Another year. Another Alzheimer's Awareness Month. Has anything changed? Does the public really care? Should we do anything about it? These are some of the questions addressed in my new blog. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. Please post comments here. Thank you.
I have written about AD myths in my monthly column before but will post your points again in an upcoming column. I started this AD journey in 1993, all but completely unaware of what it really was--but I learned, boy did I learn. And, you are right, nothing much as changed in the past 20 years-- still no prevention, no cure, no stopping it's progress and it is fatal. I know there are books that fly off the shelf about how to avoid it, all sorts of research about more sleep, education, supplements, foods, new drug trials, yada, yada, yada. Gar-bage, gar-bage. How many know that the youngest person diagnosed with AD--that I know of personally, is 29!
Sometimes I get feedback that someone has been helped by me--just by understanding that AD is a DISEASE of the BRAIN, not just being forgetful. That helps me in my self-imposed mission to keep 'educating' the public as best I can. Last week someone told me about her aunt who saw a doctor who said 'early AD.' I told her when her doctor asked a family member all sorts of questions, he was a good doctor, getting behavior facts from someone who knew what was happening, did not dismiss their concerns, etc, and she felt better. The thing is, Joan, and all of us who are self-appointed AD advocates, we do make a difference, one person at a time and it can be discouraging and anger producing, it is such a slooooww process, and there are so many other competing medical problems, all with advocates and demanding more, more, more--all with their own Month and money drives. But dementia is in a separate category, so hard to understand for most people, and I don't think the public, at large, has made any collective effort to face it. It's so hidden for the most part.
Please, Joan, just keep doing what you are doing, don't get discouraged. It really has a positive effect in ways you may never even know. Who else if not those of us who have been there? Betty
Joan, No one cares except the family member caregivers. Since the disease was diagnosed and given the name Alzheimer's (Old Timers disease) over 100 years ago no progress for a cause or cure has resulted from research. I, like you am tired of all the junk put forth about what "May" cause it. No one knows. I think I will scream if one more drug from Big Pharma comes to market with the label stating it "MAY" help. Doctors have no more concern for an ALZ family member than they do for the people in facilities with advanced diabetic conditions such as gangrene or a patient with a serious heart condition. In my opinion their thinking is that they are all fatal and ALZ is no different. No one but us caregivers know how ALZ is different because of total regression and and constant 24/7 emotional and mental strain on us in watching our love one slowly fade back to being a helpless toddler. I will do my part in being kind to all ALZ patients at my DH's NH. I am just too mentally depleted now to try to get anyone that hasn't lived it to understand. I really appreciate all that you do to spread awareness to the medical field. Thanks, you are an amazing lady with a mission. Maybe someday all of your hard work will pay off.
Once again, thank you, Joan!! I often wonder if the public at large is afraid just plain scared to death that they might be the next one or a family member might and just don't want to even think about dementia or Alz. When I tell people that Frank died from dementia I get the same blank look and some even say how does that cause death. I didn't know much either even though there was dementia in his family so obvious but it was never ever mentioned as such. They were just "odd" or had problems. We can only hope for education to improve. Having celebs lend their voice and money can help bring awareness, can't hurt.
Speaking of awareness, I was watching Anderson Cooper on CNN a few weeks ago when he was talking about Donald Sterling, the owner of the L.A. basketball team, who mad racist statements.
This was about the time that someone had suggested that Sterling might have dementia. Well, Mr. Sterling had apparently criticized Magic Johnson and speculated about how he had acquired the HIV virus. But Mr. Sterling incorrectly said that Magic Johnson had AIDS (not HIV). So Anderson Cooper criticized Mr. Sterling for not knowing the difference between HIV and AIDS, but then Mr. Cooper said that since Mr. Sterling might have “early onset dementia,” it might account for the racist statements. (Mr. Sterling is in his 80s, so I don’t think he has “early onset dementia.” )
I’m pointing this out not to criticize Donald Sterling (although he seems seriously creepy) or Anderson Cooper (whom I like) but to show that a lot of terms are used incorrectly in describing different illnesses.
A friend of mine "S" and I have been having a discussion about a mutual friend "C" whom we suspect may be showing early signs of Alzheimer's Disease. "S" keeps referring to memory issues, and I keep bringing up problems of reasoning and logic that I have noticed recently in "C's" behavior.
I just emailed a printable copy of the points (including the copyright statement and acknowledgement) to "S", in an effort to correct her misconception that Alzheimer's Disease is just a memory issue. I have known "S" for twenty years, and she is an intelligent, well educated woman, but I have sensed for some time from previous conversations that we have had that she doesn't "get it". She thinks that Alzheimers is simply a memory issue. In the email I included the nitty gritty of my DH's behaviors, in all their unpleasantness to strengthen the message and put it on a personal level to help her understand.
I hope that this will help to educate her, and perhaps she can pass the information on to others.
bqd, You have hit on a pet peeve of mine – the common misunderstanding that dementia is primarily a memory issue.
However, people who do understand this group of diseases often unintentionally contribute to the public’s confusion. For example, the care industry’s use of the term “memory care” misleads people into thinking Alzheimer’s disease is a memory problem. Those of us who live with this and related diseases know that “memory care” is just a euphemism for a dementia unit, but outsiders do not.
Also, memory loss is often more obvious than other deficits and even the Alzheimer’s Assn’s first “warning sign” – “Memory loss that disrupts daily life” – calls attention to it.
Most people have little interest in looking beneath the obvious, especially when considering an unpleasant subject. Unless people who do understand this group of illnesses describe it in plainer and more accurate terms, I don’t think general public is going to be educated.
Recently I had to complete one of those sets of forms you fill out for a visit to a new doctor. They have practically every illness known to man on a checklist, usually grouped under what system of the body is involved. I noticed that they included "memory problems" . No other symptom of dementia was mentioned, and the disease was not mentioned by name. And the memory issues were listed under "psychiatric"! Obviously this doctor didn't know any more than the average man on the street about what dementia involves. Was he on vacation when they covered this in medical school? We have also run into several doctors who seem surprised when we mention dementia being a fatal disease. How is it possible that doctors don't know that?
By and large, most doctors do not study 'dementia,' unless they specialize in such subjects. For years I have said that anyone in the medical field should take a course in dementia because they are going to run into it, if it's a dentist, surgeon or podiatrist, somewhere along the way they will see it and most, sad to say, will not recognize what it is unless they have had personal experience with it. Try taking your loved one with dementia to a dentist and see how much fun that is! It should be required, but I don't know that it is.
"S" came back with a reply today with some additional questions about dementia and Alzheimer's Disease, which I was more than happy to answer. I think she is finally beginning to understand what being a care giver is all about as well, and what a struggle it is for me to watch my DH's abilities slowly fade away, to be replaced by bizarre behavior which cause additional stress. This is something that we are all familiar with, but outsiders just don't get.
I share your pet peeve Myrtle. And I guess I was just in the proper frame of mind to try to educate my friend, instead of ignoring the remark about memory, as I would have in the past. Its either educate, or give up on the friendships of people who are ignorant of what the disease really is, and how it affects not only the sufferer but their care givers!