LBDA Launches Neurodegenerative Disease Caregiver Study – Participants Needed
Caring for someone with dementia has been described as ‘the long goodbye’ and it differs considerably from providing care for someone with a medical condition who retains their cognitive abilities until the very end. But is there any difference in the experiences between caregivers of different neurodegenerative diseases?
LBDA’s newest research initiative explores the differences in how grief is experienced during the caregiving journey by caregivers for individuals with dementia with Lewy bodies, Alzheimer’s disease, Parkinson’s disease with and without dementia, and frontotemporal degeneration. In addition to learning about the experiences of grief, this survey will explore the well-being and quality of life for caregivers of individuals diagnosed with these neurodegenerative diseases.
Internet access is required to participate in the study. An estimated 500 caregivers (who are currently providing care) for each different disease being studied are needed.
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Name of Study: |
Caregiver Grief, Well-Being and Quality of Life in Neurodegenerative Diseases |
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Principle investigator(s): |
Dr. James Galvin, M.D., M.P.H., New York University |
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Agency of study |
Lewy Body Dementia Association |
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Purpose of Study: |
The purpose of this project is to better understand the impact of caregiving for individuals with different neurodegenerative diseases, including LBD, Parkinson’s, Alzheimer’s and frontotemporal degeneration, and to ultimately reduce caregivers’ subjective, emotional burden by improving their understanding of the grieving process during the course of the neurodegenerative illness. |
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Characteristics/requirements for recruiting participants: |
Current caregiver of a person diagnosed with Parkinson’s disease (without dementia), Alzheimer’s disease, Lewy body dementias (‘dementia with Lewy bodies’ or ‘Parkinson’s disease dementia’) or frontotemporal degeneration. |
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Procedures involved, including length of study: |
Participate in an online survey that takes approximately 30 minutes to complete. |
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Potential risks to participants: |
None |
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Human subjects review approval: |
Exemption provided by New York University |
LBDA would like to thank the following media sponsors for their promotional assistance of this research effort: Family Caregiver Alliance and Alzheimer’s Foundation of America. LBDA's appreciation also goes to the Parkinson's Disease Foundation for their promotional assistance.
To participate in the study, click here.
