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Rev. Dr. Cynthia Huling Hummel: “I’m an Alzheimer’s Clinical Trials Participant— Here’s How I Think They Need to Change”
April 18 @ 10:00 am - 10:30 am PDT
Free
On Thursday, April 18th at 10 a.m. PT/1 p.m. ET, author, artist, and Alzheimer’s advocate Rev. Dr. Cynthia Huling Hummel joins Being Patient Live Talks to discuss her journey from diagnosis of amnesiac cognitive impairment (aMCI) caused by Alzheimer’s disease to participating in research and working in advocacy. She’ll also be speaking about a proposed study participant’s bill of rights, of which she was a collaborator on.
Hummel first noticed symptoms of cognitive decline at 49 years old, and was diagnosed with aMCI due to Alzheimer’s after seeking a diagnosis for eight years. Leaving full-time ministry in 2011, she now focuses on participating in research and advocating for people living with dementia. She currently serves on the National Advisory Council on Aging, National Academy of Sciences (NASEM), Alzheimer’s Clinical Trials Consortium (ACTC), Dementia Action Alliance (DAA), and NIH/ NIA Advisory Group on Risk Evidence Education for Dementia (AGREED).
She is also an author and an artist, with her book UnMasking Alzheimer’s: The Memories Behind the Masks featuring photography of several masks she’s made and her reflections on living well with Alzheimer’s disease.
RSVP to her live talk to learn about her experience with diagnosis, research, advocacy, and living well with Alzheimer’s.
It concerns me greatly that caregivers are 2nd, the patient often times outlives the caregiver.. our society is so backwards. A caregiver is told to take care of themselves. I don’t think it happens that way< in my case I thought I would have a nervous breakdown. I never never want to do this again
I am ill myself and I now have grief to deal with. I am not angry, etc, just stuck.
Hi Ruth, thank you for being here and sharing your thoughts with us. Caregiver burnout is very real! Here’s on ways to avoid or cope with burnout with science-backed guidance from one of our caregiving experts (and role models), Teepa Snow: https://www.beingpatient.com/how-to-avoid-burnout-dementia-caregiving. Also lots of reporting on our site about resources for caregivers, asking for help, and self-care — https://www.beingpatient.com/caregiver-guilt-self-care. Rooting for you.
Recording of this please? Thank you so much!
“I’m an Alzheimer’s Clinical Trials Participant— Here’s How I Think They Need to Change”
Hi Lorraine, here’s the link for the full Live Talk! https://www.youtube.com/watch?v=CotC9R4SFX0