ElderCare Beacon Newsletter

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ElderCare Beacon
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March 1, 2001                                                                      Vol. 4, No. 5
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ElderCare Online – The Internet Community of Elder Caregivers
http://www.ec-online.net
"Tell me why – Show me how – Hold my hand" (sm)
Serving the Needs of Caregivers Since 1997

Dear Friends,

As I write this, a thick dusting of snow is accumulating. This winter was "normal" for us on the East Coast – several modest snowfalls and cold weather throughout (compared to the last few years of warm winters). Yet I can see Spring just around the corner. All we have to do is grin and bear the next few weeks of cold weather.

This issue is fairly short (I will send a supplement next week). I spent yesterday writing the news update on the newest Alzheimer’s Disease drug, Reminyl. I saw many short articles about it published on the Internet, but I decided to write my own version of it, putting it into perspective for our community. While the release of the drug (expected in May) is great news, it is still not a major advance. I hope to be able to report more progress when I attend the July Alzheimer’s Association meeting where respected clinicians will share their insights. Until then, we have to be satisfied with this small bit of progress – another arrow in the quiver.

I hope that you will be able to join us on Thursday, March 15 for a special chat session on "Choosing a Nursing Home." Our guest host, Marilyn Rantz, is a professor of nursing at the University of Missouri-Columbia Sinclair School of Nursing and the author of "The New Nursing Homes: A 20-Minute Way to Find Great Long-Term Care." She spent years as a nursing home administrator and will provide ideas and answers for caregivers considering moving their loved one to a care facility. You can submit advance questions (see below) or attend the chat live.

We will have a short delay this month in launching our Hot Topic. We are putting the finishing touches on the articles and hope to launch it in a week. You will receive a special e-mail announcement.

Finally, I would like to thank you for welcoming the students from Pace University who participated in our discussion groups. They found the sessions extremely useful – this knowledge of caregiver issues and needs will help them to shake up the medical establishment in the coming years to better serve our needs.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

News and Views: New Drug Approved for Alzheimer’s Disease
ElderCare Forum: Digests
Respite Rewards: "We Laugh to Survive" Winners
Solution Sets: Tax Planning 2000
Caregiving Tips: Bathing and Incontinence by Edyth Ann Knox
Live Discussion Groups: Schedule for March
Subscription Information

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NEWS AND VIEWS: New Drug Approved for Alzheimer’s Disease

The US Food and Drug Administration has approved the fourth treatment for those with mild to moderate Alzheimer’s Disease on February 28, 2001. Reminyl (galantamine hydrobromide) can improve memory, behavioral symptoms, and the ability to perform activities of daily living. The drug will be available in pharmacies by May, according to the Janssen Research Foundation, a unit of Johnson & Johnson, the maker of the drug.

The drug does not cure or reverse the disease, but rather slows its progression so that people taking it stay well longer and get worse slower. It is considered to be just as safe and effective as existing treatments, according to an FDA spokesperson.

Overall, three-quarters of the individuals taking the drug in studies saw improvements in one or more of the following: memory, behavior, and activities of daily living, Janssen said. While the improvements were not dramatic, the results were better than those not taking the drug. Individuals who do not take Reminyl (or one of the other available treatments) will see a steady decline in memory, behavior and abilities.

Scientific Studies Reveal Benefits and Risks

According to the results of several clinical studies, individuals taking the new drug showed small but noticeable improvements in memory, orientation, attention, reasoning, language, and activities of daily living. Lesser degrees of improvement were seen in patients with very mild or very advanced dementia. Over time, cognitive abilities in people taking the drug tend to improve, level off and then decline again. The beneficial effects of Reminyl are lost when the drug is discontinued. Individuals who did not take the drug suffered small to moderate declines in cognitive ability over the course of the study.

Twenty to forty percent of people taking the drug experienced side effects such as nausea, vomiting, diarrhea, anorexia, and weight loss. Patients can reduce side effects by taking the drug with food, using anti-nausea medication, and ensuring adequate fluid intake. If the patient must discontinue the drug for several days or longer, they should restart at the lowest possible dose rather than at the last dosage level.

