Early-onset Alzheimer’s is a devastating form of dementia affecting adults under the age of 65. The condition accounts for nearly 5% of Alzheimer’s disease cases and can wreak havoc on families, emotionally and financially.
Learn more about early-onset Alzheimer’s and one family’s struggle with caring for two generations of Alzheimer’s under the same roof.
Devastating Effects of Early-Onset Alzheimer’s
Early-onset Alzheimer’s is a form of Alzheimer’s disease that strikes before the age of 65, often occurring between the age of 40-50 years old. The Alzheimer’s Association estimates that 200,000 of the 5.5 million Americans living with the disease are early-onset, developed before the age of 65. Because early-onset Alzheimer’s is rare and medical providers do not usually consider the disease in younger people, getting an accurate diagnosis can be difficult and symptoms are often attributed to mid-life medical conditions like stress.
Researchers do not know what causes the condition, but in a few hundred families across the globe, scientists believe they have pinpointed rare genes that cause the disease. Professor of neurology at University of Pittsburgh Dr. Oscar Lopez says that, “in the majority, we don’t know why it starts at that age.”
Alzheimer’s and related forms of dementia always bring devastation, but when the condition strikes earlier in life, it can lead to unique issues if the person diagnosed is still not financially ready for retirement, paying off a mortgage or is working. Senior director of care and support at the Alzheimer’s Association, Monica Moreno, says:
“If the person is the primary income for the family, it’s going to have a huge impact on that family. Besides, that person may have been the one carrying the health care plan. They may have children going off to college.”
One Family Copes with Two Generations of Alzheimer’s
One family knows the challenges of early-onset Alzheimer’s all too well. Jeff Borghoff was diagnosed with the condition at the age of 51 after experiencing neurological symptoms, including difficulty concentrating and multitasking. He says:
“We went for a year-and-a-half, in and out of hospitals, and nobody went down the path to Alzheimer’s. I was too young.”
Jeff’s wife Kim has become the sole provider of the family, working three jobs to keep up with household bills. She is also Jeff’s caregiver, along with her mother-in-law. Jeff’s parents moved in with them following the diagnosis, however, Jeff’s father, 86, is also living with Alzheimer’s. Kim says, “Prior to them moving in, I was a nervous wreck when he was home alone. Now, there’s always someone with him. My mother-in-law is very good to both of them, so while I’m at work, I don’t have to worry.” The family’s three children are also at home and join in caregiving duties.
While the family support has made day to day logistics easier, they say there the disease packs a profound emotional impact, especially when it comes to watching their loved ones change. Kim says:
“Every word out of his mouth was funny. We used to talk a lot. We had an awesome marriage. Every now and then I see the funniness come out and I say ‘There he is!’ But that’s becoming more and more infrequent. I feel like he’s just fading away.”
The family has a glimmer of hope as Jeff is currently participating in a clinical trial to test a new Alzheimer’s medication. The drug is in the last phase of testing and has shown promising results in early studies. He says, “If this drug works and I have to live with the way my brain is now, we’ll be happy for that.”
Do you have any personal experience caring for two generations of Alzheimer’s or dementia? We’d like to hear more about your experiences and stories in the comments below.