And some of us more than once..I have lost my mom to this disease, her brother, and another aunt by marriage. In addition my mom had a brother and sister we think also had this disease but it was not a major topic when they died. The clue is behaviour..once easy going personalities, they became grouchy and made bad bad decisions. The uncle made decisions such that the family farm was lost. My DH sister is has AD and so does he..I hope there is no more of this at my door step.
I think that the folks who are not touched by this disease or those who are at a distance and don't see what is going on on a frequent or day to day basis are in denial about it and think it can'ttouch them. They also are unaware of all the different ways it can present..even those up close to it miss the signs.
Also, I think I read somewhere that it has only been 10 years or so since the doctors have even been able to diagnose it. It use to be the only way to do that was to have a autopsy. Ten years really isn't very long. So if the dr. doesn't know much about it yet then the general public probably doesn't either. We do because we live with it every day and we have educated ourselves on it. Like with any other kind of knowledge it takes effort and interest in order to learn about it.
Since I have been involved in Alzheimer's Disease, I can absolutely believe those statistics. Whenever I mention that my husband has AD, I have estimated on my own that at least 75% of those I tell, say to me, "Oh, my "fill-in-theblank" had AD.
Of people I know, there is my husband, his aunt, my aunt, my message board monitor's mother, my sister's father-in-law, and at least 3 of his brothers.
On the question of ignorance mentioned above, there is a huge difference in knowing someone with the disease and actually taking care of them. I do believe the 77 percent of Americans know someone who had/has it, but I wonder what the percentage is of people who have actually done hands-on caregiving (haven't read the article yet).
BTW--the article apparently is about a poll by a new Political Action Committee (PAC) formed to lobby Congress to pass Alzheimer's legislation. I don't know much about the background--I received an email inviting me to their kickoff reception last week--couldn't go. But it sounds legit--people like Sandra Day O'Connor (former Supreme Court Justice) are involved. So it has to be a good thing for the AD community.
Guilty as charged! I had NO idea what caregivers went through before my own experience. I have noticed that sometimes people don't ask how we are doing & maybe that is because in the past I have opened up too much. So now if someone asks, depending on who it is, I tell them what I think they need to know.
I think the key is they know someone who has it. The question is: have they spent real time around that person to know what AD is really like? I do not think so. We were not around my FIL much due to us on the west coast -= him on the east coast. I know it exhausted and killed my MIL taking care of him but I am only now getting to know what day to day is like. My mom had dementia and early on I had her for 2 weeks to give my sister a break, but she had other medical problems that basically kept her in the chair bound except to get up to go to the bathroom. I could have never gotten her up off the floor - it was hard enough to get her out of the chair into the wheel chair - so I know I won't be able to with hb.
My whole family saw some kind of dementia take my Grandfather, but I was in college and saw only bits a pieces when he visited for a couple weeks every 6 weeks or so--to give my Aunt and Uncle a break. Even after my Dad passed away, my Mom continued those visits, until such time when they had to place him. Aunt and Uncle still worked and it was no longer safe to leave him alone and none of his other kids (had 7 children) could/would do anymore than they had been. Mom couldn't take on more as a widow with 4 kids still at home. Even with that bit of exposure, it appalls me now to look back at my DH's testing and what I was and WAS NOT told by the professionals. They told me the DX. Even asked me for his Stroke Hiostory--who knew he'd had one, let alone 2. I learned the most researching on the internet. I do not recall anyone saying, "This is terminal." No one said anything to indicate the coming declines. At the care plan meeting to arrange for discharge, after changing the 1st of the 2 meds he could no longer take, the only proposal presented was placement. I'd already been caregiving him because of the Mental Illness for 18 years, and told them I couldn't continue alone, but if I could have help, I believed the best place for him was at home. Looking back now, their assessment would probably have been more persuasive had they leveled with me on the probably way this would go. But, they agreed to my wishes and we've had 4 more years at home so far. It is very frustrating though, the number of professionals who aren't or don't feel comfortable laying out the basic facts. Certain basic symptoms are generally part of the decline. Driving must be stopped. Meds can help but nothing will fix this. Even they don't seem to get--they are not responsible--the bad guy--it's the Dementia. 77% of Americans may have had a brush with AD, but most of them still have no clue what it is and what it means, a nd until that awareness happens we'll continue to deal with the frustrations such unawareness creates.
Carosi, I did not know that this was "terminal" until I did my research online. We had seen two doctors and no one said a thing about how this would end. I do not even know if my DH knows he is terminal. I will not tell him, what good would it do. So many people I talk with are shocked at the fact that DH is terminal. 77%, bet out of that number 60% have no idea what is going on with the main caregiver. Or how it will end.
My husband's doctors have never used the word "terminal" but they did tell me that death occurred on an average of 3-8 years after diagnosis. To me that meant terminal.