ElderCare Beacon Newsletter

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ElderCare Beacon
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December 1, 2000                                                                                       Vol. 3, No. 22
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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,

It is hard to believe that we are heading into the final month of 2000. So much has happened this year: we survived a major technical upgrade, doubled the number of pages and articles on the site, welcomed numerous new members and introduced several Mentors to our online community. As we continue to grow and evolve, I commit that we will retain a comfortable and sincere community where all elder caregivers can find knowledge, guidance and support.

In our continuing effort to provide you with the highest quality caregiving resources on the Internet, ElderCare Online has joined with two prestigious academic institutions, Pace University and Columbia University.

This month, the Institute for Healthy Aging at Pace University’s Lienhard School of Nursing will co-produce the Healthy Aging Hot Topic. Dr. Joanne Singleton has a life-long passion as a nurse, college professor and activist to educate people about improving their health and well-being. When we met several months ago, we started a dialogue that focused on finding novel ways to help the aging population in general, and caregivers in particular. The result is this month’s Hot Topic. Read below for more information and details.

Meanwhile, I have been brainstorming with Columbia University since Dr. Mary Sano hosted a special chat session in February on Alzheimer’s Disease research. Beginning this month, we will be co-producing a year-long series of chat session called "Alzheimer’s Answers." Our goal is to provide dementia caregivers with access to some of the leading researchers and care management professionals in the field. The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain is a nationally recognized research center. About every month a professional from Taub will host a chat session to answer your questions about dementia.

As part of our Healthy Aging Hot Topic, we are conducting a survey of caregiver attitudes toward healthy lifestyles, including exercise, nutrition and memory enhancement. All participants in the survey will be eligible to receive one of fifteen complimentary exercise videos and workbooks developed by the National Institutes on Aging. It is our way of saying "Thank You" for sharing your opinions and "Get Your Heart Pumping!"

Finally, our staff writer Phyllis Laudano and her son James have helped complete the last of the Neighborhood Networks – state-by-state listings of local resources and services available for caregivers. I started this project with the hope that it will make it easier for caregivers (especially those caring long-distance) to find support close to home.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

The Caregivers Advisory Panel: Giving Caregivers a Voice
Hot Topic: Healthy Aging
Featured Skill Builder: Strategies for Managing Stress
Alzheimer’s Answers: Taub Institute Expert Discussion on "The Stages of Alzheimer’s Disease"
Neighborhood Networks: New State and Local Resources Added
Top AD/Caregiving Sites: The Caregiver Network, Inc.
Live Discussion Groups: Schedule for December
Subscription Information

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THE CAREGIVERS ADVISORY PANEL: Giving Caregivers a Voice

ElderCare Online is pleased to announce that it has formed a Collaborative Partnership with The Caregivers Advisory Panel (TCAP) and invites you to learn more about the benefits of membership in TCAP. TCAP is comprised of family caregivers, like you, from all across the United States, representing most all caregiving situations and circumstances. TCAP conducts market research surveys with caregivers who are panel members to learn about their ideas, opinions, needs and wants.

Until TCAP, no one has ever assembled a national panel of family caregivers to advise manufacturers and service providers who design products and services that caregivers use every day.

By participating in TCAP research surveys you’ll get to:
- Speak out and share your needs, wants and opinions –
- Learn about and test new home health products;
- Be a part of the innovation process!
- Earn cash and become eligible for special cash awards

And -

- Membership in TCAP is free!
- Your responses to surveys are completely confidential and private.

Click here to join now http://www.ec-online.net/Connections/tcap.html

Join By November 22 and be eligible for the November New Member Bonus Drawing for Multiple $100 Cash Awards AND you’ll be invited to participate in the TCAP Annual Survey: "Caregiving in the US 2000 Edition: Needs, Issues and Insights" is the first national panel study of caregiver needs, wants and opinions related to home health care products (with focused sections on incontinence, skin and wound care, nutrition). For participating in this survey, you’ll be paid $5 and become eligible for a $500 Cash Bonus Drawing – Use it for respite or spend it any way you like!

Click here to join http://www.ec-online.net/Connections/tcap.html

HOT TOPIC: Healthy Aging

Healthy diet and behaviors are the gift that you give yourself. As caregivers, you have particular challenges maintaining your own health and vitality. This topic is a joint production of ElderCare Online and the Institute for Healthy Aging at Pace University's Lienhard School of Nursing in New York City. The information contained herein is intended to help men and women 40+ to enhance their wellbeing now and for the future.

