Shannon Elder began participating in the Decatur Walk to End Alzheimer’s two years ago. Her father was diagnosed with Alzheimer’s disease in 2016. Since his passing in 2019, Shannon began to reflect upon what her experience with her father and his illness was like.
Shannon was her father’s primary caregiver throughout his illness. Overall, Shannon felt that she did not know enough about dementia and did not feel that she had access to enough education or resources about the topic.
That is, until she found her way to the Alzheimer’s Association.
Shannon took advantage of Alzheimer’s Association Support Groups for adult caregivers of parents living with dementia, as well as various educational programs about caregiving and Knowing the 10 Warning Signs of the disease.
“[Caregiving] seems like something you can do on your own, or that you won’t need much support or help, but I was wrong,” Shannon shared. She added that throughout her experience with her father, she was most struck by the toll that caregiving took on her own health, family and relationships.
Shannon got involved with several legislative efforts around caregiving and dementia in an effort to raise awareness. She has been writing e-mails to her local senators, sharing her story and informing them of the impact that dementia has had on her and her family. She believes that these personal stories shed light on how dementia impacts more than just the person with the illness–how it has a “ripple effect,” as she puts it. “This is a disease that it not hard just on the person it affects, it impacts everybody,” Shannon says.
For this reason, Shannon wants her senators to lobby for increased research efforts into dementia and finding a cure. She also believes there needs to be more access to dementia education and dementia care so that other families are able to understand what caregiving is and how to make the best decision for their families.
After Shannon’s father passed, two other family members were diagnosed with Alzheimer’s disease. She acted as caregivers for them, as well. Her Walk to End Alzheimer’s team is the “Alzheimer’s Warriors,” named to honor the members of her family who have been lost to this disease.
“They were the warriors,” Shannon added. “This walk is for them.”
Register for your local Walk to End Alzheimer’s at alzheimers-illinois.org/walk.
Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer