PERSEVERE is a national
study funded by the National Institutes of Health, led by Dr. Jori Fleisher at Rush University Medical
Center in Chicago, IL, which is testing an educational program for family
caregivers of people with Parkinson’s Disease with cognitive impairment,
Parkinson’s Disease Dementia, Dementia with Lewy Bodies, or Lewy Body
Dementia. PERSEVERE will test whether a disease-specific, caregiver-centered
educational intervention improves caregiver knowledge, confidence, strain,
and health outcomes – and whether it helps people living with Parkinson’s
Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia, too.
Family caregivers will
receive weekly educational guidance through a 12-week curriculum with
resources and activities. All participation is virtual and scheduled when it
works for you. There are no in-person visits and the person with
Parkinson’s Disease, Dementia with Lewy Bodies, or Lewy Body Dementia does
not participate—just caregivers. Caregivers fill out online surveys and
assessments at baseline and every two weeks throughout their involvement in
the study, including a six-month follow-up period after the 12-week
curriculum.
WHAT: National NIH-funded study testing an educational program for family caregivers of people with Parkinson’s Disease Dementia or Lewy Body Dementia. Family caregivers will gain weekly educational guidance though a 12-week curriculum with short readings, resources, and activities. All participation is virtual; there are NO in-person visits. Caregivers fill out surveys and assessments at baseline, and every two weeks for nine months.
Who: Family caregivers of a loved one with Parkinson’s Disease Dementia, Parkinson’s Disease with visual hallucinations, or Lewy Body Dementia with experience as a caregiver. Mentor group: 3 years or more of caregiving experience, or whose loved one has passed. Caregiver group: 2 years or less of caregiving experience.
Length All Groups: Once a week for 12 weeks: one-hour period to engage in educational activities. For 12 weeks: Assessments and surveys every two weeks. Caregiver group: Completing Biweekly surveys for 12 weeks + 6 month follow up. Mentor group: Participate in mentor training and guide your mentee through 12 weeks of curated education and support materials with biweekly surveys. Optional support meetings with the study team and social worker to further support you.
Criteria:
- Your loved one with Parkinson’s Disease or Lewy Body Dementia must have cognitive symptoms or hallucinations.
- You must be living with or spending at least 10 hours/week caregiving now.
- You must live in the US, have a phone and internet, and be comfortable speaking and reading English.
- Gratitude If you qualify for the Caregiver group, you may receive up to $275 for completing assessments throughout the study. If you qualify for the Mentor group, you may receive up to $400 for completing mentor training, up to 3 mentoring relationships, and related surveys.
Email with questions or interest: persevere@rush.edu
Interested in learning
more?
Help spread the word!
Do you know someone who
might be interested? Please share this research opportunity with your
community. The PERSEVERE curriculum has been designed by and for
caregivers across the caregiving journey, including those who were past
caregivers.
Curious to see if you
are eligible? Complete the
pre-screening survey at https://redcap.link/PERSEVERE1