Diagnosed with dementia in their 30s, 40s, and 50s? Here’s how some are coping with early-onset Alzheimer’s

“What did I walk into this room to get?”

“I’m sorry, your name is on the tip of my tongue…”

For many people over 40, experiencing moments of forgetfulness is not all that uncommon and, daresay, almost expected. Often, we blame these random occurrences on information overload, the effects of menopause, or dismiss it as part of the aging process. True, memory loss could result from any of those scenarios, but it may also signal a more serious underlying condition.

According to the World Health Organization, Alzheimer’s, dementias, and other cognitive impairments have been deemed a public health priority with more than 55 million affected world-wide. In the U.S. alone, approximately six million people currently live with Alzheimer’s, the most prevalent of the dementias. Growing exponentially with people living longer, the Alzheimer’s Association predicts that number to grow to 13 million by 2050.

While the majority fall into the 65+ age group, a growing number, about 10%, are experiencing young-onset Alzheimer’s (also known as early-onset), between the ages of 30 and 60. Additionally, for reasons still being researched, these diseases disproportionately affect African-Americans (twice as likely) and Latinos (1.5 times) more often than Caucasians.

To increase awareness about young-onset Alzheimer’s and other dementias, Next Avenue reached out to experts and individuals living with these illnesses. Here are some of their stories.

A meeting caused concern

“Things started taking me two to three times longer to do and it really hit me something was wrong when presenting at a meeting — I completely lost what I was supposed to say,” said Deb Jobe, 56, of St. Louis, Missouri.

When Jobe was 53 years old, her husband noticed she often forgot things. “I took care of our checkbook and missed paying bills here and there,” said Jobe. At the time, she worked for a global human capital management firm and was responsible for clients’ overall customer experience.

After that fateful meeting, Jobe decided it was time to see her primary care physician. She credits her doctor with not discounting her symptoms as menopause and sending her for a neuropsychological consult.

A battery of cognitive assessments, including a PET Scan (positron emission tomography), revealed Jobe has posterior cortical atrophy, progressive degeneration of the brain’s outer layer. This specific type of dementia most often affects those between the ages of 50 and 65.

“PET scans allow us to view where and how much accumulation of proteins there are in a less invasive way,” said John Lucas, a neuropsychologist and investigator at the Mayo Clinic Alzheimer’s Disease Research Center in Jacksonville, Florida.

The benefits of this type of scan are many, including detecting emerging issues sooner than with the traditional imaging of either CT (computerized tomography) or an MRI (magnetic resonance imaging). “You can visualize the burden in the brain,” Lucas added.

Language confusion

“I started a new job and the first night whenever the computer program popped up, everything looked like Chinese to me,” said Dan Ream, 50, of Taylorville, Illinois.

Ream, a former machine operator, was used to dealing with many numbers and was an excellent speller, so when he began forgetting things he thought he should know and looking up meanings of words, his first thought was, “I must be getting dumber.”

On Thanksgiving in 2020, at the age of 49, Ream experienced numbness on one side of his body. An ER visit determined he had suffered a Lacunar Stroke, which occurs in a deep area of the brain.

Further testing, including CT scans and an MRI, linked with previous results from concussions over the years, showed moderate cerebral atrophy. Ream was then diagnosed with young-onset Alzheimer’s and vascular dementia. 

When being evaluated, patients are often compared with other people with similar backgrounds, but providing results from an earlier examination can show how a brain has literally changed over time.

“Having this knowledge helps us sort through an appropriate summary and resulting treatment plan,” said Lucas. “Early detection and intervention enable [the patient] to put a safety net and compensatory strategies in place that help [them] maintain independence as long as possible.”

A diagnosis of mild cognitive impairment at 40

“Several years ago, on a walk to the park with my kids, I fell over and passed out,” said K.B., 45.

In 2014, at the age of 38, K.B. was diagnosed with chronic silent strokes after suffering multiple head injuries. And in early 2017, she was diagnosed with mild cognitive impairment. As a mother of four kids under 19, K.B.’s children don’t yet know the extent of their mom’s condition, and she asked to remain anonymous for this story.

The Alzheimer’s Association cites that between 10% and 15% of people with mild cognitive impairment go on to develop dementia. In July 2021, at a routine neurology appointment, K.B. learned she was one of these people. And then she proceeded to forget about the possibility until January 2022 when reading through her medical records.

“It seemed like a question rather than a statement at the time,” K.B. recalled. “As a former project manager, responsible for multimillion-dollar construction projects, the news hit me like a ton of bricks.”

In K.B.’s case, like many others, memory issues surfaced several years before her actual diagnosis. When she first brought these concerns to her doctor, they were dismissed as being anything other than mental health concerns, and she was referred to a psychiatrist instead.

A recent study by the Alzheimer’s Association discovered that while primary care physicians are committed to learning more about mild cognitive impairment due to Alzheimer’s disease, and see clear benefits of making a specific diagnosis, just over 50% do not usually feel comfortable diagnosing it. That’s why it’s important for patients to consider getting a second opinion.

Trusting your instincts and advocating for yourself

“I began forgetting words, appointments, and at one point, I didn’t know where I was,” said LuPita Gutierrez-Parker, 66, of Yakima, Washington.

As a regional admissions adviser, Gutierrez-Parker didn’t expect to have to retire at 61 due to mild cognitive impairment.

