杏吧性世界

FAQ for Family & Residents

Study Information

Who is leading this study?

• Dr. Debra Dobbs, a professor at the School of Aging Studies, 杏吧性世界.

Where is this study being conducted?

• In 30 assisted living facilities, including the one where your resident being asked to participate resides.

Who are the eligible participants?

• Residents with dementia who are not currently receiving hospice care.
• The goal is to have 450 residents in the study.

Who is supporting and sponsoring this study?

• The National Institute on Aging, which is part of the National Institutes of Health.

What is the purpose of the study?

1. To understand family members鈥� perceptions of care for residents with dementia.
2. To help train assisted living community staff to have conversations about advance care planning.

Who can you contact with questions or concerns?

• For questions about the study, contact Dr. Debra Dobbs at 813-396-9177 or palliativecare@usf.edu.
• For questions about your rights as a participant, contact the USF IRB at (813) 974-5638 or RSCH-IRB@usf.edu.

Information for Family Members

Why are you being asked to participate?

• Because you are a legally authorized representative of a resident with dementia who lives in an assisted living community and does not currently receive hospice services.

Is participation mandatory?

• No, participation is voluntary.
• You can stop participating at any time without penalties or loss of benefits.
• The care your family member receives will not be affected by your decision to participate or not.

What would you have to do?

• Sign consents for the resident and yourself to be included in the study.
• Answer 2 surveys (6 months apart) about your involvement in and satisfaction of care the resident is receiving.
• Is there a cost to participate?
• No, there is no cost.

Are there any incentives for participating?

• Yes, if you complete both surveys, then you will receive a $30 Amazon gift card.

Information Pertaining to the Residents

Will the residents know they are in the study?

• Because the residents have dementia, only the legally authorized representative/family member can consent to be included in the study.
• However, if a family member consents for the study and the resident has mild dementia, then we are required to get their assent to be included in the study.
• If the residents do not assent, then they cannot be included in the study.

How might being in the study impact the resident?

• Other than the assent for residents with mild dementia, there is no involvement required of the residents.
• A (research study nurse) will visit the assisted living community and review information from the resident鈥檚 chart.