Imagine being 17 years old and noticing that your memory is deteriorating. You are unable to concentrate in high school, and your short-term memory seems to be virtually nonexistent. Then, at 19, wondering what is going on, you are diagnosed with Alzheimer’s disease. This happened recently to a young man in China, who is now the youngest person in the world with Alzheimer’s disease and the subject of a recent case study published in the Journal of Alzheimer’s Disease.
Most Alzheimer’s patients first exhibit symptoms of the illness when they are in their 60s. However, there have been cases of patients in their 20s or 30s, and now even younger, who were diagnosed with what is often referred to as early-onset or younger-onset Alzheimer’s. The early-onset instances, including people under the age of 65, are not common and account for only about 10 percent of all cases diagnosed.
How Do They Know It’s Alzheimer’s?
Alzheimer’s can occur sporadically due to heredity, aging, the environment, or pathogenic gene mutations.
According to researchers, the younger a person is at the time of diagnosis, the more likely it is due to an inherited defective gene. So, when researchers from the Capital Medical University in Beijing saw the patient described above, they dug deep into the teen’s medical and family history and conducted a series of tests to learn more about his illness. They ruled out other common causes of cognitive impairment in young people, such as concussion, infection, inflammation, intoxication, trauma, abnormal metabolism, and congenital abnormalities because the patient had no history of head injuries, psychiatric, or psychological disorders, or diseases associated with memory loss. The teen undertook MRI and CT scans, blood and urine analysis, cerebrospinal fluid (CSF) analysis, a tau tracer to look for tau tangles, and several neuropsychological tests for memory, mental state, anxiety, dementia, and depression.
His MRI revealed the loss of nerve cells and the connections that enable them to communicate in the brain’s tissues and his CSF showed abnormal tau buildup, a hallmark of Alzheimer’s disease. Also, he performed worse than average on the World Health Organization-University of California, Los Angeles Auditory Verbal Learning Test, indicating a significant memory impairment.
Before this recent diagnosis in China, the youngest Alzheimer’s patient was 21 years old. This patient had the PSEN1 gene mutation, which causes proteins to accumulate in the brain, generating toxic plaque clumps, which is also a typical hallmark of Alzheimer’s disease.
The researchers did not specify what kind of treatment or assistance their young patient will receive, but they stated that they intend to follow up with him to better understand the disease.
Other Younger-Onset Instances of Alzheimer’s and What Happened to the Patients
The following are several other examples of patients with early-onset Alzheimer’s, what happened to them, and what researchers may have learned from them.
Mike Henley, Diagnosed at 36
Mike Henley was a graduate of St. John’s University. He was married and had two children in the early 1990s. In the late ’90s, Henley began having severe memory problems, getting agitated, and having outbursts at the slightest provocation. Soon after, his physical health deteriorated, leaving him unable to move or speak.
When Mike Henley was diagnosed with young-onset Alzheimer’s in 2001, the doctors estimated that he would only live for another five to seven years. Mike managed to beat this prediction but still succumbed to complications of the illness in 2012.
Lorinda Klaric, Diagnosed at 32
Lorinda Klaric was a mother of three when she was diagnosed with Alzheimer’s disease at the young age of 32. She noticed the symptoms a month or two after giving birth to her third daughter.
Lorinda lost many of her family members to the disease, including her cousin, aunt, mother, and grandmother. Her mother was just 33 years old when she succumbed to the illness. With this strong gene running in the family, Lorinda feared for the worst when she started forgetting things. Lorinda died in 2013, at the age of 36.
Knowing what awaited her and fearing for her daughters’ future, Lorinda volunteered for multiple Alzheimer’s studies. One study discovered that testosterone-based drugs can be an effective treatment for Alzheimer’s patients.
Daniel Bradbury, Diagnosed at 30
Daniel Bradbury lost his job as an aerospace engineer due to poor performance at work. He underwent several routine medical checkups at his GP to rule out tiredness or infections. A series of blood tests revealed the presence of the uncommon PSEN1 gene mutation. There are only about 600 other known cases of the PSEN1 gene mutation worldwide.
Daniel Bradbury inherited the dementia-carrying gene from his father who died at 36, 25 years before Daniel’s diagnosis. Patients that inherit the PSEN1 gene mutation tend to die at around the same age as their parents.
