Lewy body dementia (LBD; including both dementia with Lewy bodies and Parkinson’s disease dementia) is the second most common form of dementia caused by brain degeneration, accounting for 4% to 15% of dementia cases. Caregivers for individuals experiencing LBD encounter distinct challenges stemming from their family member’s: a) cognitive symptoms, b) motor symptoms, and c) additional symptoms of LBD such as fluctuations in cognition, hallucinations, delusions and sleep disturbances (including acting out dreams).

What is this study about?

This study aims to enhance the well-being of family caregivers for people experiencing LBD by gathering information about caregiving tasks, caregiver stress, and caregivers’ psychological and physical reactions to that stress throughout the day. This data will allow researchers to develop interventions and programs tailored to the unique needs of caregivers for people experiencing Lewy body dementia.

What’s involved?

Caregivers will be asked to participate in a baseline interview which lasts approximately 60 to 90 minutes. The caregiver will then to be asked to complete a 5-minute survey every 3 hours (5 x a day) on a study-provided smart phone for a period of 4 days.

The caregiver and the person experiencing Lewy body dementia will be asked to wear wrist-worn fitness trackers (a FitBit) to assess heart rate, physical activity, and sleep during study participation.

Who can participate?

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

• An unpaid caregiver living with a family member who is experiencing Lewy body dementia
• The primary person who cares for that individual

Study Funder/Sponsor

The study is funded by the National Institute on Aging (NIA), an institute within the National Institutes of Health (NIH)

For more information, please email [email protected], call Maya Brown @ 512-471-0618, or indicate your interest in hearing from the study team using the following link: Lewy body dementia Caregiver Study