Doctor's Who Don't Talk to the Alzheimer's Patient
I read the article from the Toledo paper on one of the nights I came home from visiting my husband in the hospital. He is 41 and suffers from AD. The week had been a complete NIGHTMARE which began, with the ER Dr. not wanting to concede that my husband did in fact have Alzheimer's (even though it took us 8 mos of testing, he was diagnosed 5 years ago) this ignorant Dr. ordered a cat scan of the brain "just to make sure there was nothing else going on".
I had to fight tooth and nail every step of the way for the correct treatment of my husband. I came home completely drained and then read this article. If this kind of program could be picked up across the country, what a blessing it would be! My husband is in the advanced stages of the disease, yet no one wanted to listen to me. He was admitted for severe dehydration and did not want to eat or drink. He was too weak to walk. Their immediate response was a feeding tube. I said, "No." Before he got sick, he was walking and eating normally and anyone with the basic understanding of Alzheimer's would know that when there is a SUDDEN change in a patient's demeanor, there is an underlying issue, NOT that "the disease is just progressing." After 6 days in the hospital, my husband left eating and walking and his Dr. actually said to me that next time he needs advice on Alzheimer's, he was going to call me.
In early diagnosis, I agree that many Dr.s tend to speak away from the patient because they may feel they will forget the information anyway. They must learn how to speak to the newly diagnosed patient. At the same time, once the disease progresses, the medical profession must learn how to listen to the family and/or caregiver. Since the patient cannot speak for themselves, they will be the best source of information. I fought a good fight last week and was thrilled to see a program going into affect that may take off across the U.S. to help those that cannot help themselves.
Beside my obvious concern for my husband, I was faced with the added burden of having to stand up for something that everyone else was ignoring. My husband was sick, the disease did not progress overnight. The more doctors, nurses, aides, etc., who understand this, the better we will all be.
Thank you for printing that article. It made me feel hopeful after a terribly draining week.
Karen Henley
Doctor's Who Don't Talk to the Alzheimer's Patient:
I read with interest your section on the topic of Doctor's Who Don't Talk to the Alzheimer's Patient, (Feb. 24, 2006, Alzheimer's Daily News). As a specialist in AD, I have worked with numerous physicians who rarely talk with the patient with AD, regardless of how early or mild the disease is, and in fact, I have observed doctors who don't even make eye contact with the patient. It is all too frequent that, in the mind of the treating physician, a diagnosis of AD seems to equal loss of personhood, rather than loss of memory and other cognitive functions. While formal courses for doctors in how to treat people as persons might be helpful, I would also suggest that the person who is not acknowledged speak up and voice their displeasure to their doctor, and, if no changes in their doctor's interactions result, the patient should feel free to see another health care practitioner who is capable of practicing humanistic medicine.
Rebecca M. Evans, MD, MS
Indiana University
Doctor's Who Don't Talk to the Alzheimer's Patient
I have wanted to address the issue of all hospital personal talking to people with dementia. I went so far as to put on the front of my mother's chart the words severe dementia and therapy people came in with directions. Then, I put a large sign on the wall behind her hospital bed ... same thing .... the doctors have no clue ... they wanted her to give them a number from I to 10 to tell them how much pain she felt ... is there no education for health care workers on this subject.
M. Acero
Doctor's Who Don't Talk to the Alzheimer's Patient
Bravo to Chuck Jackson for making a very strong case for telling a person with Alzheimer's - or other dementias for that matter - about his or her diagnosis. I would add that it is important for the family of this person to discuss the disease with the person as well.
I think that, in part anyway, doctors and even more so, families, are SCARED and thus, afraid to bring up the issue of Alzheimer's with someone who has been diagnosed with this disease. The family or the doctor will say that the person will be better off if he or she does not know about the diagnosis! Well - that is a crock!! Sure, there are very isolated instances where it might be best to remain mum but, for the most part, people with dementia NEED to know about the diagnosis.
When my mom was diagnosed with Alzheimer's Disease, my oldest sister, who has Healthcare Power of Attorney, told me emphatically that my mom must not be told about her diagnosis. My sister claimed that the doctor had said this. Well, about a year later, I was able to get a copy of the diagnosing neuologist's report and he said no such thing!
Moreover, immediately after my sister warned me in no uncertain terms that I must never tell my mom she had Alzheimer's, I started doing research on the internet and asked any specialist I found through my searches whether or not s/he advocated telling a person with Alzheimer's about the diagnosis --- and not one doctor to whom I asked this question said that the person with dementia should not know about the disease. I guess I was lucky in that I never contacted any of the doctors referred to in Chuck Jackson's letter!
I cannot stress enough the importance of both doctors AND families telling a person with Alzheimer's Disease or another dementia about the diagnosis. The person with the dementia is not an idiot and CAN handle the truth and deserves to KNOW the truth!
Carol Hillman