Two years after the diagnosis, Daniel struggled to remember any recent conversations. He hardly had the energy to pick up his kids from school or even play with them at home. He died in 2021, four years after the diagnosis.
Ken Dodson, Diagnosed at 29
Ken Dodson was diagnosed with early-onset Alzheimer’s a week before his 30th birthday. He was a newlywed, had just finished building their new home, and had three young kids. At first, Ken thought that the doctor was joking. He even requested additional CT and PET scans before accepting the diagnosis.
Ken Dodson lost his job working as a supervisor at Michigan Steel Company shortly after being diagnosed with early-onset Alzheimer’s. Likewise, his wife had to quit her job and spend more time taking care of him. The family ended up losing their only sources of income and health insurance that they desperately needed.
Ken is now 37. His family copes by maintaining a sense of humor when caring for Ken. They also share their challenges on various platforms including YouTube, as a way to encourage other families caring for a loved one with Alzheimer’s.
Jordan Adams, Diagnosed at 24
Jordan Adams is one of the youngest people ever to be diagnosed with young-onset Alzheimer’s. Moreover, he was diagnosed with Parkinson’s disease alongside frontotemporal dementia during a routine medical checkup. The progressive brain disorders are aggressive, even though Jordan has yet to display any symptoms, and he is now 27.
Jordan Adams inherited the rare gene mutation responsible for young-onset Alzheimer’s from his mother, Gerri. For years, Jordan watched his mom and aunt fight and later succumb to the illness at young ages.
Jordan is one of 14 participants on a British reality show “The Restaurant that Makes Mistakes.” The show features a restaurant run by people living with some form of dementia. It aims to encourage more people to continue working after getting their Alzheimer’s diagnosis.
Because of this gene that runs so strongly in his family, Jordan plans to have his sperm screened before starting a family with his partner, Lucy.
What You Need to Know About Early-Onset Alzheimer’s Disease
- It is rare: Approximately 250,000 of the 5.7 million people in the United States diagnosed with Alzheimer’s experience are early-onset. Genetic factors play the most significant role in someone developing Alzheimer’s before age 65. Since diseases like Alzheimer’s and other dementias tend to run in families, genetic testing is available to see if you are a carrier of certain genes.
- Diagnosis: The diagnosis of early-onset Alzheimer’s remains a clinical one. In the cases with known genetic mutations, pre-symptomatic identification of individuals at risk is possible. Children of individuals who carry the mutation are able to receive genetic testing when they reach 18 years of age.
- Progression: Early-onset Alzheimer’s has a more aggressive disease course in that early-onset Alzheimer’s disease tends to progress much faster than its traditional counterpart which strikes people over age 65. The average life expectancy for an individual diagnosed with traditional Alzheimer’s is between 8-12 years.
- Symptoms: Many people with early-onset Alzheimer’s don’t have significant memory loss initially, and their disease progression does not begin with symptoms of forgetfulness. Some of these individuals start with visual symptoms, such as tunnel vision, impaired depth perception, or inability to recognize faces. They also experience impaired speech/difficulty coming up with words in conversation. To learn more about the symptoms of early-onset Alzheimer’s, you can read more in this helpful article from Johns Hopkins Medicine.
- Often misdiagnosed: The unusual symptoms present one of the biggest challenges in the diagnostic process. Often, individuals with the beginning stages of the disease are misdiagnosed and labeled as having a psychiatric disease, ultimately resulting in them not receiving the care and education they need.
If You Have Early-Onset Alzheimer’s Disease
A diagnosis of younger-onset Alzheimer’s is obviously devastating for the individual and their family. You will face unique challenges when it comes to family, work, finances, and future care. The Alzheimer’s Association offers an excellent resource for what to do if you have been diagnosed with early-onset Alzheimer’s disease or if you’re a caregiver for someone who has.
Do You or a Loved One Have Dementia? — The Time to Plan Is Now!
Persons with Alzheimer’s and other forms of dementia and their families face special legal and financial needs; if dementia affects you or a loved one, please reach out reach out to make an appointment:
Northern Virginia Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
Annapolis Elder Law: 410-216-0703
District of Columbia Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