Drugs Under Development

Reminyl is the fourth Alzheimer’s Disease treatment approved for use in the US, after Cognex (tacrine hydrochloride), Aricept (donepezil hydrochloride), and Exelon (rivastigmine tartrate). All belong to the same class of drugs, acetylcholinesterase inhibitors. These drugs increase the concentration of acetylcholine, a brain chemical that helps nerve cells communicate. The longer acetylcholine remains in the brain, the longer those cells can call up memories. These drugs do not "cure" or reverse the underlying dementing process.

US drug companies are working on about two dozen new drugs for Alzheimer’s Disease and other dementias, according to the Pharmaceutical Researchers and Manufacturers Association. Several of them are in advanced stages of testing.

References

   1. Janssen News Release: http://www.janssen.com/feature_articles/feature02282001.html
   2. Government Approved Prescribing Information and Results of Studies: http://www.janssen.com/products/pi_files/reminyl.pdf
   3. Drugs Under Development for Older Americans: http://www.phrma.org/searchcures/newmeds/older2000/olderamericans_newmed.pdf
   4. Clinical Trials for Alzheimer’s Disease: http://www.alzheimers.org/trials/index.html
   5. U.S. Food and Drug Administration: http://www.fda.gov
   6. ElderCare Online's Medical Research Assistant: http://www.ec-online.net/Assistants/medresassistant.htm

(Note: you will need Adobe Acrobat to read items 2 and 3. These external hyperlinks may open very slowly if accessed from a slow modem)

ELDERCARE FORUM: Subscribe to Digests

With the redesign and upgrade of the ElderCare Forum, we now have the capability to send weekly "digests" of the messages posted. At first we will be testing this out with two sections: "News and Views" and "We Laugh to Survive." The digests make it easier to stay on top of the numerous messages posted. You will still need to stay subscribed to this newsletter – the digests are a supplement.

To receive the weekly digest, you need to register for the Forum and then subscribe to the digest of your choice. This is not a complicated process. However, there are a few glitches that remain. We are running the limited list of digests to help work out the kinks.

To begin the process, go to http://216.122.139.136/cgi-bin/Ultimate.cgi?action=intro and click on the "register" hyperlink in the upper right corner. Complete the brief registration form and wait for your password to be e-mailed to you. Then return to the Forum and select the "Subscribe to a Digest" hyperlink just below the original registration link. Subscribe to the digest of your choice by checking the appropriate box.

Becoming a registered member of the Forum entitles you to receive these digests, as well as to get instant e-mail alerts whenever someone replies to a message that you post to the Forum. Additionally, we flag all of your unread messages each time you return to save you time. The software enables a "cookie" on your browser that makes these features possible. I do not follow you around and keep track of your actions. To be honest, I have no idea how the cookie works!

RESPITE REWARDS: "We Laugh to Survive" Winners

Congratulations to our resident humorists who posted their jokes and anecdotes to the ElderCare Forum’s "We Laugh to Survive" section. This new area has quite a few funny items to help relieve some of your stress. The five winners will receive a copy of a caregiving book, a box of chocolates or a gift certificate to Amazon.com.

Please take a look at the Forum. We have three active moderators who are there to welcome you, answer your questions, give you support and suggest resources. Also, it has recently been redesigned to make it easier to find relevant discussion items. If you are unable to make it to our chatroom, then this is your next best avenue to find answers and support.

Click here to go to the ElderCare Forum…http://216.122.139.136/cgi-bin/Ultimate.cgi?action=intro

SOLUTION SETS: Tax Planning Assistant 2000

This is that dreaded time of year – we are at the low point of winter AND we have to start organizing our tax return information. Caring to a loved one often means helping with their taxes as well. U.S. individual taxes are due by midnight on Monday, April 16.

