Alzheimer's Answers: The Stages of Alzheimer's Disease 12/8/00


Alzheimer’s Answers 12/8/00
"The Stages of Alzheimer’s Disease: What’s Next, What to Expect"
with Dr. Karen Bell, Taub Institute for Alzheimer’s Disease and the Aging Brain

Chat Room Disclaimer

This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, Columbia University and Dr. Karen Bell MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

>> RichOBoyle has joined channel #XC.1993632

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RichOBoyle> hello Dr.Bell and welcome

RichOBoyle> Hello Fervt and welcome to Alzheimer's Answers

[Fervt123] Hello everybody!

RichOBoyle> It is still a bit early so let's wait a few minutes before really starting

RichOBoyle> Fervt...where are you chatting from?

[Fervt123] From Venado Tuerto, Argentina.

RichOBoyle> are you a family caregiver or a professional?

[Fervt123] I am a family member. My father (80 years old) has been diagnosed Alzheimer.

[Fervt123] As a matter of fact, he suffered a slight stroke in November 1996 that affected the mobility of his left arm.

[DrKBell] Are there any questions?

[Fervt123] However, after a few days he re-gain complete control of the arm- What I didn’t know was that a few months later (march 1997) he was completely demented.

RichOBoyle> why don't we get started ...fervt, do you have any specific questions?

[Fervt123] Yes, I have some questions.

[DrKBell] I'm ready

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RichOBoyle> hello Loretta and welcome! we are just getting started

[Loretta404] Hi again

RichOBoyle> Here is a question emailed from a person who could not be here:

RichOBoyle> What are particular dietary and nutritional considerations with the various stages of the disease? As the disease progresses, does the LO need more of certain nutrients and less of others?

[DrKBell] A balanced diet is just as important for patients with AD as it is for everyone else. Many elderly individuals use multivitamins to supplement their dietary intake. Loss of appetite and weight loss can occur as a side effect of some of the medications used to treat AD. These medications include Aricept and Exelon. Loss of appetite may also occur in the later stages of AD without medication.

[DrKBell] High calorie nutritional supplements may be added to or in some cases substituted for meals. A poor nutritional status is a significant problem because it can make patients more susceptible to infection, and other medical problems. Dehydration is also another common problem and caregivers can encourage fluid intake to avoid the problem.

RichOBoyle> are these nutritional deficits and dehydration more of an issue in later stages of the disease?

[DrKBell] They are more difficult in later stages of the disease because it is more difficult to have the patient understand why they need to take food and liquid.

[Fervt123] Firstly, it is known that there were no medications or drugs up to the moment that would delay or even reverse dementia. Neotrophin is doing a good job on ALZ. Unfortunately there will some time until the drug is approved by FDA.

[Fervt123] So, my question is: Is there any chance for people who don’t participate in clinical trials to get Neotrofin, even though it has not been approved yet?

[DrKBell] That is a good question Fervt123.

DrKBell] Drugs such as Neotrophin are exciting and offer hope. However, without evidence of safety and efficacy it is never a good idea to try medications that could have potential harms and benefits.

[DrKBell] In my practice, I don't recommend unproven agents to my patients.

RichOBoyle> how can people get involved in clinical trials if they want to help researchers prove efficacy for these experimental drugs?

[DrKBell] The Alzheimer's Association is a wonderful resource for learning about new trials in your area

[Fervt123] Up to the moment, Neotrophin has proven to be very promising.

[DrKBell] In addition, the NIH offers a listing of all clinical trials in their websites.

[DrKBell] Neotrophin has only been studied in small samples with short exposure periods. It is far too premature to call it promising.

RichOBoyle> Alzheimer's Disease Research Centers often conduct clinical trials...we have a list of them in the Medical Research Assistant on this site.

[DrKBell] However, we all await important results from these studies.

[DrKBell] Yes, you cal learn about Columbia trials by reaching our website, http://www.alzheimercenter.org

RichOBoyle> here is another question from a member who could not attend:

RichOBoyle> How do you handle hitting? I duck a lot but my mother in law was an abusive parent and an abusive wife. Now I am the target. She usually catches me by surprise almost as if she just waits for opportunities. Is physical aggression common in some stages rather than others? Are there indicators of whether someone will become physically aggressive. I heard that quiet people become aggressive and aggressive people become passive.

[DrKBell] Some data suggests that old traits are intensified in AD, but one cannot accurately predict based on pre-morbid (before illness) personality, whether a person will be aggressive or passive with AD. There are several options to treat aggressive behavior. Non-medication techniques involve removing environmental stimuli that may trigger these outbursts.

[DrKBell] It has been suggested that the caregiver look for cues that the patient is decompensating, back off and let the patient relax, be receptive and have patience, lead patient to a quiet area, and keep calm.

