Please read through the waiver form. A button at the bottom of the page will ask if you agree to the terms outlined in the form. If you agree, please click through to the next level to register. If you have any questions or concerns about the waiver, please contact us at link2care@caregiver.org or call (800) 445-8106.

Background

Link2Care is an Internet-based information and support program for caregivers of adults with dementia. The principal organization for project administration is Family Caregiver Alliance (FCA), San Francisco. Link2Care is available to caregivers living throughout California served by one of California’s 11 Caregiver Resource Centers (CRC). Link2Care is also available to caregivers of patients assessed by the Alzheimer's Research Centers of UC Davis and USCF. Link2Care is made possible through grants and donations.

Purpose

Link2Care was created to offer a reliable, helpful and convenient Internet-based information and support system for family caregivers of adults with disease related dementia. We hope the program will help:

• Increase connections between you and other caregivers and with your Family Consultant, if you choose to use their services, at your CRC.

• Increase access to information and advice on issues related to caregiving.

• Increase your ability to cope and plan for caregiving issues.

• Learn how and for what kind of people Link2Care is helpful.

What is Link2Care?

Link2Care is a service for caregivers available on the Internet. It is only accessible to those with a user name and password. Link2Care can:

• Provide up-to-date medical, social and legal information about caregiving and about specific dementing illnesses family/partner/friend caregivers’ face.

• Help in making decisions such as using community services or placement in a long-term care facility.

• Give advice on where you can go for help and how you can use health and social services effectively.

• Provide an easy way to talk with other caregivers throughout the state and ask professionals such as physicians, nurses, social workers and attorneys caregiver related questions.

What does participation involve?

As a caregiver, you will enroll in Link2Care and will provide a user name and password for entry into the Link2Care site. Please consider your user name and password as confidential information; that is, please do not let anyone else use your user name and password or leave this information visible to anyone else. Periodically we will be asking for your feedback on how Link2Care works for you through surveys which can be filled out online or sent by mail. Your responses will be used to improve the site and services of Link2Care.

How will we protect your confidentiality?

Ensuring your confidentiality is very important to us. Only the staff at FCA and your local CRC site coordinator will have your name. The only exception is that your e-mail address will appear when posting to the Link2Care Discussion Group. Your name and any identifying information will be removed from any data collected, and it will be labeled with an anonymous code number before it is passed on to the rest of the research team. This information includes information taken from the client intake and assessment documents completed by the staff at the CRC and Link2Care registration information. Participant lists will not be provided to anyone outside of Link2Care.

What are the costs of participation?

There is no cost for you to participate in Link2Care, assuming that you already have access to the Internet. Limited scholarships may be available through some CRCs to purchase Internet access or borrow a computer. Contact the CRC in your area for more information.

What are the benefits of participation?

Link2Care enables you to obtain information, advice, social and emotional support and decision aids from the privacy of your home. You will have access to the latest information on new treatments and progress in research relating to dementing conditions. You will have access to advice from experts in medical, legal and caregiving fields.

What are the risks of participation?

There are risks to this project like most things in life, but we believe the risks to be extremely small. We have tried to anticipate and mitigate any risks to the participants.

1. The client satisfaction questionnaires may provoke anxiety. You may refuse to answer any questions that cause you discomfort.

2. Link2Care may feature incorrect information. However, materials are reviewed prior to posting on the site and every effort is made to ensure high quality, accurate information.

3. The Link2Care program has secure measures to maintain the confidentiality and privacy of participants. However, someone with unusually sophisticated computer skills might be able to send unauthorized messages to the site. The computer server used for this program has several levels of security making it difficult for unauthorized entry. Additionally, if you leave your user name and password written down where someone can see it, an unauthorized person could use this information to read your messages or send new ones. We will know if any unauthorized communications have entered the computer and we will be able to interrupt them. We have done our best to design a system that will protect your anonymity even under the most unusual circumstances.

4. 4. It is possible that you may become attached to having Link2Care in your home and will feel some regret and/or loss if continued funding to underwrite the program is not secured. We actively seek support for the program to maintain the Link2Care service for caregiving families so you can continue the connection to this support and information option.

What if you change your mind?

You are free to disenroll from Link2Care at any time. A decision to withdraw will have no effect on your use of the other services offered by your CRC. Please contact the project manager at link2care@caregiver.org or call (800) 445-8106 with any questions or concerns you may have. All contact will be treated confidentially.

Waiver Agreement