Not long ago, Richard Dupee, MD began working with the family of an elderly man who’d been diagnosed with Alzheimer’s. Though devastating in its effects, Alzheimer’s is a disease with a long windup—its symptoms can be quite mild at first, and it’s not uncommon for patients to survive for 15 to 20 years after the diagnosis. So the family was shocked when the man’s condition began to deteriorate rapidly.
“They couldn’t understand why he was getting worse so quickly,” says Dr. Dupee, who is chief of Geriatrics Service at Tufts Medical Center. “Then they got the devastating news that their father didn’t have Alzheimer’s at all.
”Additional testing revealed that the patient was actually suffering from a disorder called Lewy body, which is characterized by a stooped posture and slow thinking and responding, and which typically results in death much more quickly than Alzheimer’s.
The patient’s family was encountering the difficult and often bewildering reality about memory-based disorders: they can be complex to diagnose, challenging to manage, and fickle, like memories themselves.
It’s easy to mistake Lewy body for Alzheimer’s, for instance, because both diseases fall under the broad category of dementias. There are other types of dementias, too, and many patients suffer from a “mixed pathology,” meaning they have more than one form of dementia at the same time. And if all of that weren’t complicated enough, there are even patients who display dementia-like symptoms that aren’t actually related to dementia at all. “Dementia is a very broad umbrella,” Dr. Dupee explains, “and its associated cognitive impairment could be related to a number of different categories.”
The treating physician’s job is to figure out precisely which of those categories apply to a specific patient in order to provide the best care. Dementia is a neurodegenerative disease and there is no cure, but prescription drugs can prolong a patient’s self-sufficiency.
“These drugs that we use on all the dementias may not do too much for cognition,” Dr. Dupee says. “But they do help with daily living—the ability to stay home, to do some of the self-care, these medications can maintain that functioning for a significant amount of time.”
That’s important because dementia can take an enormous emotional toll on a patient’s family.
“Everybody associates dementia with a memory decline, but it’s not always just memory,” says Tinatin Chabrashvili, MD, a neurologist and director of the Dementia Clinic at Tufts Medical Center. She says dementia patients are prone to seemingly random behavioral issues, emotional outbursts, and fits of anger and agitation.
“It’s a problem the whole family is facing, including spouses, children and even grandchildren,” Chabrashvili explains. “Especially early on, before a definitive diagnosis has been made, they may not understand the sudden change in personality.”
The Dementia Clinic helps families and referring physicians diagnose dementias, including the specific ones that a patient may be suffering from. “If there is a significant change that cannot be explained by so-called ‘normal aging,’ it may be appropriate to refer,” Dr. Chabrashvili says. She explains that a person’s cognition—or thinking and reasoning ability—tends to continue to improve up to age 45 or 50, and to then remain stable up to age 65 or 70. A drop in cognitive level prior to that age range could be indicative of dementia.
Then again, a slip in memory or cognition can be perfectly normal for people in their older years. Thomas Laudate, PhD, a clinical neuropsychologist at Tufts Medical Center, says that when it comes to holding onto information and manipulating it in the short term, most of us will show a decline in later years.
“So don’t panic,” Dr. Laudate says. “There is a lot of stuff that we encounter that is normal—we’re not computers.”
So what kinds of behaviors can point to something serious? Dr. Laudate says someone who has a pattern of asking the same question over and over, without realizing the repetition, could be suffering from dementia, as could someone who, say, puts her shoes in the refrigerator, or who exhibits unusual spatial problems such as getting lost in a familiar area.
Even someone who displays these symptoms may not actually have dementia. Dr. Laudate points out that everything from a low Vitamin B-12 level to thyroid problems to depression can be the actual underlying issue. Figuring out exactly what’s going on with a given patient, then, can be like solving a puzzle.
“You have people with multiple concerns, and any one of them could be causing the cognition problem,” says Dr. Laudate. “It’s very hard for a primary care doctor to determine all of these factors in a 15 to 20 minute appointment—that’s why we’re here.”
After a patient is referred to him, Dr. Laudate does a series of tests to check memory, motor skills, language, and executive functioning, which includes problem solving, attention, and focus.
“We work to disambiguate all of the symptoms, to consider the medical, psychological, and functional factors that may be impacting someone’s thinking abilities,” he explains.
Sometimes the patient isn’t suffering from dementia at all. Other times, the testing can lead to an emotionally painful diagnosis. Dr. Dupee recalls the family who’d believed that their father had Alzheimer’s, only to learn that it was actually Lewy body dementia, which typically leads to death twice as quickly as Alzheimer’s.
“It was devastating for them to learn that he actually had Lewy body dementia,” Dr. Dupee says. “But what’s important is now they understand why his condition worsened so quickly, and [they] can plan based upon accurate information.”
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