achieve and plan things which perhaps I wouldn't do if I was just plodding along in life.
Thanks for sharing your story cobden28, glad to hear you have not got a gene for familial AD.
Look forward to hearing more stories and journeys! Thank you x