Research rooted in family tree
For Angela Jefferson, PhD, who heads the Vanderbilt Memory and Alzheimer’s Center (VMAC), Alzheimer’s disease is both an academic and personal passion.
“I’ve dedicated my career to fighting Alzheimer’s disease, to finding effective prevention and therapies, but this fight is also very personal. Both of my grandmothers were affected,” said Jefferson, who joined the Vanderbilt faculty in 2012.
Her maternal grandmother became symptomatic when Jefferson was 13, and her paternal grandmother started exhibiting memory loss signs when Jefferson was on the faculty at Boston University School of Medicine. Jefferson remembers the first sign of trouble for both grandmothers was linked to gift packages — one grandmother lost some gifts at a family birthday party and the other mislabeled several Christmas packages.
She watched as both sides of her family struggled to make decisions for her grandmothers — taking one’s car away; determining it was no longer safe for another to live alone; one side of the family working through how to care for the grandmother at home.
“I saw the toll it takes on families, especially when family members do not see eye to eye about medical and financial decisions. It creates a lot of stress,” she said.
Jefferson said her father’s family “bent over backwards” to make sure her paternal grandmother could stay at home. Those family members are part of the more than 16 million Americans who provide unpaid care for loved ones with Alzheimer’s disease and dementia, according to the Centers for Disease Control and Prevention.
“In the initial years, my uncle spent every night with her. He would leave his wife and go next door to his mom’s house, spend the night, then go back home the next morning,” she said. “Later they organized family and friends to pitch in as ‘granny sitters’ to keep her company and help her with tasks around the house.”
Jefferson and her brother have already had a discussion with both their parents. Her father wants to grow old at home. Her mother prefers assisted living if needed.
“Some people worry about being a burden and have a plan for assisted living. Some people make it very clear they want to stay at home. I think one of the most important things a family can do is talk about what mom or dad wants to do — to have a plan so there’s no second guessing or doubt.”
Denial is common among family members who notice cognitive differences in a loved one, so it’s important when there are signs of dementia that the loved one is taken for an evaluation as soon as possible.
She offers this advice to those newly diagnosed with Alzheimer’s disease or other forms of dementia: “Travel. Visit friends and family. Prioritize the things you enjoy now.”