About Us

Understanding the Day-to-Day Experiences of Dementia Caregivers

Who is conducting the study?

Carolyn Pickering, PhD, RN
Assistant Professor
School of Nursing
University of Alabama at Birmingham

What is the purpose of the research?

The purpose of this study is to learn more about the day-to-day experiences of dementia caregivers, including how often certain behaviors may happen, situations which you may find stressful and how often good things happen.

Who is asked to participate?

You are being asked to participate in a research study because you are age 18 years of age or older and provide unpaid care or assistance to a person with dementia. The caregiver needs to live with the person with dementia. The caregiver also needs reliable access to the internet.

Do you have to be in this study?

No, participation in this study is voluntary.

Study Procedures

The study consists of 3 parts:

Part 1: Now      Part 2: In 6 months     Part 3: In 12 months

For each part you will:

1. Complete 1 extended online survey asking about your caregiving situation, health and wellness. It takes about 20 minutes to answer the questions. You will earn $40 for completing this survey. You will complete this survey online.

2. Complete 21 days of short diary surveys asking about what happened on the day before. Diary surveys can be completed by phone or online . These diary surveys will be sent at 7am each day. It takes about 5 minutes to answer the questions. You will have until 11am to finish them. You will receive reminders if you did not complete it. You can continue to participate in the study if you miss or skip a diary; but we ask you to complete as many as you can. You will earn $2 for each diary survey you complete.

You can choose whether you would like to do the daily surveys by phone or by email.

Before you begin your study surveys, you will be contacted by phone to confirm you provide consent to participate in research. You will receive a phone call from (866) 828-6521 to complete the consent procedures. You must confirm your consent before you can begin the study surveys.

Risks

The biggest risk to participating in this research study is a potential breach of confidentiality. Your participation in this study is not anonymous. We do keep a record of your information so that we can compensate you for your participation (ex: name, address, phone number). We do protect your information by keeping it in secure and locked files.

The answers you provide on the research surveys are anonymous. The research surveys include the extended survey and the diary surveys. By keeping them anonymous this means that we will not be able to tell which survey is your survey, so we will not know how you answered the survey questions. We do keep track of how many surveys you completed, but we cannot link your name or any of your identifiable information (ex: address, phone) to your individual survey answers.

To summarize, the research team knows:

• - Some personal information about you such as your name and address. This information is used to enroll you in the study and compensate you for your time.
• - How many surveys you completed.

The research team does not know which survey answers are your answers.

Costs and Compensation

There are no costs to participating in this research study. You will be compensated for your time for completing the surveys. For each part of the study, you will receive a $40 gift card for completing each extended survey. You will also earn $2 per diary survey you complete (up to $42 for the 21 days). The maximum amount you can earn for each part of the study is $82.

The first $5 will be sent to you within 72 hours of completing the extended survey. Please contact the study team if you do not receive this payment within one week. The remaining amount will be sent to you at the end of the 21-day period.

If you participate in all 3 parts of the study you will also be entered into a raffle for an additional $100 gift card (odds of 1:30) to thank you for your continued support of the project. The maximum you can earn for completing all 3 study parts is $246 + $100 raffle.

Confidentiality

During the study, all documentation, including parts with and without your personal information, are kept in secure locked files that are accessible only to members of the research team.

When the study has ended, the research team will destroy any documentation that has your personal information on it (ex: address, phone number).

When the study has ended, the research team may share the anonymous survey answers with other researchers so that additional research can be done to help family caregivers.

Contact Information

You are welcome to contact the researcher or the University with any questions or concerns about the study. These additional communications will remain confidential to the extent allowable by law.

You can reach the researcher, Dr. Carolyn Pickering, at:

cezpick@uab.edu

If you have questions about your rights as a research participant, or concerns or complaints about the research, you may contact the University of Alabama at Birmingham Office of the IRB (OIRB) at (205) 934-3789 or toll free at 1-855-860-3789. Regular hours for the OIRB are 8:00 a.m. to 5:00 p.m. CT, Monday through Friday.