The younger faces of Alzheimer's and other dementias

Do any of these scenarios sound familiar?

"Where did I put my keys?"

"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 are a public health priority, with more than 55 million affected worldwide. In the U.S. alone, approximately 6 million people live with Alzheimer's. With people living longer, the Alzheimer's Association expects that number to grow to 13 million by 2050.

While the majority fall into the 65-plus 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. For reasons still being researched, these diseases disproportionately affect Black Americans (twice as likely) and Latinos (1 1/2 times) more often than white people.

We 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.

When Jobe was 53, her husband noticed that 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 for sending her for a neuropsychological consult.

A battery of cognitive assessments, including a PET scan, revealed Jobe has posterior cortical atrophy, progressive degeneration of the brain's outer layer. This type of dementia most often affects those between 50 and 65.

The benefits of PET scans are many, including detecting emerging issues sooner than with the traditional imaging of either CT or an MRI. "You can visualize the burden in the brain," said John Lucas, a neuropsychologist and investigator at the Mayo Clinic Alzheimer's Disease Research Center in Jacksonville, Fla.

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, Ill.

Ream, a former machine operator, was used to dealing with 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 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 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.

Patients are often compared to 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."

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 (MCI). K.B.'s four 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 10-15% of people with MCI 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.

"As a former project manager, responsible for multimillion-dollar construction projects, the news hit me like a ton of bricks," K.B. recalled.

In K.B.'s case, 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 just over 50% of primary care physicians do not usually feel comfortable diagnosing MCI. 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, Wash.

As a regional admissions adviser, Gutierrez-Parker didn't expect to have to retire at 61 due to MCI.

"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 physician, the doctor initially cast off her worries as "old age." However, at Gutierrez-Parker's urging, she completed a series of cognitive assessments and was referred to a neurologist. That evaluation confirmed MCI.

"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.

Maintaining connections

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

Gutierrez-Parker is thankful that one of her daughters moved in with her to be a full-time caregiver. 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.

"My Alzheimer's diagnosis does not define me," responded Dale Rivard, 64, of East Grand Forks, Minn. "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, Wis. "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 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.

Unexpected joy in moving forward

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

Ream started a private Facebook 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. The site is now a haven for nearly 1,000 individuals either experiencing dementia or caring for a loved one.

Perched in his recliner, Ream leaned into the camera during our Zoom call and confidently told me, "Alzheimer's has never met Dan Ream."

Gutierrez-Parker, who moved into early-stage Alzheimer's soon after the initial MCI analysis, is pleased to report that the progression has since slowed down.

"I do everything I can to improve myself and keep my mind strong," she said.

Neuroplasticity, the capacity to change connections in the brain when gathering new information, seems to be working in her favor. Each day, Gutierrez-Park tends to outdoor gardening, puzzles or knitting.

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."

This article originally appeared on NextAvenue.org.

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 recommends that after ruling out underlying issues, you seek a neurological assessment.

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.

More information is available from the Alzheimer's Association.