The purpose of this study is to understand the treatment preferences of individuals with dementia with Lewy bodies (DLB) and their care partners. The researchers are seeking to understand the relative importance of symptoms for treatment, particularly with regard to how treating one kind of symptom may make another kind of symptom worse. The insights gained from this study will help guide the selection of outcome measures for future clinical trials in DLB.

What is this study about?

DLB affects many different aspects of life, and treating one symptom often results in worsening others. This study will provide valuable information to researchers regarding the preferences of the community and center the voices of people with DLB and their care partners in the drug development process.

What’s involved?

Volunteers will complete a one-time web-based survey, which is estimated to take approximately 45 minutes. For those who have difficulty with the web-based survey, there will be an option to complete the survey verbally by connecting virtually with a study team member.

Who can participate?

An individual may be able to take part in the study if he/she is:

• Diagnosed with DLB (including its early stages, such as mild cognitive impairment with Lewy bodies, also known as MCI-LB)
• A current or former informal care partner of an individual diagnosed with DLB (for purposes of this study, an “informal” care partner is someone with no formal training and who is not employed as a caregiver; typically, this will be a friend or family member)
• At least 18 years of age
• Proficient in the English language

An individual may NOT be appropriate for the study if he/she is:

• Living in full-time residential care
• Diagnosed with Parkinson’s disease, including Parkinson’s disease dementia (PDD)

Study Sites

This study takes place entirely online, and people may participate from anywhere. For more information and to complete the survey, please use this link: https://rb.gy/7nd8b9

If you have difficulty with the online survey, click the “help” button on any screen. A researcher will then contact you to complete a survey verbally over a video call.

Study Funder

Northern Ireland Department of Education

For more information

Email or call study team member Sinéad Donnelly with questions or interest.

[email protected]

Phone: +44 7742458376 (outside the U.S., international rates may apply)