How long have you had a connection with the Memory and Aging Program?
My mother Catherine and I have been involved in the ENGAGE clinical study since 2015.
As a daughter to a study participant, what has the (study) experience been like for you and your family?
It’s been a great opportunity to spend more time together. When we have appointments at Butler, we make a day of it – spending time in Providence, which is where my mother grew up, going to lunch and of course, enjoying our time we spend with the wonderful staff at the hospital. My mother and I also are happy to be contributing to the study and hopefully, improving the lives of others by participating in advances in research.
Have there been any surprises for you about the clinical trial experience (or Alzheimer’s disease in general)?
Learning more about the disease has opened my eyes in regards to the early signs of Alzheimer’s. I look back and see ways in which my mother was changing, slowly, over the last ten years. At the time, those changes didn’t signal any concern. Now, I use that insight to improve her day-to-day life.
What advice would you give to families if a loved one wanted to participate in a clinical trial?
I always speak highly of the clinical trial, the doctors, and staff that are involved. And I always encourage anyone with a family member with Alzheimer’s to consider participating. In the grand scheme of life, the time required to participate is small, and the possible contributions to science and public health could be enormous. (Oh, and you get to eat at the cafeteria for free!)
What would you like people to know about Alzheimer’s as it pertains to your family life and your outlook on the future?
My view is positive – what is the alternative? I believe advances in treatment will be made in my lifetime. My mother is changing, that is evident. But in the meantime, I’m enjoying my mother every day, in whatever manner life presents itself.