Study title: The Impact of Dementia from the Perspective of the Caregiver

Investigators: Rachel Piszczor, Psy.D., Sheiva Nadooshan M.A.

Instruction: I would like to invite you to take part in this research study. Before you decide please review the following information.
Why is this study being done?
This research, “The Impact of Dementia from the Perspective of the Caregiver”, can help to understand the needs and experiences of caregivers. Information obtained from this research study can help create future interventions (e.g. group therapy) that can improve caregiver well being and to better understand the needs of this population.

What will you be asked to do during the study?
Participants will complete an online questionnaire that includes a series of multiple choice and open-ended questions that will be presented to the participant in an online format via Survey Monkey. The questions that will be asked on the online survey include demographic information (e.g. age, gender, ethnicity), satisfaction with caregiver support services, symptoms of stress (PSS-10) and depression (PHQ-9) they have experienced as a caregiver. At the end of the online survey, the participant will be presented with the Debrief Form which will include resources (e.g. links to relevant organizations and hotlines) that can provide additional information and support.

How much time will you spend on the study?
The study questionnaire will take approximately 30 minutes to complete. If at any point the participant does not wish to continue the study, they may exit out of the online survey.

How much will participation in the study cost?
Access to the online questionnaire requires a device that can connect to the internet. There is no cost to access or participate in this study.

Will you be paid or compensated for your participation?
Upon completion of the study questionnaire, participants will be presented with the Debrief Form. In the Debrief Form, the participants will be provided with resources that can provide additional information and support. Additionally, the participants will also be prompted to consider participation for a raffle to win one of four $25 gift cards.

What are the main benefits to participating?
By participating in the study, participants will be contributing to research that will allow society to obtain a better understanding of the perspective of caregivers of individuals diagnosed with dementia. Furthermore, participants will aid in research to investigate the psychological impact of caregiving. The results of this research may be used to create a psychological intervention for caregivers of dementia based on their needs. (e.g. group therapy).

What are the main risks if you participate and what is being done to minimize those risks?
By taking the online survey, Participants may undergo minimal physical risk (e.g. fatigue from taking the test and eye strain), minimal psychological distress (e.g. recounting experience of being a caregiver). These risks are minimized by limiting survey time and providing support resources upon completion. Additionally, participants may undergo minimal risk with loss of confidentiality as with any online engagement. This risk will be minimized by the investigators by ensuring that the participants will remain anonymous by removing any identifying information. Furthermore, Survey Monkey will be used to provide a secure data collection method which will minimize the risk of loss of confidentiality.
What information will be collected about you?
The survey will gather demographic information, caregiver experiences, satisfaction with support services, and mood data, including stress and depression levels. Participants can withdraw their data by contacting the primary researcher, Sheiva Nadooshan M.A. at sheiva.nadooshan@midwestern.edu.

What is being done to protect information collected about you?
The information obtained through the study questionnaire cannot be readily ascertained or directly linked to the participants. All responses will be collected on the Survey Monkey platform which is a secure data collection method. Only the PI, Rachel Piszczor, Psy.D. and Co-PI, Sheiva Nadooshan M.A. have access to the data on the Survey Monkey and SPSS account. Data accessed by computers and online accounts are password protected. Lastly, all records associated with the research will be kept for a period of time and then deleted as specified by the APA ethics code.

Will information being collected about you be shared with others?
Only the PI, Rachel Piszczor, Psy.D., and Co-PI, Sheiva Nadooshan M.A., will have access to the data collected on SPSS, excel spreadsheet, and the Survey Monkey account which will be password protected. The information collected will be kept for a period of time and then deleted as specified by the APA ethics code.

Who should you contact if you have questions?
If you have any questions about this study, please contact Dr. Rachel Piszczor, Psy.D via e-mail (rpiszczor@midwestern.edu). Participants can also contact, Sheiva Nadooshan M.A. via email (sheiva.nadooshan@midwestern.edu) or at 551-333-5233. If you have any questions regarding your rights as a research subject, please contact Dr. James Woods, Assistant Vice President of Research at (630) 515-6173.


By clicking "continue" you agree to take part in the research study and have read the information above. You understand that as a participant, that this survey is voluntary and that you can exit out of the survey at any time and/or contact the student researcher if you wish to withdraw your data from the study.

Thank you.

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