Early warning signs I blamed on stress that were actually early-onset Alzheimer’s in my forties

Rebecca Luna says she can’t remember the previous day ‘seven to eight times out of 10.’

She occasionally blacks out in the middle of conversations with friends: ‘It’s almost like I’m not there, it’s black, and it feels blank. It’s a complete nothingness.’

When she comes to, she doesn’t know what she’s just said or done. The mother-of -two has also forgotten to turn the stove off and unknowingly started her car. 

These lapses are all part of Luna’s rare diagnosis: early-onset Alzheimer’s disease.

Her symptoms began two years ago, and she started seeing psychiatrists for her memory ‘blips’, which Luna first chalked up to perimenopause or her ADHD. Luna also suffered from alcoholism for years – she is now 15 years sober – and feared her lapses could be repercussions of her addiction. 

It wasn’t until a neurologist administered a two-hour cognitive test, which she failed, and took detailed MRI scans, that she learned the truth nine months ago. 

The Canadian native has grappled with the knowledge that the neurodegenerative disease will rob her of time with her children and has had to explain to them that, given her diagnosis, the mother they know her as will likely begin to disappear within a few years. 

Early-onset Alzheimer’s is more progressive, with a shorter life expectancy of about eight years from diagnosis.

Rebecca Luna’s early-onset Alzheimer’s symptoms appeared about two years ago. She would black out mid-conversation, lose her keys only to find them in her car’s ignition, forget what she did the day before, and left to stove on at home for an hour before returning to find her kitchen full of smoke

Luna said: ‘It’s really hard to think about that stuff because I am in denial. So when my brain is like, let’s look at the facts, sometimes I look at my neurology documentation with all the scientific facts – they’re not just out of nowhere, they’re not perimenopause. 

‘I have to look at that stuff to make it real for myself because I just love gaslighting myself… It is a progressive illness. We’re catching it super early, which is amazing, but there is no cure.’  

Luna had noticed a growing number of troubling instances over around two years in which she couldn’t remember doing basic, everyday tasks.

One day, she returned to her car in the gym parking lot and realized she couldn’t find her keys. She checked around and underneath the car and even looked on the roof, thinking she had left them there like she’d done in the past with her coffee.

Then, she realized: the car was running, and the keys were in the ignition. She had already gotten in the car and turned it on but it didn’t register. 

‘My car was on that whole time. I had completely blanked out the process of getting in, putting the key in, and turning the ignition on,’ she told Yahoo!.

Another time, she began boiling an egg on the stove, forgot about it, and left home for about half hour. 

When she eventually realized what she had done, she ran home to find her kitchen filled with smoke.

Using Framingham Heart Study data through 2009, researchers estimated that at age 45, the lifetime risk of Alzheimer’s dementia was about 20 percent for women and 10 percnet for men, with slightly higher risks at age 65

‘So, it literally almost caught my house on fire,’ she said.

Luna’s psychiatrist administered several cognitive tests, which ask people to recall words, name objects, follow simple instructions, or draw shapes. Doctors also check for memory, language, and problem-solving skills.

She failed all of them. 

Nine months ago, when she went to a neurologist for specialized care to confirm what the tests had found, she underwent a more expansive series of tests assessing her memory, attention, language, reasoning, visual-spatial skills, and emotional health.

Each test in the neurological evaluation has its own scoring system based on what is normal for a person’s age beyond just looking at whether the patient scored high or low on a test. 

At the end, the doctor reviews all of the individual test scores to spot certain patterns, such as an usually low memory score with normal attention and language skills. 

This helps the doctor spot signs their patient is dealing with Alzheimer’s specifically, the type of dementia whose first symptom is memory problems. 

Luna said: ‘Then he looked at my MRIs, looked at other things noted by the psychiatrist, and he just walked in with pamphlets of early-onset Alzheimer’s.

‘There was no diagnosis at that time. This was his suspicion.’

Further testing, including her medial temporal atrophy (MTA) score, which is a diagnostic tool for dementia, led to a diagnosis of early-onset Alzheimer’s.

Early-onset Alzheimer’s affects a small subset of the population diagnosed with this memory-robbing form of dementia caused by shrinking brain tissue.

Just five percent of the nearly 7million Americans with the disease are diagnosed between the ages of 45 and 65, well before the average diagnosis age of 80.

Early-onset Alzheimer’s is not typical Alzheimer’s disease at a younger age. It often runs in families. In some cases, it’s passed down directly from parent to child, while in others, people may inherit a mix of genes that increase their risk.

The disease tends to progress faster in people with an early-onset diagnosis compared to those who develop it later in life.

Even after accounting for the general risks of aging, people with early-onset Alzheimer’s have a higher risk of dying compared to those with late-onset or typical Alzheimer’s. 

This causes a significant number of premature deaths in adults aged 40 to 64 caused by complications due to Alzheimer’s, like infections, seizures, and pneumonia caused by food or liquid enters the lungs instead of the esophagus. 

The wide variety of causes of death means quantifying the annual death toll linked to the condition is difficult to pin down. Still, about 120,000 people with Alzheimer’s, both typical and early-onset, died in 2022 (the most recent year for which data is available). 

In addition to administering lengthy cognitive tests, Luna’s doctor took scans of her brain to document the shrinkage that had occured until then. This is not Luna’s scan, but demonstrates what brain atrophy looks like 

While early-onset Alzheimer’s if often hereditary, Luna did not say whether she has a family history of the condition.  

Additionally, people with early-onset Alzheimer’s often go about 1.6 years longer before getting diagnosed than those with late-onset Alzheimer’s, likely because symptoms are missed or doctors take more time to evaluate younger patients.

Following her diagnosis, Luna’s family, including her daughter and mother, is in denial. 

She said: ‘About two months ago, I sent her [my mother] the [doctor’s] clinical notes where he’s put Alzheimer’s on it. And she lost it then because I think she wasn’t believing it until she saw it on a piece of paper.

‘It’s so weird. I make fun of it all the time because that’s just generally who I am. I like to keep things kind of light and funny. It’s important for me to make fun of myself, to keep the morale high for the people around me, but I also need it because it is so serious.

‘I could totally take this and just go on an isolation/depression bender, and I do not want to do that.’

Luna began a TikTok account where she updates her 29,000 followers about her symptoms, her daily life, and her tips for self-care.

The Alzheimer’s Association projects that the number of Americans aged 65 and older living with Alzheimer’s dementia will rise sharply from 6.7 million in 2023 to 12.7 million by 2050, driven largely by the aging baby boomer generation, who face a higher risk of the disease

She has found a community on the site and many helpful tips from people in the comments section enduring similar diagnoses or helping a loved one cope.

Some of the best she has heard and implemented is minimizing clutter in her home, making playlists of songs that bring her back to herself, and journaling during the day, ‘because what’s one of my new things is I shower and then two hours later I feel like I need to have a shower.’

She added: ‘If you are a loved one [of someone with Alzheimer’s], my suggestion is to meet them where they’re at.

‘What I’ve found really helpful with my partner is not to be questioned but reminded, and to just believe them. And give them a hug. Tell them you love them. Because really, if I’m being completely honest, what I need is a hug from my family.’