Seventy percent of newly diagnosed Alzheimer's disease patients do not receive treatment within a year of diagnosis
Posted Jan 26 2010 12:00am
Decision Resources, one of the world’s leading research and advisory firms focusing on pharmaceutical and healthcare issues, finds that 70.7 percent of newly diagnosed Alzheimer’s disease patients do not receive treatment within a year of being diagnosed.....
By Bob DeMarco
I moved to Delray Beach, Florida more than six years ago to take care of my mother, Dorothy, who now suffers from Alzheimer's disease. I didn't know it at first, but my mother was suffering from mild cognitive impairment (MCI) when I arrived on the scene. MCI is often a precursor to Alzheimer's disease and dementia.
It is my belief that the early detection of the disease in my mother is the reason why we had a good outcome using Aricept, Namenda, and other medications. The introduction of an exercise program, an active social life, and healthy eating are major factors in slowing the progression of the disease. All of these above help control behavior problems that are also associated with Alzheimer's disease.
I wish I had the information in this article at the beginning of our trip down Alzheimer's land -- I didn't.
In the beginning, I decided to move into my mother's condominium and keep her in her own home. I did this because I concluded after reading some of the literature that moving her into a new environment would be too difficult and disconcerting for her. As a result, I ended up living in an over 55 community with a large fraction of the residence 75 years or older. When it comes to Alzheimer's and dementia I have received an eye opening education.
One by one I have watched friends and acquaintances of my mother fall into dementia. More often than not their children do little or nothing as the disease starts to progress. The children often watch the parent deteriorate until there is no alternative to full time care. I watched as one person had one automobile accident, then a second before their children concluded there was something wrong. I watched another go from mild dementia to full blown Alzheimer's almost overnight because nothing was being done by the family, or the personal care physician.
I suggested to them that they get some memory testing, and/or a neurological or geriatric consult. They didn't listen.
In the future I will start adding this, I hope you don't regret your decision not to move on this. (I'll say this to myself, I hope I am wrong and it doesn't get worse -- much worse -- then you could ever imagine).
It is only after you become a caregiver that you begin to understand the importance of early diagnosis. Believe it or not, as hard as caring for someone with Alzheimer's can be, it is likely to be much worse if you stick your head in the sand.
I doubt that many people understand that not only are they hurting the person suffering from dementia by failing to action -- they are hurting themselves.
I learned, over these years, that most personal care physicians do not understand Alzheimer's or dementia. Many of them "let it slide". Some doctors seem to think there is nothing to do until things get bad. They are lacking in education about dementia and Alzheimer's. Either they don't know of the importance of early intervention, or they don't care.
I know I don't like things the way they are right now, and I know we need education and solutions.
This might sound harsh, but the number of persons with Alzheimer's is increasing fast; this and only this is going to make the medical community get up to date. There is lots of money to be made.
In the beginning, observing the children's lack of action made me very angry. Over time, I came to understand how difficult this situation can be for children that are busy living their own lives. Like I was, they are unequipped to understand Alzheimer's and dementia when it strikes. As adults we are not well equipped to become the parents of the parent. I never had that course in college. The children of baby boomers are going to get one heck of an education. The smart one's should start now -- get ahead of the curve.
I now believe the single biggest reason Alzheimer's sufferers fail to get diagnosed early and get treatment is denial on the part of the children and the personal care doctor.
I know when the diagnosis comes, family and friends of the sufferer often can't believe it, and often refuse to believe the diagnosis. I have discussed this with many caregivers and many agree. It happened in our case--with family and friends. They just can't comprhend or accept Alzheimer's disease. This is now understandable to me. Alzheimer's is hard to understand and comprehend when you sit in the front row.
Alzheimer's and dementia are hard to comprehend. I use the word comprehend with purpose. I recognized the situation with my mother, but it took me more than one full year to deal with the problem effectively. Keep in mind, this was all I was doing day and night--learning and assessing the alternatives. At that time, there wasn't much good information available. Fortunately, this has changed.
I learned on the job. Full time. I am now convinced that if I had not acted in the way I did, when I did, that something horrible would have happened. I base this on the fact that I have seen the horrible that comes with inaction and denial.
I now have a better understanding of why seventy percent of Alzheimer's patients do not get diagnosed early. Many sufferers don't get diagnosed properly until they need full time care. Until they "can't do it anymore", or until something near devastiting happens. Automobile accident, lost and wandering, or a precipitous drop in health usually serves as a wake up call. But, not always.
If you are related to someone over 75, you really need to start getting educated now. If you know someone approaching 85, I suggest you start reading the now.
Please know and try to understand this---nearly one out of every two persons over the age of 85 suffers from Alzheimer's or dementia.
I bet if I told you that you were going to die if you didn't lose 50 pounds you would do something about it. I bet if I told you were going to live to be 95 years old, you still wouldn't do anything to try and prevent Alzheimer's.
Consider this. When your brain starts dying you will lose the ability to do all these things: brush your teeth, take a shower, put your cloths on, take a poop, and eventually you won't be able to swallow. While this is happening your heart will still be working. You will still be breathing. Brain death is ugly.
My mother is 93 and she is still going. We were lucky we got her treated early on. Nevertheless, all the things I described above are happening.
What to do? I'll let you decide. If you want my opinion just ask.
Decision Resources, one of the world’s leading research and advisory firms focusing on pharmaceutical and healthcare issues, finds that 70.7 percent of newly diagnosed Alzheimer’s disease patients do not receive treatment within a year of being diagnosed.
The reasons for this are due to their denial, preference for no drug therapy, concerns about cost, or the side-effect and safety risks associated with drug treatment.
The report entitled Treatment Algorithms in Alzheimer’s Disease finds that surveyed neurologists primarily attribute their decision not to prescribe treatment for newly diagnosed Alzheimer’s disease patients to patient prerogatives.
Surveyed primary care physicians (PCPs) also cite presence of mild disease as a factor to delay drug treatment.