The personal experiences of people with LBD and their care partners/caregivers can provide important insights that can inform research. The ‘lived experience’ sheds light about how LBD affects individuals, which is critical for both research funders and scientists to understand.
What is this study about?
Investigators in LBDA’s Research Centers of Excellence program are surveying people with LBD and their family care partners to better understand their perspectives on what research topics are most important. Survey questions will also explore which LBD symptoms most affect their daily lives, and what treatments and services may be considered helpful.
Participants will take an online survey. Internet access and a computer (or tablet or smartphone) is required.
Who can participate?
An individual may be able to take part in the study if he/she is either:
• A person with a diagnosis of Lewy body dementia (either dementia with Lewy bodies or Parkinson’s disease dementia)
• A care partner or caregiver for a person with a diagnosis of Lewy body dementia
The Lewy Body Dementia Association
For more information