Caregiver Wellbeing Survey

• Principal Investigator: Bradford Dickerson, MD
• Sponsors: Philanthropic Funds
• Conditions Studied: Caregivers of patients with Frontotemporal Dementia or other related disorders

Caregivers of people with dementia are at a higher risk for mental health concerns than members of the general population. Some things that may increase the risk of mental health concerns include difficult patient symptoms and changes in relationship quality related to patient symptoms. Also, caregivers who have less knowledge about the brain disease that the patient has, and who feel less prepared for caregiving, may be at a higher risk of having mental health concerns.

The overall goal of this study is to survey caregivers of patients with Alzheimer’s Disease, Frontotemporal Disorders, Primary Progressive Aphasia, and Posterior Cortical Atrophy, about their experiences with caregiving. Survey questions collect information from caregivers on their level of burden, wellbeing, and mental health. This data will give us more information to identify areas of need and support, patterns, and areas of further exploration within the caregiving experience.  That information could possibly lead to future development of educational materials and tools as well as various supports for caregivers.

It will take a maximum of 5 years to complete this research study. During this time, if you choose to take part in this study, we will ask you to complete surveys every six months with questions about your caregiving experiences and wellbeing. These surveys are online, and paper versions are available upon request.

• Electronic consent
• Online surveys every 6 months about caregiver experience
• Each survey is approximately 45 minutes

If you are interested in learning more about this research study, please contact Inola Howe (iahowe@mgh.harvard.edu)