[DrKBell] If possible distract the patient with other tasks. If these techniques fail to produce results, physicians have many medications to choose from to treat agitation, restlessness and aggressive behaviors. Your physician can use the lowest tolerated dose of medication that is effective in relieving some of the symptoms of agitation.

RichOBoyle> what do you mean by "decompensating?"

[DrKBell] That the patient's agitation is getting worse.

RichOBoyle> We have a few articles on agitation and behavior management in the Alzheimer's & Dementia Care Channel, including one on Managing Agitation Behaviors.

[Fervt123] My father used to be always in bad mood in the very early stages of the disease. Now, as the disease has evolved, he is extremely passive and calm. Almost never gets angry.

RichOBoyle> fervt...would you like to ask another question?

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RichOBoyle> hello alice and welcome to Alzheimer's Answers with Dr. Karen Bell

[Fervt123] He is taking daily 500 mg vitamin B1, 500 mg. vitamin B6, 6 mg vitamin B12, 2000 UI vitamin E, 3mg Beta-carotine and 9,33mg Zinc Oxide. I wish to add Ginkgo Biloba but I haven’t done so because it may lead to bleeding together with Vit E as both thin the blood. Would there be any risk if I add GB?

[DrKBell] You should always consult your physician before adding new medications or supplements

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[DrKBell] Your physician may want to consider whether the combination of Vitamin E and gingko will put your father at risk for any type of bleeding problems.

RichOBoyle> We have an article on Ginkgo Biloba and Alzheimer's Disease

RichOBoyle> Hello arlene and welcome to Alzheimer's Answers with Dr. Karen Bell

RichOBoyle> alice, would you like to ask Dr. Bell a question?

[alicebrady] Do you have any studies with Vitamin E

[alicebrady] I would like to know if there are any studies with Vitamin E

[DrKBell] One large study demonstrated that Vitamin E slowed the clinical progression of Alzheimer’s Disease in patients with moderately severe disease.

[DrKBell] We don't know if Vitamin E will work with milder forms of disease or to prevent the disease and so, studies are going on now to answer these questions.

[alicebrady] do you have any ongoing studies now at your site

[DrKBell] We are starting a study for patients with AD to determine whether Vitamin supplements such as B12, B6, and Folate can have a beneficial effect in AD

[DrKBell] Studies in patients with moderately impaired AD used very high doses of Vitamin E, 2000 IU

[alicebrady] Is there a number that I can call to see if whether I can participate?

[DrKBell] We do not know what doses should be used in milder disease, or for prevention

[DrKBell] Call Gina Camilo, at 212-305-5805 for more information about the vitamin studies

[DrKBell] Our website is http://www.alzheimercenter.org

RichOBoyle> Here is another question from a member:

RichOBoyle> Do other forms of dementia progress in such well-observed stages as Alzheimer’s Disease?

[DrKBell] In the AD staging scales the progression is based on the non-memory changes. Other forms of dementia may have different non-memory symptoms.

[DrKBell] The stages of AD are characterized by a slow progressive decline. Other forms of dementia such as dementia with Lewy bodies may have a fluctuating course while patients with vascular dementia may have a stepwise decline.

RichOBoyle> if your loved one does not seem to be following the AD stages, could that be an indication that the dementia is non-AD?

[DrKBell] Only an evaluation by a clinician can insure that the diagnosis is accurate. If the signs change it is important to have the patient re-evaluated or discuss it with the doctor.

[DrKBell] The public staging scales such as the GDS, CDR are only guides to the symptoms that the patients might experience

[Fervt123] Are anti inflammatory drugs (NSAIDs) like Celecoxib beneficial for ALZ disease?

[DrKBell] The anti-inflammatory hypothesis is a very exciting one but has not been tested in patients with AD

DrKBell] Newer NSAIDS such as Celecoxib may be safer than the traditional NSAIDS, but we do not know if they are effective, that is, we do not know if they work.

[DrKBell] Clinical trials are currently under way to answer these questions.

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RichOBoyle> Hello Marie and welcome to Alzheimer's Answers with Dr. Karen Bell

RichOBoyle> are you ready for another question?

[DrKBell] Yes

RichOBoyle> My mother is in a nursing home and we have been told with her dementia and other health problems she is terminal. How do we help her? She has her good moments and her bad lately they are more bad then good. We just want her to be as comfortable as possible and to help her to start eating and taking her medications. She at times will not eat and she fights when it comes time to taking her medications. How do we help her to understand the importance of doing both of these things?

[DrKBell] You do not mention the severity of your mother’s dementia, but perhaps she is too impaired to be reasoned with about the importance of eating.

[DrKBell] In these cases, supportive care involving assistance with feeding and companionship may provide maximum comfort.

