Social Networks in Alzheimer's Disease Study FAQs

The purpose of this study is to better understand how social networks directly affect the aging process of older adults, and their risk for dementia. Individuals with and without memory changes are invited to participate and their data will be compared. We are also interested in understanding how relationship characteristics are associated with the wellbeing and brain changes of caregivers and their loved ones with dementia.

Eligible participants are:

1. Over the age of 50
2. Meet a minimum cognitive assessment score (will be assessed by our team)
3. Live within 100 miles of Indianapolis

Participation in this study involves face-to-face survey administered by a trained interviewer. This interview will take place in your personal residence. If you prefer, the interview may be completed in a different location, such as the IADRC in Goodman Hall.

During the interview, you will be asked questions about the social activities and relationships of the study subject. You will also be asked about the important people in your life and characteristics of your relationships. Additionally, the survey will include questions about general well-being, lifestyle, and other related characteristics of the social environment you and the study subject live in. You may ask to stop the interview at any time, and you may refuse any questions you do not want to answer.

For most of the interview, a member of our research team will ask you questions directly and enter your responses on a computer or tablet. At times, you may be asked to complete tasks using the touch screen on a computer or tablet to facilitate data collection. However, the interviewer will be available to guide you and can perform the tasks at your direction, if preferred.

This is a multi-year study and the 90-180 minute interview will be completed each year. You will be compensated every year you are involved in the study. If you become fatigued, however, the interview can be split into multiple sessions on different days.

There will be an annual visit for SNAD data collection roughly the same time of year for the duration of the study. The same interview will be conducted every year to track potential changes.

Minor risks are associated with taking part in this research study. First, although we take precautions to avoid loss of confidentiality, this is always a potential risk of participating in scientific research. Second, you may experience mental fatigue associated with answering a large number of questions, some of which may be cognitively complex. Third, you may experience anxiety or discomfort when answering questions about sensitive or painful topics. If you become fatigued or anxious, you may stop participating at any time. You are also free to refuse to answer any questions in the interview.

You can contact either the Indiana Alzheimer’s Disease Research Center (IARDC), Caprice Elliott (Research Participant Recruitment Coordinator), or our research team directly.

For questions about the study, please call the Study Director, Hope Panik at 317-962-6414 or via email at hsheean@iu.edu.

Yes. Participants will be compensated based on their level of involvement.

There are no direct benefits. The information gained from the project will contribute to our understanding of how to prevent and treat adult cognitive disorders, including Alzheimer’s disease.

Please see the “For Collaborators” section on how to contact our research team.

Please ask! You can reach our study team at hmfranci@iu.edu.