Sample Book Pages

(When The Doctor Says, "Alzheimer's"

LEARN ABOUT ALZHEIMER'S CAREGIVING

* Top of Page * Diagnosis * Dementia * Second Opinions * To Tell or Not To Tell *

DIAGNOSIS

* Top of Page * Diagnosis * Dementia * Second Opinions * To Tell or Not To Tell *

It is generally accepted that the only sure way to get a true diagnosis of Alzheimer's is with a biopsy of brain tissue usually done at autopsy. But according to an article in the Health Section of the November 12, 2001 Los Angeles Times, PET scans are now sensitive enough to indicate the earliest signs of Alzheimer's, giving doctors the opportunity to begin earlier treatment and, hopefully, delay the progress of the disease. It has a 95% detection rate, but currently costs $1,500. It is not covered by insurance or Medicare, and will probably continue to be used in limited circumstances for the time being.

Other possible tests keep coming on-line and will likely continue to do so for some time, but none is yet in common usage. Whether or not to have an early test diagnosis for yourself or a loved one is problematic and certainly a very personal decision.

While not routine, diagnosis can be done by taking sample tissue during brain surgery or tissue extracted by needle.

Until and unless the new PET scans become cheaper and more plentiful, the diagnosis will probably continue to be made by trying to eliminate any other condition that may be causing the symptoms, with a diagnosis of 'Probable' Alzheimer's being correct about 85% of the time.

Occasional memory loss, distractions, dumb decisions are not automatically signs of Alzheimer's--far from it--everyone does those things. But you should consider taking your loved one to a doctor to determine if it is more than just normal forgetfulness if:

His memory loss is affecting his work. Colleagues or customers may be among the first to notice subtle changes.

He gets confused doing familiar things and frequently forgets what he recently did and repeats what he just said.

Others have difficulty understanding him. On occasion we all misspeak, but he may be using too many close, but inappropriate words too often, saying 'bus' for 'car', 'dress' for 'jacket', 'telephone' for 'radio'.

He is frequently confused about the day, time and season. He's not always sure where he is or why he's there.

He doesn't know how he got someplace and is sometimes lost in familiar places.

He is making inappropriate decisions about everyday events; he may put on inappropriate clothes

He is unable to make pocket change, balance a checkbook or work with numbers he always understood before.

He puts things in inappropriate places and loses them more than usual.

His personality changes dramatically. He may become suspicious, fearful and confused more than normal.

He has lost interest in doing the things he normally does. He may need to be encouraged to do things he always enjoyed before but still resists participation.

Taking your loved one to a doctor can be difficult if he is resistant. You might have to make up a story about why you are taking him. Tell him the doctor called and wants to see him about an old injury, an insurance exam, whatever you think will work.

Ask him to go with you for your own appointment with the doctor, tell him you're scared and need his support and comfort. You can also suggest he go to the doctor to put your mind at ease, to be reassured that there's really nothing wrong with him. Depending on his stage of the illness, promise him ice cream or another special treat after the visit.

It is likely that most Alzheimer's patients know 'something' is wrong but will stay in denial as long as possible--and why not? Make a private phone call to the doctor beforehand and tell him why you are bringing in your loved one. For the visit, have a written list of all current medications, dosages, vitamins, supplements and other health issues the doctor may not know about.

Also, using the symptoms found in the "Stages of Alzheimer's", include those that are applicable. Hand these lists to the doctor so that you need not discuss such details openly in front of your loved one if you think it will be upsetting.

National Library of Medicine
text.nlm.nih.gov

International Psychogeriatric Association
5215 Old Orchard Rd., Suite 340
Skokie IL 60077
847-663-0574
www.ipa-online.net

Geriatric Consultant Resources
2001 Commonwealth Blvd., Suite 205
Ann Arbor MI 48105
734-663-9281
www.gcrweb.com/alzheimersDSS

Alzheimer's Association
www.alz.org

DEMENTIA

* Top of Page * Diagnosis * Dementia * Second Opinions * To Tell or Not To Tell *

Dementia is a symptom, not a disease in itself, the same way fever is a symptom of a variety of medical conditions, but not a disease in itself. Everyone with Alzheimer's has dementia, but not everyone with dementia has Alzheimer's. People with dementia lose their intellect and personality traits, they are unable to function normally on all levels of life. Dementia can come from dozens of conditions such as a blow to the head, being an alcoholic, allergies, reactions to meds, depression, many diseases--but Alzheimer's is the major cause of dementia. To understand the difference between Alzheimer's and other causes of dementia go to:

