Book Helps Explain Alzheimer’s To Those With Down Syndrome
JACKSONVILLE, Fla. — A year earlier, drastic behavioral changes and memory loss had descended like a dark cloud over their son.
The diagnosis that finally came — early-onset Alzheimer’s disease — was devastating enough. But for Sherri and Lee Henderson, who founded an Orange Park nonprofit that works with people who have developmental disabilities, the grief was compounded. They could find no books, videos or other resources to help them explain the disease to their son, 29-year-old Trey, who has Down syndrome, in simple terms that he could understand.
“I couldn’t find anything to use … There was nothing to explain the process of the disease,” Sherri Henderson said. “I just got angry.”
Advertisement - Continue Reading Below
So she created her own resource. She wrote “Picture Memories: Understanding Dementia,” a short but compelling picture book. It describes how the disease slowly robs its victims of the “picture memories” their brains began taking when they were small, pictures of people, places and things.
The book has since been endorsed by local and national experts in the field, including the head of the National Down Syndrome Society, not only for those who have Alzheimer’s and developmental delays but for young relatives of others with the condition, as well as caregivers and adult family members.
“It will be an essential addition to my own bookshelf,” said Trey Henderson’s psychiatrist, Joseph Sarachene.
Ease The Anxiety
Trey Henderson was never the shy, wallflower type.
At Orange Park’s Ridgeview High School, he was elected Homecoming king and most spirited and took part in the drama program. He was the school mascot there and later the mascot’s sidekick at the University of North Florida. He loved karaoke and mastered Michael Jackson’s moonwalk and kick dance moves.
“He was a showman,” said his mother.
That he had Down syndrome was not an issue. As an adult, he lived independently, had a job and rode city buses on his own. But 1 1/2 years ago, his behavior started to change.
The young man who had been the nicest guy in the room was mean to some of his friends. The young man who had taken pride in his appearance stopped taking care of himself. He began having trouble remembering things, completing tasks. Some days his showman personality would be evident; other days he was quiet.
“It’s not our Trey,” said Sherri Henderson. “People don’t recognize him. His personality is not shining through.”
The diagnosis came in September. Early-onset Alzheimer’s occurs before age 65 and is the most common form of dementia, which causes loss of memory and other cognitive abilities. At least 50 percent of people with Down syndrome will develop Alzheimer’s in their lifetimes, according to the National Down Syndrome Society. They are more likely to get early-onset Alzheimer’s because of their shorter life expectancy, which is an average of 55 to 60 years, according to the society.
“I don’t want Alzheimer’s,” a frightened Trey Henderson told his mother. “I’m going to die.”
He had an elderly relative with Alzheimer’s who had passed away.
“I could see what was going on with her,” he told the Times-Union. “I was scared to have it.”
Slowly the disease took away his independence. He could no longer work, so he spends his days at Henderson Haven, his parents’ nonprofit, and helps out with the younger clients. He used to live with several roommates, but now lives with his brother. He is unable to ride buses or even his bike alone because he might not find his way home.
“He used to say (to his parents), ‘I’ll take care of you when you’re older,'” Sherri Henderson said. “He won’t.”
Trey Henderson said his mother’s book helped ease his anxiety.
“It helped me to understand. It explained it to me,” Trey Henderson said.
Linda R. Edwards, medical director at UF Health Jacksonville’s program for adults with intellectual and developmental disabilities, wrote the preface. She praised the book for its “simple but eloquent description of dementia.”
“Imagine trying to explain to a young adult with Down syndrome and intellectual disability the reason their memory is declining,” she said. “The young adult with dementia may not be able to share what they are thinking, what they fear, what they do or do not understand. … The phrase ‘picture memories’ will forever be on my mind when I am talking with patients and their loved ones about dementia, regardless of their age.”
The enhanced risk of Alzheimer’s for adults with Down syndrome “may bring feelings of anxiety and fear,” said Sara Hart Weir, president and CEO of the National Down Syndrome Society.
“This thoughtful book educates readers … through text and illustrations that can be easily understood,” she said. “Education empowers individuals, families and caregivers to understand the impact of an Alzheimer’s diagnosis and to process changes as they occur.”
Trey Henderson knows he was the inspiration for the book. He knows that the illustrations — by Albanian artist Ani Barmashi — were inspired by photos of him and his family.
“That’s pretty cool for me,” he said.
He also knows that his mother has shared the book with other families and medical professionals and that it is helping other people understand.
That, he said, is “really special.”
© 2018 The Florida Times-Union
Distributed by Tribune Content Agency, LLC
Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.