Project Description
Lewy Body D
ementia (LBD; the current term that encompasses Dementia with Lewy Bodies and Parkinson’s Disease with Dementia) is the second most common cause of dementia after Alzheimer’s Disease, accounting for 4% to 15% of dementia cases. Family members are the mainstay of care for individuals who are experiencing LBD.
We know less about this disease than other forms of dementia. And there has been even less attention to the individuals who provide care for loved ones experiencing LBD. Caregivers for individuals experiencing LBD encounter distinct challenges stemming from their family member’s: a) cognitive symptoms similar to Alzheimer’s Disease, b) motor symptoms of Parkinson’s Disease, and c) additional symptoms of LBD such as fluctuations in cognition, hallucinations, delusions and sleep disturbances (including acting out dreams).
This study will enhance the well-being of family caregivers for older adults experiencing LBD by gathering information about caregiving tasks, caregiver stress, and caregivers’ psychological and physical reactions to that stress throughout the day. This will allow us to develop interventions and programs tailored to the unique needs of caregivers for older adults experiencing Lewy Body Dementia.
Information For Potential Participants
You may be eligible to participate if you are currently:
- An unpaid caregiver living with a family member who is experiencing Lewy Body Dementia
- The primary person who cares for that individual
This study consists of:
Eligibility Questions (approximately 10 minutes)
- After you complete the form from this link, we will contact you to complete a brief set of questions by phone to determine with you are eligible to participate. We are grateful for your time either way.
Baseline Interview (approximately 60 to 90 minutes)
- Caregivers will receive a thorough explanation of the study procedures and provide informed consent if they choose to participate
- A trained interviewer who is sensitive to the issues caregivers face will conduct the survey
- This interview will occur at a time of your convenience and will accommodate work schedules or other demands
Daily Life Assessment Over 4 Days
- Caregiver completes a 5-minute brief survey every 3 hours (5 X a day) on a study-provided smart phone
- The smart phone records sound in the environment for 30 seconds every 6 minutes. Participants have the opportunity to set up a schedule for when they don’t wish to be recorded (such as during work hours) and turn it off at any time for privacy.
- Caregiver and the person experiencing Lewy Body Dementia both wear fitness trackers (a FitBit) to assess heart rate, physical activity, and sleep.
Benefits of taking part in this study
You will help improve an understanding of caregivers’ daily activities and their overall wellbeing. This information is vital to develop interventions that can improvide the experiences of caregivers and the people experiencing Lewy Body Dementia whom they support.
Participation in the study is voluntary
The information collected is kept confidential and you can stop participation at any time.
You are paid for taking part
Caregivers will receive $75 in gift cards after completing the baseline Interview. Caregivers will receive $25 each day for the 4 days of data collection. Thus, upon successful completion of the study, participants will receive a total of $175 in gift cards.
The person experiencing Lewy Body Dementia will receive $10 a day in gift cards for wearing the Fitbit for 4 days, $40 total.
All identifying information of participants will be removed from any results reported. Study participant identities will never be released.
Project Information
This study is funded by the National Institute on Aging.
The project director is Karen Fingerman, PhD
Interested caregivers can sign up to determine their eligibility to participate using this link
Please contact us at caregivers@austin.utexas.edu or call 512-471-0618 for queries about participation