If you are stressed out and unwell, then you will not be able to care for your loved one to the best of your ability. This month we are publishing a series of articles that are designed to help you maintain your own health. These are the first of several articles that will be published throughout the month:

- Caring for Yourself by Creating a Healthy Lifestyle by Joanne Singleton, Ph.D.
- Memory Enhancement by Joanne Singleton, Ph.D.
- Proper Nutrition 40+ by Marie Truglio-Londrigan Ph.D., R.N.,C.S., GNP

We also have a quick online survey that we ask you to complete. We are trying to get a better idea of caregiver attitudes toward healthy aging and what types of approaches you have taken to maintain your own health. The first fifteen respondents will receive a complimentary exercise video and workbook as a "thank you" for taking the time to share your opinions. As always, your privacy will be respected and your e-mail address or personal information will not be compiled and sold. You can start the survey by accessing it from the Healthy Aging Hot Top or clicking here: http://www.zoomerang.com/survey.zgi?AR0WHKQFYMEA6DS8BFFT38B3

Access the Healthy Aging Hot Topic at http://www.ec-online.net/Knowledge/hottopics/healthyaging.htm. Stay tuned for the next newsletter. We will be introducing additional articles, book reviews and a stress management tool.

ALZHEIMER’S ANSWERS: Taub Institute Expert Discussion on "The Stages of Alzheimer’s Disease"

The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain and ElderCare Online are collaborating to provide caregivers with a year-long series of online educational sessions on dementia topics, "Alzheimer’s Answers." About every month, ElderCare Online (http://www.ec-online.net) will produce a two-hour session where caregivers can chat with a skilled professional from the Taub Institute (http://www.alzheimercenter.org) to discuss topics that help improve their knowledge of dementia and ability to care for their aging loved ones.

The first session will be conducted on December 8 from 1PM to 3PM on the topic of "The Stages of Alzheimer’s Disease: What to Expect." Dr. Karen Bell, a leading expert on Alzheimer’s Disease research and treatment, will chat with you in a comfortable and casual setting. Caregivers are invited to attend the sessions in person through the ElderCare Online website (http://www.ec-online.net). Those who can not attend at the specified time may e-mail advance questions to rich@ec-online.net or read the transcript of the session the following day. Future topics and group leaders will be announced in this newsletter.

Over the next year we will be presenting chat sessions on topics such as these: The Science of Alzheimer’s Disease, Research Update, Diagnosing Alzheimer’s Disease and Behavior Management. What topics would you like to see in the future? E-mail questions and suggestions to rich@ec-online.net.

The Taub Institute for Research on Alzheimer's Disease and the Aging Brain is a new interdisciplinary institute in Columbia University's College of Physicians and Surgeons in New York City. Their mission is to develop the means to identify vulnerable individuals at risk for Alzheimer's Disease and devise new therapies to prevent or delay disorders of the aging brain. If you or a loved one is in need of patient care, they can offer you the most advanced diagnostic and clinical care currently available. You can make an important contribution in the quest to develop new treatments by participating in clinical trials, signing up for brain donation, or supporting their research and clinical programs.

These chat sessions are not intended to serve as medical advice or diagnostic tools. They are educational in nature and should never substitute for the regular relationship between the patient and their caregivers, physicians or other heath care providers. Caregivers with medical emergencies or crises should contact their local emergency assistance rather than these chat sessions.

FEATURED SKILL BUILDER: Strategies for Managing Stress

Usually some action can be taken to decrease stress. Changes do not need to be major to make an important difference. Sometimes letting go of unrealistic expectations or adjusting your standards of how frequently or how well you perform a task (such as housekeeping) will make a big difference. Once you know the source of stress you must determine which ones you can do something about and which are beyond your control. Successful coping involves accepting what you can and cannot change.

For example, you will not be able to change a parent who has always been demanding and inflexible, but you can control how you respond to your parent’s demands. If your father has a progressively debilitating illness, you can’t change that. However, you can develop skills for coping with the changes brought on by his illness.

The "Strategies for Managing Stress" Skill Builder is one of ten reference and activity resources that are designed to give you practical ideas and steps to cope with day-to-day caregiving challenges.

You can access this and other Skill Builders at http://www.ec-online.net/Knowledge/SB/SkillBuilders.htm.

NEIGHBORHOOD NETWORKS: New State and Local Resources Added

There are many directories of eldercare providers and services on the Internet. Unfortunately, many of them are out of date or too cumbersome for quick reference. Over the past several months, ElderCare Online has been completing an easy-to-use guide to state and local resources across the United States.

