Hi Dylan,
My Dad appears to have a dementia that is very similar to FTD or possibly is FTD but as there are no other family members who have been similarly affected, always we are told that in his case it is unlikely that his dementia is hereditary.
Nevertheless, I have thought often and hard about the possibility that what he has might be passed down to myself or my brother and sister, and if I could just walk into a doctor's office and get tested for it I would. Because for me, I'd rather know. My only qualm when I have investigated if genetic testing could be done for myself if whether it could have a negative implications if legally I had to divulge my results to say an employer or insurance companies. What would happen at my work if I started making mistakes, or behaving oddly? Would I be discriminated against?
When Dad was first diagnosed 10 years ago and for the first 7-8 years of his disease the prospect of possibly inheriting the same fate was rather a scarey thought. But now, now that we are used to what would otherwise horrify ordinary folk, I have come to a feeling that whatever way I am to die is not going to be fun and at least if I knew that it was dementia that was going to get me, and was likely to get me in my 50s then I'd really make sure I was kicking my heels up now, I'd put as little of my money as possible into superannuation (the enforced future pension payments Australians have to pay from their salaries) and I would travel the world and not worry about ensuring I had enough money to live on when I am retired! Basically I would be fiscally irresponsible and not give a hoot about life after 60.
Now some might say that that is crazy talk and that I should save money for the future care I would need, but in Dad's case all that resulted in was that he and mum had to pay for everything whilst others were looked after by the social system, so I can't really see the incentives for being responsible.
You however having children of course would have a whole other kettle of fish to consider. But at least knowing you were likely to get the disease may allow you to more effectively financially plan ahead.
I understand the fears others have, and it is most definitely an individual choice. But for some strange reason, now that I am no longer horrified by the disease and understand it well, I can no longer see it as anything but one type of terminal illness that I could die of. If I knew that dementia was the disease most likely to end my life then I would have greater motivation to work on trying to maintain my brain for as long as I could, I would be more motivated to plan my future years accordingly, and I would be prepared to march into a doctors office or make sure my partner was ready to march me into a doctors office as soon as it became apparent onset had arrived so that I could get access to drugs that would slow the progression right from the get go (so that I could continue enjoying life for as long as possible).
That's just how I feel because dementia no longer scares me. Its the not knowing that freaks my personality type out.
I hope that a different perspective helps you think about things for yourself.
Best wishes,
