Frequently Asked Questions
How can I make an appointment at your center? You can make an appointment by calling the Penn Neurology call center at 215-662-3606 and request an appointment with the Penn FTD Center.
What can I expect at my appointment? You may decide to see a neurologist who specializes in Frontotemporal degeneration (FTD) and related disorders. At the initial visit, the neurologist will review previous medical records (such as physician reports or previous neuropsychological evaluations), take a history from the patient as well as the caregiver, conduct a cognitive assessment, and perform a neurologic exam. Some patients will bring previous imaging studies such as MRI pictures on film or disk. These will also be reviewed with the patient and caregiver. An initial office evaluation typically takes about 60 minutes. Your doctor will check your neurological health by testing your: · Reflexes · Muscle strength · Muscle tone · Senses of touch, sight and hearing · Coordination · Balance During the appointment, your doctor will also conduct a brief mental status evaluation, which assesses: · Memory · Problem-solving abilities · Attention span · Number skills · Language usage · Visuospatial skills A follow-up visit may include a 30 minute re-evaluation by a clinician to look for changes in comparison to the previous evaluation, the appearance of new features, and evaluation of medication side effects. Some patients need to have additional testing, which may include a lumbar puncture to rule out infection and cancer. If the patient is enrolled in our research program, they can also expect 1-2 hours of cognitive testing and an MRI.
Is your research only for older adults? At the Penn FTD Center, we also design studies of memory and language for healthy younger controls between 18-30 years of age. These experiments are typically computer-based tasks, and some may have an MRI component. Compensation will be provided.
I'm a caregiver of someone with FTD. How can I become involved in research? If you are between the ages of 45 and 85 and without complaint of memory or thinking problems, you may qualify to participate as a control subject for the Penn FTD Center. We are always seeking healthy volunteers who meet our criteria to participate in studies of memory, language, and cognition as part of a healthy comparison group. Participation as a control subject includes performing experimental computer and paper-and-pencil tests, and may include an MRI scan.
I'd like to participate in cognitive testing. What's next? Once you decide that you are interested in being a part of our cognitive/behavioral research at the Penn FTD Center, you will be contacted by one of our research specialists to schedule an initial testing session. This session may take place at the Hospital of the University of Pennsylvania following a clinic visit or in the home of you/your loved one, depending on your needs and availability. The focus of the visit is on the administration of standard neuropsychological tests that assess memory and cognitive ability. Our research specialists do their best to ensure that the cognitive testing takes place in a comfortable and friendly environment. Further cognitive testing sessions may be scheduled depending on eligibility, as well as the willingness of you and your loved one to continue your participation in our study. Participation is voluntary.
What is dementia? Dementia is any progressive cognitive decline from adult levels of cognitive performance. This definition of dementia is not restricted to memory, but can also affect (alone or in combination) language, visuospatial functioning, executive functioning, and social functioning. Dementia is associated with many conditions, and some of these are not neurological. For example, declining cognition can be seen in the setting of persistent urinary tract infections, a side effect of different medications, inflammation of blood vessels that carry blood to the brain, or severe depression. There are many neurological causes of dementia as well. Among these are the gradual accumulation of mini-strokes and transient ischemic events ("TIAs"), hydrocephalus ("water on the brain"), meningitis, repeated blows to the head, and persistent on-going partial seizures. Once these conditions are ruled out, there are many neurodegenerative conditions that can lead to dementia. These include frontotemporal degeneration, Alzheimer's disease, Parkinson's-related dementia and other conditions involving involuntary movements, and some individuals with amyotrophic lateral sclerosis.
How is FTD different from Alzheimer's disease? There is sometimes confusion about the difference between Alzheimer’s disease and Frontotemporal degeneration. Alzheimer’s disease and Frontotemporal degeneration are two types of neurodegenerative disease that cause impairments in cognitive functioning. FTD typically presents as a change in behavior or personality or as a progressive aphasia (language difficulty). Alzheimer’s disease affects primarily memory. Age of onset is another key difference. FTD generally affects persons in the late 50’s or 60’s whereas; it is more common for AD to affect persons in later years of life.
Are there any harmful effects from having multiple MRI scans? MRI uses a magnetic field and radio waves to produce images. No ionizing ("harmful") radiation is used. There are no known lasting effects on the body from MRI and therefore no safety concerns with multiple MRI scans. According to the FDA, "There are no known harmful side-effects associated with temporary exposure to the strong magnetic field used by MRI scanners."
You can view a glossary of commonly used terms from the Association for Frontotemporal Degeneration (AFTD) below.