Each "Neighborhood Network" contains numerous links to the state and local resources that caregivers need the most: tax forms and publications, legal assistance hotlines, insurance counseling volunteers, Medicaid applications and benefits, county services and local Alzheimer’s support groups.

This month, we have finished this helpful guide by adding twelve new Neighborhood Networks to our directory: West Virginia, Washington, Washington DC, Rhode Island, Tennessee, Arkansas, Kentucky, Mississippi, Louisiana, Idaho, Delaware and New Mexico. You can access the national directory through our Community Center, or go directly to http://www.ec-online.net/Community/Neighborhood/neighborhood.html.

In the not-too-distant future we will be adding resources for our friends in the UK, Canada and Australia. If you have comprehensive bookmarks for country, province and local resources, I would greatly appreciate it if you contacted me at rich@ec-online.net to help jump-start this process.

TOP AD/CAREGIVING SITES: The Caregiver Network, Inc.

This month’s featured caregiving site is the Caregiver Network, Inc. at http://www.caregiver.on.ca/.

Caregiver Network, Inc.(CNI), the first of its kind in Canada, is a resource center created to help caregivers of the elderly and ill. Since 1996 the site has been home to the hundreds of pages of helpful, personal information that is the trademark of Karen Henderson's 14 year caregiving experience with her father Ralph. It includes her diary "On My Mind," an honest portrait of what it was like to have a father living in a long-term care facility who suffered from vascular dementia, aphasia and arthritis. Karen's father died recently on Easter Monday, April 24, 2000.

Karen’s goal is to make caregivers' lives easier by providing information on the Internet and in her newsletter, education through the 13-part TV/video series "Caregiving with Julie Callwood," the Canadian Aging and Caregiving Resource Guide and personal assistance and support through her seminar series, Care Management Consulting Service, the Caregiver Club and Care Across the Border.

Caregiver Network has gained an international reputation for providing accurate and uniquely personal information to help family caregivers meet the challenges of aging and eldercare. Karen Henderson, CNI's founder, has become an acknowledged expert in the field; she has been asked to speak at conferences across Canada and has been prominently featured on television, radio and in the print media.

To access Karen’s website go to http://www.caregiver.on.ca/.

Brenda Parris Sibley has established one of the best clearinghouses for Alzheimer’s Disease and caregiving sites on the Internet. She has contacted and worked with a variety of websites to collect them into a directory with rankings showing which are the most popular. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers. In each issue of this newsletter, we will mention one of the many sites that comprise the Top AD/Caregiving Sites List.

You can browse through other sites and vote for ElderCare Online by clicking on the "Top AD/Caregiving Sites" icon on the front page of ElderCare Online at http://www.ec-online.net (or following this complicated link: http://new.topsitelists.com/topsites.cgi?ID=1&user=bpsibley&area=bests. You are welcome to use ElderCare Online as your portal to access these sites, since I know that you will want to visit again and again. I suggest that you access the list often as new sites are added regularly, and as you explore the list, you are bound to find one that didn’t catch your attention last time.

LIVE DISCUSSION GROUPS: Schedule for December

December 6 (Wednesday 9:00 to 10:00PM EST) Dr. Joanne Singleton from Pace University’s Institute for Healthy Aging hosts a discussion on "Memory Enhancement" as part of our monthly Hot Topic.

December 7 (Thursday 9:00 to 11:00PM EST) Host Susan Grossman from ALZwell.com leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

December 8 (Friday 1:00 to 3:00PM EST) Dr. Karen Bell from Columbia University’s Taub Institute for Alzheimer’s Disease and the Aging Brain hosts a discussion group for dementia caregivers on "The Stages of Alzheimer’s Disease: What’s Next, What Can I Expect?"

December 13 (Wednesday 9:00 to 11:00PM EST) Dr. Joanne Singleton from Pace University’s Institute for Healthy Aging hosts a discussion on "Proper Nutrition for 40+" as part of our monthly Hot Topic.

December 14 (Thursday 9:00 to 11:00PM EST) Host Rich O’Boyle leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

December 20 (Wednesday 9:00 to 11:00PM EST) Dr. Joanne Singleton from Pace University’s Institute for Healthy Aging hosts a discussion on "Proper Exercise for 40+" as part of our monthly Hot Topic.

Transcripts from previous guest sessions are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm.

If you regularly attend an online support group or host one, please forward information on it to info@ec-online.net. If you don’t have a chatroom or website, but are interested in hosting a session on ElderCare Online, please fill out the Community Activist form at http://www.ec-online.net/forms/formactivist.htm.

SUBSCRIPTION INFORMATION

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