When Antonio’s behavior started to undergo some disturbing changes, he and his wife, Victoria, started visiting doctors. When he could no longer work they tried to qualify for disability payments. “The pension board thought Tony was malingering, and refused him his benefits,” Victoria says. But Antonio, a classical musician, professor, and composer, set off alarms among family members one sunny day when he insisted on going inside because he thought it was dark out.
He developed a stutter, became depressed , withdrew socially, and had trouble planning lessons. “Antonio is an entertainer and teacher. He’s a people person. I really couldn’t figure who this person was anymore,” said Victoria.
Neurologist Stephen Strittmatter, M.D. , director of the Adler Memory Clinic at Yale, finally diagnosed Antonio, 61, with frontotemporal dementia (FTD), which is an umbrella term for a diverse group of uncommon disorders that affect the frontal temporal lobes of the brain—areas primarily associated with personality, behavior and language.
The Adler Memory Clinic is staffed by a group of neurologists that also includes Drs. Jaime Grutzendler, Haakon Nygaard, and Darren Volpe. They work closely with the Dorothy Adler Geriatric Assessment Center at Yale, an outpatient consultative service with a national reputation. The neurologists have access to innovative therapies—sometimes before they hit the market—and special expertise in dealing sensitively with dementia.
Consulting a doctor early
They say too many patients put off consulting a physician about forgetfulness and related behavioral issues, and by the time they see them damage to the brain is often advanced. “There’s no reason to write these symptoms off as advancing age,” said Dr. Strittmatter.
He said suspicious symptoms might include:
- Frequently forgetting conversations
- Frequently entering a room and then forgetting what you came to do
- Frequently losing things
- Having increasing difficulty performing work activities or chores at home
“Catching dementia early is going to be more and more important,” says Dr. Volpe. While doctors can’t restore lost memory, there are medications that can slow decline in some forms of dementia—and new drugs in development that have the potential to preserve memory, he said. There is no cure for FTD, but Adler Memory Clinic physicians were able to prescribe medications to help Antonio with depression and other symptoms, Dr. Strittmatter said.
Comprehensive support
New patients in the clinic typically spend an hour and a half, Dr. Grutzendler said. In addition to seeing the neurologists, they have access to a neuropsychologist—a clinician who has expertise in the relationship between the brain and behavior—and sophisticated imaging, including MRI and PET scans. MRI was key to giving Antonio an accurate diagnosis, Dr. Strittmatter said.
In addition, the clinic connects families to support groups and services that can help with the often draining work of caring for a patient with dementia. “In some ways, you are treating the family,” said Dr. Grutzendler.
When diagnosing dementia, “you really have to look at the details,” Dr. Grutzendler added. There are as many as 50 known causes of dementia in addition to Alzheimer’s, which 5 million Americans are currently living with. Some dementias may be due to underlying causes ranging from anemia to clinical depression to vitamin deficiencies. Many cases are difficult to diagnose, and Antonio’s experience of seeing multiple doctors is a common one that can result in a long list of prescriptions, which Dr. Grutzendler said he can often simplify.
In fact, diagnosis is critical to managing medications in general, said Dr. Volpe. Patients with Lewy Body Dementia (LBD), for instance, may have extreme reactions to certain types of sedatives. LBD is marked by abnormal microscopic deposits that damage brain cells over time, and can resemble both Alzheimer’s and Parkinson’s diseases.
Research holds reason to hope
There may be better treatments for dementia on the horizon. Dr. Strittmatter’s research uncovered the process by which the plaque associated with Alzheimer’s causes brain cells to die. In the laboratory, his team was able to block the process with two drugs: MTEP and AZD0530. A Yale-led clinical trial is now testing the benefit of AZD0530 for Alzheimer’s patients, while a clinical trial based on the MTEP outcome is being developed.
The more scientists learn about Alzheimer’s, the more they realize that genes play an important role, and the clinic also utilizes genetic testing. Identification and diagnosis of people at high genetic risk for dementia could accelerate research into therapies that can halt declining brain function, Dr. Strittmatter said.
In the meantime, Antonio’s wife said the Adler Memory Clinic provided their family with some resolution. “Tony worked day and night to get his Ph.D. ,” said Victoria of her multi-talented husband. “They used to call him ‘The Renaissance Man’ around campus. ” She said knowing that the accusations that he was faking his disease were unjust have increased her passion about raising awareness.
To contact the Adler Memory Clinic call 203-737-8859.