What is the study about?

The purpose of this study is to describe care needs that people might have if they have dementia.

Why are you doing this study?

Often in healthcare we assume that people have a spouse or partner or children nearby who can help out if someone has a dementia diagnosis and needs assistance. But we know that’s not the case for nearly 1 in 4 people. We want to learn more about how people in that situation think about their care needs. We also want to hear from caregivers who have provided that support to someone who wasn’t a close relative. We hope to be able to design programs to help people plan for the future and find support if they need it.

Who can be in the study?

Researchers at Emory University are conducting interviews with:

• Adults who have early dementia and don’t have a spouse or partner, or adult children living in the same state
• Adults who have been unpaid caregivers for someone with dementia who is not their spouse or parent

Caregiving can include:

• Helping with personal needs like shopping, cooking, or rides
• Helping to arrange medical appointments and care
• Being a health care proxy or decision maker

What will I be asked to do if I take part?

If you decide you would like to take part, you would be asked to meet with the researcher by phone for an interview lasting up to 60 minutes. The researcher will ask you questions about your experiences as someone with early dementia or as a caregiver. The interview will be audio recorded. The researcher will ask if it is OK to contact you again by phone or email about other questions in the future. It is OK for you to say no – there is no penalty for doing so. People who complete the interview will receive a $50 gift card.

What if I change my mind?

You may cancel your interview, leave the interview at any time, or inform the researcher after the interview that you do not want your data to be used in the study. There are no penalties or consequences for doing so. Once data from several interviews have been analysed together, about two weeks after the interview, it may be difficult to remove the ideas of an individual person, but the researcher will make every effort to do so if requested.

How can I get more information?

If you have questions about the study, contact Jane Lowers, PhD, Principal Investigator, at 678-561-6637, jane [dot] lowers [at] emory [dot] edu.

This study has been reviewed by an ethics committee to ensure the protection of research participants. If you have questions about your rights as a research participant, or if you have complaints about the research or an issue you would rather discuss with someone outside the research team, contact the Emory Institutional Review Board at 404-712-0720 or 877-503-9797 or irb [at] emory [dot] edu.