“I was having memory loss when it came to appointments with my students, words from passages just read, or what I was doing during meetings,” she said. “I just wasn’t myself and couldn’t attribute this to stress any longer.”

When Gutierrez-Parker first saw her doctor, the doctor initially cast off her worries as “old age.” However, at Gutierrez-Parker’s urging, she completed a series of cognitive assessments and, based on those results, was referred to a neurologist for additional testing. That evaluation confirmed mild cognitive impairment.

“He told me, ‘Get your affairs in order and bring someone back with you to see me in six months,’” she said. “I was in a daze.”

Beth Kallmyer, vice president of care and support for the Alzheimer’s Association, said “Younger and late-onset Alzheimer’s look the same, making it a complicated diagnosis. More often than not, you will see some form of short-term memory loss. For instance, simple things like putting a meal together or getting dressed become harder to complete.”

If you are experiencing any questionable signs or concerns about memory loss, discuss them with your physician sooner rather than later.

Read more: Diagnosed with dementia? It’s hard to know how fast you’ll decline, so start planning for what’s next

Maintaining connections to family and friends

Maintaining connections with family and friends is crucial for those living with dementia-related disorders, with research proving the ill effects of social isolation.

Guiterrez-Parker is thankful that one of her daughters moved in with her to be a full-time caregiver. K.B. now lives with her brother. The hard truth is that for many people who develop symptoms in their 40s and 50s, their closest loved ones may not believe them.

The Alzheimer’s Association recently asked several people living with early-stage Alzheimer’s and other dementia what they want others to know about living with the disease — here are just two of those responses:

“My Alzheimer’s diagnosis does not define me,” said Dale Rivard, 64, of East Grand Forks, Minnesota. “I love the same people and doing the same things I did before my diagnosis.”

“It’s upsetting to have others ask my wife how I am doing when I am sitting right there or nearby,” said Jerry Smith, 78, of Middleton, Wisconsin. “I want to be open and honest about my diagnosis. Talking around me only makes me feel more isolated and alone.”

The Alzheimer’s Association, among others, is great source of support, with local chapters in every state along with a 24/7 help line staffed by social workers and counselors.

Monica Moreno, the senior director of care and support for the Alzheimer’s Association, suggests that those going through this journey, along with their caregivers, learn as much as they can about the disease, what to expect as it progresses, and how to plan for the future.

“We know too many families who have said they wish they knew our association existed earlier,” she said.

See: ‘We think it’s cognitive engagement’—a study finds that delaying retirement may help ward off dementia

Finding unexpected joy in moving forward

Regular employment has ended for many living with young-onset dementia, and “work” looks different than a typical job.

Ream started a private Facebook AR:FB  support group dedicated to those with early-onset Alzheimer’s and other dementias to help come to terms with his illness, educate others, and encourage early testing for treatment options. With only a few members in March 2021, the site is now a haven for nearly 1,000 individuals either experiencing dementia themselves or caring for a loved one.

Perched in his recliner, Ream leaned into the camera during our Zoom ZM, -1.20% call and confidently told me, “Alzheimer’s has never met Dan Ream.”

Guiterrez-Parker, who moved into early-stage Alzheimer’s soon after the initial mild cognitive impairment analysis, is pleased to report that the progression has since slowed down.

When asked what she attributes this to, she said, “I do everything I can to improve myself and keep my mind strong.”

Neuroplasticity, the capacity to change connections in the brain when gathering new information, seems to be working in her favor. Each day, Guiterrez-Park tends to outdoor gardening, puzzles, or knits — new activities there was never time for before.

Additionally, Guiterrez-Parker advocates for other Latinos as a congressional ambassador to the Alzheimer’s Association in spreading awareness of this illness across her community. 

“I will go anywhere that allows me to put up a table before losing my ability,” she said.

Jobe, who said she could “rock a PowerPoint but never draw a stick figure,” has unearthed an artistic ability with the right side of her brain “awakening” and balancing itself against the damaging effects on the left.

“Out of nowhere, I wanted to color and found a coloring book and pencils, and it was so calming for me,” she explained. In addition to painting and being a grandma, Jobe serves as an early-stage adviser for the Alzheimer’s Association.

“I had my perception of what Alzheimer’s looked like, and it certainly wasn’t me,” said Jobe. “If we can dispel what Alzheimer’s looks like, share the many faces, and help people recognize symptoms as early as possible, they can have a higher quality of life for longer. I am a person still providing value — don’t put me in a box yet.”

Read: How exercise can help prevent dementia

Early symptoms of Alzheimer’s and other dementias

It is reassuring to know that not all memory loss symptoms end in dementia and may stem from stress, depression, anxiety, lack of sleep or other treatable medical conditions such as a urinary tract infection. Neuropsychologist John Lucas, quoted above, recommends that after ruling out underlying issues, you seek a neurological assessment if for no other reason than to have a baseline available for future reference.

Here are several common symptoms to watch for:

• Often unable to recall recently learned information (either noticed by you or a loved one)
• Routinely misplacing or losing items
• Confusion about your current location or where you are headed
• Finding the right words or “losing” what you were saying in conversations

Learn more: Dementia and Alzheimer’s disease: How to spot — and prevent — them

More information is available from the Alzheimer’s Association.

Sheryl Stillman is a former retail executive turned freelance writer and change management consultant. She enjoys writing on a variety of topics including aging, technology and solo travel. Learn more at Sherylonline.com.