When someone starts forgetting things, there's more than one possible answer.
By Steve Friess • September 17, 2020
For five years, my family believed my mother suffered from
what her neurologist called “pre-Alzheimer’s.” That meant, he told us, she was
very likely to eventually develop the disease based on symptoms she already
showed.
This made sense to us. As she entered her 70s, Mom was
forgetful, frequently lost her keys or her purse, often seemed disengaged in
conversations, and had become such a dangerous driver that the state of Florida
took away her license after totaling two cars in a two-year span.
The only person who didn’t believe it was Mom, which we
dismissed as pride and denial. Still, she dutifully went to the neurologist
regularly and took the Alzheimer’s-stalling medication Aricept that he
prescribed.
But at 75, she also has become an advanced bridge and
mahjongg player, easily memorizes new songs and choreography for her Sweet Adelines chorus and
often learns to master complex apps on her iPhone.
“I’m no different than other people my age,” she insisted
regularly. “Actually, I do better than most of them.”
She did, however, complain often about how much she disliked
her elderly, male neurologist, whom she felt spoke down to her. So I found her
a younger, female one recommended by a friend, flew to Florida, and took her for
the intake appointment.
“I’m not sure this is dementia,” is what Maria
Prego-Lopez—the new neurologist—told us last month after a lengthy conversation
and some tests. “I think you might have ADHD, actually.”
Attention
Deficit Hyperactivity Disorder? Isn’t that the label they put on
little boys who can’t sit still? Who ever heard of a 75-year-old with ADHD,
which is also often referred to interchangeably as ADD for Attention Deficit
Disorder?
The wrong diagnosis
“A lot of people just have not gotten the word, including a
lot of doctors, that ADHD in adults is real and very treatable in a lot of
people, but instead they diagnose it as something else,” says Thomas Brown, a
psychologist and former board member for the Attention
Deficit Disorder Association as well as Children and Adults with Attention-Deficit/Hyperactivity
Disorder, the two major non-profit groups in the space.
“Finding somebody who’s got the training to know what ADHD
looks like, and what it isn’t, is difficult,” he says.
“A lot of people just have not gotten the word, including a
lot of doctors, that ADHD in adults is real…” Thomas Brown, psychologist ADHD
specialist
Adults with ADHD often have trouble concentrating, paying
attention, getting started, and organizing themselves. They get easily
distracted, especially when a topic or task is not highly interesting to them.
Prego-Lopez says that could easily explain my mother’s high
functioning levels in her card games and chorus simultaneous to her difficulty
remembering or placing many other things. People with ADHD can also be
impulsive and self-medicate, struggle in relationships, and have problems
holding jobs.
Yet doctors rarely look for the syndrome in older people
and, instead, miscategorize and treat their struggles as dementia, sleep
disorders, depression or anxiety, experts say.
A rush to dementia
While misdiagnosis of specific dementia-related diseases is
common—some 18% of
Alzheimer’s diagnoses turn out to be inaccurate, according to
research by Eli Lilly—usually it’s because the person simply has another
dementia-related illness.
But ADHD experts say there’s a rush to suggest any older
person who is forgetful or inattentive has dementia when, in fact, they may
just have ADHD.
ADHD experts say
there’s a rush to suggest any older person who is forgetful or inattentive has
dementia when, in fact, they may have ADHD.
Kathleen Nadeau, founder and clinical director of The Chesapeake ADHD Center in the
northern suburbs of Washington D.C., says she sees adults who present as
depressed or struggling with sleep disorders for whom the actual root problem
is undiagnosed ADHD.
“The important thing to understand about ADHD is there’s no
single defining characteristic that is unique to people with ADHD,” Nadeau
says. “It’s a disorder that exists along a continuum. Everybody loses or
forgets things when they’re under a great deal of stress.”
So when does it turn into ADHD? Here’s
what Nadeau looks for: “Is it far enough along the continuum that most people
with your level of intelligence are functioning better or making better
decisions, have better control of their impulses, better control of their
emotional reactions, better control of their intentions?”
No meeting of minds
Among dementia experts, the idea of overlooking ADHD in
favor of a diagnosis of cognitive impairment or decline isn’t a topic of much
discussion.
Thad Colne, a neurologist in North Carolina, says he
understands how it could happen in the earliest stages but says that scans of
the brain over time show tell-tale signs of cognitive decline that wouldn’t
appear in people with ADHD.
“I can’t imagine a misdiagnosis like that could go on for
very long, but I’m not an expert in ADHD, so I guess it’s possible,” he says.
The available data suggests that 11 million American adults,
or 4.4.%, have ADHD.
Likewise, the spokesmen for both the Alzheimer’s Association
of America and the Dementia Society of America said they are too unfamiliar
with ADHD to discuss the issue of misdiagnosis.
Research has lagged along with awareness. The available data
suggests about 11 million American adults, or 4.4%, have ADHD, but that
commonly cited figure comes from just one 2006 study.
Nadeau and Brown agree the numbers are higher, especially
since the Centers for Disease Control believe about 11% of children have
ADHD and people don’t get “cured” so much as learn coping tactics that mitigate
the symptoms as they mature.
20 minutes
The most recent edition of the Diagnostic and
Statistical Manual of Mental Disorders, DSM-V, only provides guidance for
screening for ADHD in kids, furthering the impression among many health care
professionals that it’s not an issue for older people.
Brown, who runs ADHD seminars at the national meetings of
the American Psychological Association, says he routinely asks his students how
much ADHD training they received in medical school and residency. The answer:
About 20 minutes.
Treatment of older people is similar to the approach for
kids—medication and coaching for work-around tactics. Yet here again, some
doctors hesitate because stimulants such as Ritalin and Adderall could
exacerbate a patient’s heart or blood pressure conditions, issues that are of
less concern among children.
“The medication can help your brain become more focused,
more able to do things, more able to learn systems and patterns, but if you’ve
never had those skills all your life, you still need to learn them,” Nadeau
says.
The people she worries about most: “Older adults who live
alone and don’t take good care of themselves, don’t eat well, have irregular
sleeping patterns, and are socially isolated.”
The happy ending
In my mother’s case, the moment Prego-Lopez suggested ADHD
instead of dementia, it instantly made far more sense to me than the notion that
Mom is on the road to Alzheimer’s. In fact, the turning point at the
appointment came when the doctor asked me whether Mom had always been
forgetful, lost things, and been a terrifying motorist.
Yes, I replied, she had.
My mother was
relieved that someone had offered a possibility far less devastating than the
idea she was losing her mind.
That, Nadeau says, illustrates that the symptoms manifesting
and perhaps intensifying were merely a progression of a lifelong condition in a
woman who grew up decades before anyone knew to look for ADHD in children. It
may be presenting more acutely now because she is getting older, became a
widow, and found herself living alone for the first time in her adult life.
Nadeau says many adults with ADHD deny they have it, but my
mother was relieved that someone had offered a possibility far less devastating
than the idea that she was losing her mind.
“Your mother was smart to change neurologists and very
fortunate that she found one that realized that if she’s been this way all her
life, it can’t be dementia,” Nadeau says. “She sounds like she has been
adamantly defending herself and feeling that she’s been falsely accused. It must
be a great relief for her.”
Indeed, Mom went to a follow-up appointment this week at
which Prego-Lopez examined all of her previous brain scans as well as the ones
she had ordered.
She left me a triumphant voicemail: “We just came from the
doctor, the doctor said there’s no dementia, no Alzheimer’s, that the EEG was
perfect,” Mom crowed. “The only thing she said is that I may have ADD. So how
about that? Bye!”
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