Merck & Co., Inc.
www.merck.com/pubs/mm_geriatrics/sec5/ch40.htm

Alzheimer's Association of Australia
www.alznsw.asn.au/

Janssen-Cilag
www.dementia.com

WebMD
www.webmd.com

SECOND OPINIONS

* Top of Page * Diagnosis * Dementia * Second Opinions * To Tell or Not To Tell *

Second opinions never hurt. Most people start out with their regular physician. A lot depends on his background and experience with Alzheimer's. If he rules out other possible causes through various tests, including a brain scan; if you feel confident about his conclusions, and he's prescribing a course of care, including trying available drugs; if you feel he'll be on top of new treatments that come on-line that may help your loved one for many years to come; and if you and your loved one feel comfortable with him, then you might consider staying with him. However, at any time you should feel free to go to a neurologist or geriatrics specialist who is likely to have more experience with the elderly and brain diseases. You can always go back to your own doctor with a better idea of what's going on.

TO TELL OR NOT TO TELL

* Top of Page * Diagnosis * Dementia * Second Opinions * To Tell or Not To Tell *

To tell or not to tell a patient that he has Alzheimer's disease is a very personal matter and will often bitterly divide families. But it's best left to the primary caregiver to make that decision, and it should be based only on whatever makes the caregiver feel the most comfortable.

When a caregiver feels ambivalent, she should first listen to all sides; especially ask what the doctor's experience has been about telling patients. But finally, it is not for the doctor, friends, or family members to decide unless they are the ones who will have to live with the decision and the patient 24/7.

Not all patients will understand what Alzheimer's is and many will keep asking the same things about it over and over. On occasion another simpler explanation may be preferable. If they ask, "What's the matter with me?" it's perfectly reasonable to honestly say something like, "You are having some problems with your memory, and the doctor is helping you with that." Honesty is the best policy when you're talking about shoplifting, but honesty is not always the kindest thing you can do, and Alzheimer's patients need kindness more than honesty.

Some patients take the news very well and are relieved to understand that there's a name for the condition affecting them and feel empowered about participating in their own care.

Sometimes the caregiver wants to tell the patient he has Alzheimer's to ease her own heart, to share this heavy burden. This is also true about sharing bad news, especially when it's someone the caregiver has been sharing with for years, and none of this is a bad thing.

But the caregiver usually knows the patient best and should make the judgment after examining her own motives for wanting to tell or not. Like so many other things with this disease, there are rarely easy answers that everyone will agree on.

If someone goes against your wishes and tells your loved one anyway, and he is acutely upset, you can tell him that person was wrong. He'll forget soon enough. As time goes on, patients forget much of their life before they got Alzheimer's; they live only in the moment. It's one of the few blessings this disease offers them.

Washington University in St. Louis MO
Click - 'Confronting LO'
www.adrc.wustl.edu/alzheimer/frame1.html


(Alzheimer's Surgery)

It was Tuesday, February 8, Justin's twelfth birthday. The surgery in Bad Pyrmont was Thursday, January 14, less than a month earlier, and Bernie was sitting across from me at the kitchen table in front of the newspaper I'd left there. He began some gibberish, and the only word I understood was 'activism'. That's not a word someone uses in everyday conversation, gibberish or not. His hand was on the paper, and upside down I read the word 'activism'. I literally came apart at the seams-HE WAS READING! Bernie hadn't read a single word in well over a year.

Just to make sure, I looked through the paper to find a few simple words in bold type and asked him to tell me what they said. He looked, and I kept asking, and he kept looking, and finally he said, clearly, "TIME TO PLAY". That's exactly what it said. He was reading, there was no doubt about it, he was reading. My God, he was reading!

I phoned Matt and Debby and Dr. Goldsmith. I wanted to phone the world. You can't imagine what it's like unless you've seen someone lose the ability to read, but it was a miracle to me. Dr. Goldsmith said he was going to call Germany and tell them.

After that, Bernie seemed completely exhausted and we put him in his bed. I leaned over and said, "I told you that you were going to get better, didn't I?" His smile was clear and understanding when he answered, "Yes, I know that." We were actually having a 'send-message, return-reply' conversation that made sense. Then he fell asleep.

* Home * What you Need to Know * Words to Live By * Author's Notes*

* Endorsements * Foreword * Table of Contents * Sample Book Pages *

* Statistics * Stages of Alzheimer's * Save the Caregiver *

* Memory Loss in Alzheimer's, Dementia, & Normal Aging *

* Driving * Delusions & Hallucinations *

* I Have Alzheimer's * Remarks & Reviews *

* You're in Good Company * Where to Buy the Books *

* And God Laughs *