[DrKBell] If however she is in the mild or early stages, this difficult behavior may be a sign or symptom of depression and she should be evaluated for treatment.

RichOBoyle> Can you recommend any techniques to improve eating and taking medications?

[DrKBell] Often times companionship and preparing the food in small amounts or small frequent meals is helpful.

[Marie1026] I have heard a lot recently about estrogen and AD. Are there benefits of taking estrogen? My mother had AD, and I am concerned that I may be susceptible.

[DrKBell] Let me answer the estrogen questions next

[DrKBell] Several recent studies suggest there is no benefit of estrogen in AD patients, BUT...

[DrKBell] there is data to suggest that estrogen may prevent or delay AD

[DrKBell] To find about more such studies, particularly women who have a family history of AD, you can call 877-DELAY AD for more information , or our website, http://www.delay-ad.org.

[Fervt123] Only women can take estrogen. That’s not for men.

RichOBoyle> marie also mentioned that she is concerned that she might be susceptible...

[Marie1026] I have never considered being in a trial before. Are there benefits to being in a study? I worry about how I would be treated by the staff.

[DrKBell] We have shown that patients who participate in research actually do a bit better than patients with the same level of disease.

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RichOBoyle> welcome back arlene!

[Arlene252] Hello

[DrKBell] This may be because participating in research means having added attention to the patient and the caregiver from doctors and other medical research staff

[Marie1026] What If I start and don't want to continue?

[DrKBell] Most research studies are very careful to protect your confidentiality

[DrKBell] Research subjects should know they can discontinue any study at any time without prejudice to their care

RichOBoyle> We have an article on Participating in Clinical Trials: What You Need to Know by Dr. Mary Sano and Christine Weber, Ph.D.

RichOBoyle> we have about 10 minutes left....

RichOBoyle> Dr. Bell, would you like to add your comments on driving and then...

RichOBoyle> arlene would you like to pose a question?

[DrKBell] Many of my patients ask about driving.

[DrKBell] Driving is a sensitive issue and can be the subject of many battles between caregivers and patients with AD. Some AD patient may possess skills that are adequate for safe driving.

RichOBoyle> and then I will have the final question :)

[DrKBell] Although there is no consensus among clinicians on when to restrict driving, we generally follow a few rules. In early AD, limit night and long-distance driving if there have not been any accidents.

[DrKBell] If the caregiver notices that the AD patient has so-called "lane deviations" meaning driving too close to the cars on either side, or that the patient is uncertain about the controls in the car or is not keeping up with traffic or is hesitant when entering intersections, the doctor would probably restrict all driving at this point, even though the patient has not been in an accident. Patient with moderate or severe AD should not drive.

RichOBoyle> AARP, and most Departments of Motor Vehicles offer pamphlets on Safe Driving...ElderCare Online has an article in the Home Care & Independent Living Channel on Taking Away the Car Keys: Suggestions for Caregivers with some very practical tips.

[Arlene252] What if my father refuses to give up driving?

[DrKBell] Some patients in the early stages are convinced that their driving skills are good and continue to attempt to drive after the doctor has restricted them. Rehabilitation centers offer driving simulations to test real world situations and monitor skills. (This is not similar to a road test from the DMV, which are geared to new drivers.) An abnormal result on one of these tests can be reported to the DMV to revoke a drivers license. This should not be your first choice in

RichOBoyle> Are hallucinations, paranoia and visual disturbances more common in certain stages, or can they appear in any of the stages. Are these changes more common in other types of dementia so they are diagnostic or indicate a rarer form of dementia?

DrKBell] Hallucinations and delusions can present in the moderates stage of AD. Recurrent visual hallucinations are common in "dementia with Lewy bodies."

[DrKBell] Rich, thank you for the chance to share this time with your audience

[Fervt123] Thank you very much for your time.

RichOBoyle> You're welcome... thank you everyone for attending...

RichOBoyle> in the coming months we will present more Alzheimer's Answers sessions with experts from the Taub Insitute

[Marie1026] Rich - I have to leave - get back to work. I look forward to seeing the transcript.

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[Arlene252] Good bye all. Lovely chatting.

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Chat Room Disclaimer

This Chat Room provides general information that is for educational purposes only and should not be considered as offering medical advice. The information that is made available by this Chat Room should not be used for diagnosing or treating a medical or other health condition. Viewers and participants should always consult a physician or other qualified healthcare provider for the diagnosis or treatment of any medical or health condition. ElderCare Online, Columbia University and Dr. Karen Bell MAKE NO WARRANTIES, EXPRESS OR IMPLIED, AS TO THE VALUE, USEFULNESS, COMPLETENESS OR ACCURACY OF ANY OF THE INFORMATION THAT IS MADE AVAILABLE BY THIS CHAT ROOM.

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