LBDA

Caregiver & Family Study – Understanding End of Life Issues in DLB


There is little or no data available about the experiences of people with dementia with Lewy bodies (DLB) and their families at end-of-life. This gap in knowledge makes it difficult for healthcare professionals to help prepare the person with DLB and their family when the disease enters the advanced stage. 
The aim of this study is to understand the experiences of people with dementia with Lewy bodies (DLB) and their families at the end-of-life, and to identify ways that end-of-life care can be improved.

What is this study about?

The aim of this study is to understand the common experiences of people with DLB and their families at the end-of-life, and to identify ways that end-of-life care can be improved.

What is involved?

This study consists of a 20-question online survey. Survey respondents will be asked if they are willing to participate in an optional 30-minute follow-up telephone interview.

Who can participate?

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

  • Was a caregiver, family member, or friend to a person with dementia with Lewy bodies (DLB) who passed away within the last 5 years
  • Is able to complete an English-language online survey.
  • Is able to communicate in English over the telephone (if participating in the optional interview).

How to Participate

Click here to take the survey.

Study Sponsor

University of Florida and the Lewy Body Dementia Association.

For more information

Contact:
Melissa J. Armstrong MD, MSc (principal investigator)
melissa.armstrong@neurology.ufl.edu