Play Helps Families and Caregivers See Both Sides of Alzheimer's Disease

Last Saturday, one family struggled to accept that their father had been diagnosed with Alzheimer's disease. This family is luckier than others, however. They are the fictional characters in "Forget Me Not," a play written by Garrett Davis to raise awareness about Alzheimer's disease and provide comfort and support for caregivers, particularly in underserved communities where health disparities exist. University of Kentucky's Sanders-Brown Center on Aging (SBCoA) brought the play to a full house at the Lyric Theatre in Lexington on Aug. 16. We saw the play at a conference in San Diego, and we were immediately drawn to it as a resource for community outreach," said Dr. Gregory Jicha, an associate professor at Sanders-Brown. "The play is not only an entertaining way to make more people aware of the disease, but also educates people about the need to take action -- and one way to do that is to participate in research." Davis wrote the play as a tribute to his grandmother, who died of Alzheimer's disease when he was in college, and to all the family members who cared for her. "She had Alzheimer's, and it was terrible watching her fade away. When we see our loved ones at their worst, we tend to push ourselves into seclusion, out of fear or worry or both, at exactly the time when we should quit hiding and actively seek help." "I wrote this play so that caregivers might recognize themselves in the characters onstage, and perhaps get ahead of the curve and develop a support network not just for their loved one, but also for themselves." Alzheimer's disease is incurable and irreversible, It is the most common cause of dementia in older adults, and more than 500.000 Americans die from AD each year. African Americans are usually diagnosed with the disease at a later stage, limiting the effectiveness of early intervention. Blacks are about two times more likely and Hispanics are about one and a half times more likely than their white counterparts to have Alzheimer's and other dementia. Of the estimated 5.4 million people living with the disease, two-thirds are women. Davis describes "Forget Me Not" as one leg of a three-legged stool. "There are three plays in the trilogy," he explains. "'Forget Me Not' is intended to raise awareness about Alzheimer's disease. 'Mama's Girls' is part two -- its focus is on caregiving for someone with Alzheimer's. And the third play -- 'A Woman's Gotta Do' -- addresses finances, which is an important but overlooked part of the disease." Davis felt particularly compelled to bring his message to the African American community, whose culture embraces the concept that caring for a sick loved one is a personal -- rather than a shared -- responsibility. "We need to understand that we can care for Grandma without losing our own identity or neglecting our own families," Davis says. Jicha stayed after the play for a Q&A session with attendees. There, he stressed repeatedly the need for participation in medical research, particularly among African Americans. "At Sanders-Brown alone there are many, many studies exploring treatments that may prevent disease, cure disease, or at a minimum slow down its progress," Jicha says. "But without volunteers -- both with the disease and without -- we can't get enough data to determine whether these treatments really work." "If people recognize these issues and how close we are to making tremendous strides in curing Alzheimer's, they should join the fight and make a difference."