ElderCare Online’s Tax Planning Assistant 2000 takes the hassles out of filling out and filing tax returns. Our newest interactive assistant directs you to online resources where you can get the necessary tax forms, instructions and publications. It also includes several time- and money-saving tips for taxpayers directly from the IRS and one of the most prestigious tax and accounting firms, Ernst & Young.

You can fill out and file your taxes the old fashioned way – with pencil and abacus – or you can use planning software purchased from Amazon.com. Since this is the Internet Age, we provide links to the best software packages and access to online reviews and rebates. By buying books and software through ElderCare Online, you help to keep the site free of annoying banner advertisements and support this free newsletter.

The Tax Planning Assistant features:

  • comprehensive packages of U.S. Federal tax forms, instructions and publications that you can easily download and print off for free;
  • forms for home health aids, elderly tax credit and other senior citizen tax issues;
  • easily understood tax tips, common mistakes and overlooked deductions from the experts;
  • state-by-state links to tax agencies for their forms and resources;
  • links to local counseling and assistance programs for elderly taxpayers;
  • online purchasing of software packages and books to speed up your planning and reduce the chances of mistakes;
  • packages of forms and instructions for previous tax years; and
  • additional online resources.

Access the Tax Planning Assistant before April 16 on ElderCare Online at http://www.ec-online.net/Knowledge/SolutionSets/taxplanasst00.htm.

CAREGIVING TIPS: Bathing and Incontinence by Edyth Ann Knox

Edyth Ann has added two more short articles to our growing library of caregiving tips: Bathing and Incontinence. Each of these articles contains practical suggestions from her many years of hands on caregiving experience. They compliment the existing booklets and articles on related topics that already have been published to the site.

You can access the tips at:

- Tips on… Bathing at http://www.ec-online.net/Knowledge/Articles/bathtips.html
- Tips on… Toileting at http://www.ec-online.net/Knowledge/Articles/toilettips.html

LIVE DISCUSSION GROUPS: Schedule for March

We have several new chat sessions. Please take a look at our new schedule and join one of the groups if you can work it into your schedule.

March 7 (Wednesday 1:00 to 2:00PM EST) "Coffee Talk:" Host Rich O’Boyle welcomes caregivers for a social and networking discussion group on the topic of "Meeting Other Caregivers."

March 7 (Wednesday 9:00 to 11:00PM EST) "Bubblehead’s Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Bathing and Personal Care."

March 8 (Thursday 9:00 to 11:00PM EST) "Healing Loss:" Host Julie Siri leads a discussion group for people who have lost a loved one to premature death, Alzheimer’s Disease, or other illness.

March 14 (Wednesday 1:00 to 2:00PM EST) "Coffee Talk:" Host Rich O’Boyle welcomes caregivers for a social and networking discussion group on the topic of "Meeting Other Caregivers."

March 14 (Wednesday 9:00 to 11:00PM EST) "Bubblehead’s Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Incontinence."

March 15 (Thursday 9:00 to 11:00PM EST) "Choosing Great Care Facilities" with guest host Marilyn Rantz, a professor of nursing at the University of Missouri-Columbia Sinclair School of Nursing and the author of "The New Nursing Homes: A 20-Minute Way to Find Great Long-Term Care." Marilyn, who spent years as a nursing home administrator, will provide ideas and answers for caregivers considering moving their loved one to a care facility. Submit an advance question to askcasey@ec-online.net.

Transcripts from previous discussion groups and guest sessions are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm. From now on, we will only be archiving the transcripts of guest speakers.

SUBSCRIPTION INFORMATION

The ElderCare Beacon is published bimonthly by ElderCare Online. To subscribe to this free newsletter, go to the main page of the website at http://www.ec-online.net and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).

To unsubscribe from this list, simply (1) reply to this email message with the word "UNSUBSCRIBE" in the Subject: line, and (2) include your e-mail address in the body of the message. Many e-mail programs do not put your complete name@ISP.com in the To: line, so it is impossible to track down your address.

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