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.
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.
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.
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.
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.
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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How virtual reality helps caregivers understand challenges
by Considerable Staff
It’s nearly impossible for people without dementia to understand completely the frustrations and trials that come with memory loss. Sometimes even the most capable and trained healthcare professionals will unwillingly become impatient with people with dementia — but VR is here to help combat that.
The Virtual Dementia Tour was created by Second Wind Dreams, a nonprofit dedicated to changing the perception of aging through educational programs and by offering dream fulfillment.
People going on the Virtual Tour are given limiting devices like gloves, glasses, and headphones that simulate some of the physical difficulties that dementia presents like loss of peripheral vision and reduced motor skills. They’re then asked to complete tasks like folding towels and finding and putting on certain items of clothing — everyday necessities that are easy to take for granted, but often extremely difficult for those with dementia to accomplish.
“Virtual reality technology has the potential to give caregivers, medical students and others greater insight into what it’s like to have mild cognitive impairment (MCI), age-related vision and hearing loss, or to progress through the continuum of Alzheimer’s disease,” Keith Fargo, PhD, director of scientific programs & outreach at the Alzheimer’s Association told Considerable.
“By experiencing aspects of someone else’s journey, individuals may gain a better understanding of, and empathy for, older adults and their struggles with dementia. While more research is needed, technology like this may be useful in expanding awareness about what it is like to have Alzheimer’s disease and other dementias.”
The idea is that by attempting to accomplish tasks with the challenges that dementia patients face regularly, their caregivers will have a greater sense of empathy and understanding about what their patients regularly go through. That way, caregivers will be able to better communicate with their patients about their needs, pains, and struggles.