Finding a Doctor
FINDING THE RIGHT PHYSICIAN
Patients and families face many challenges at all stages of frontotemporal degeneration from getting a diagnosis and deciding about treatment, to managing the terminal stages. Here is a list of medical doctors that you may encounter and suggestions for how to find the right one for your needs.
Each individual will have strengths and weaknesses, and various levels of understanding about FTD. Your relationship with them is as important as their professional credentials, so trust your assessment of whether or not you are receiving the appropriate care.
PRIMARY CARE PHYSICIAN (PCP)
Primary care physicians are also known as general practice physicians, or family doctors. They are usually generalists, responsible for the initial diagnosis and treatment of common medical issues, and for referral to specialists.
Why would I consult with a primary care physician?
Patients most often have to be referred by their PCP to see a specialist or arrange a comprehensive diagnostic evaluation at a medical center. Some FTD patients rely on their PCP for ongoing care during the course of the illness and visit specialists intermittently as the disease progresses. Additionally, your PCP will be critical for maintaining routine physical exams and for providing care for health issues unrelated or indirectly related to FTD.
Internists are physicians who are trained in the management of health issues involving multiple bodily systems and care for adults with concurrent diseases and health problems. They may provide both diagnostic and routine clinical care. Some internists have sub-specialties. Pediatricians and geriatricians are perhaps the two most common sub-specialists within internal medicine.
Why would I consult with an internist?
Many adults designate an internist as their primary care physician. Internists can be particularly helpful if there are multiple health issues involved besides FTD, such as diabetes, or hypertension.
A geriatrician is an internist who specializes in treatment of diseases which typically affect “seniors” (people over 65), as well as “normal” age-related concerns. For example, some of the symptoms typically handled by a geriatrician include frequent falls, loss of mobility, incontinence, and memory loss or cognitive decline.
Why would I consult with a geriatrician?
Geriatricians may be able to best manage complications related to FTD in individuals with health concerns typical of older individuals. Additionally, a geriatrician may be more experienced with the medications and treatments used to manage these symptoms. Many older adults designate a geriatrician as their primary care doctor.
Psychiatrists are physicians who specialize in the diagnosis and treatment of mental illness and emotional disorders. They can prescribe medications or medical treatments in addition to talk therapy. Many people may consult with a psychiatrist in the process of seeking a diagnosis for the early changes in thinking or behavior associated with FTD.
Why would I consult with a psychiatrist?
Psychiatrists are knowledgeable in the medications used to treat anxiety, depression, agitation or aggressive behaviors. This experience can be helpful in managing similar symptoms in FTD.
A neurologist is a physician with special training in the nervous system, including the brain, spinal cord and peripheral nerves, and associated muscle groups. A neurologist can diagnose by examining nerves of the head and neck, reflexes, muscle strength, gait and balance, and through tests of memory and cognition, including brain imaging such as MRI or PET scans.
General neurologists routinely see patients on a clinical basis who have a wide array diseases and symptoms. Some neurologists specialize in a specific disease, or groups of diseases such as Parkinson’s disease, ALS and Alzheimer’s and related dementias. These specialists typically conduct research on that disease and may only see patients in the context of their research.
Why would I consult with a neurologist?
The principle reason to consult a neurologist is for a diagnosis. A neurologist is probably involved either directly, or as a consultant, in every diagnosis of FTD that is made. The second most common reason to consult a neurologist is to clarify the causes of new symptoms or behaviors as the disease progresses.
BEHAVIORAL & COGNITIVE NEUROLOGIST, NEUROPSYCHIATRIST
These sub-specialties cross the medical fields of psychiatry and neurology. The field focuses on the connections between behavior and brain anatomy and function, as well as learning and how the brain processes and stores information.
Why would I consult with a Behavioral Neurologist, or Neuropsychiatrist?
Caregivers and patients will most likely encounter this specialist either in a medical research center during diagnostic testing, or as a consultant on behaviors that are particularly difficult to manage. They can provide guidance and advice on medications and treatments, but do not always see patients on a routine clinical basis.
These sub-specialists are typically associated with complimentary medical treatments or centers and will most likely be identified by the primary care physician upon referral or work in consultation with a medical center team.
SLEEP DISORDER SPECIALIST
Sleep specialists are doctors who study the physical, mental, and psychological processes of sleep, which includes how waking activities and behaviors may impact sleep patterns. It is across-disciplinary specialty that bridges neurology, psychiatry, and internal medicine.
Why would I consult with a sleep specialist?
Sleep disturbances are common among people with FTD including insomnia, nighttime agitation, or sleeping for exceptionally long periods of time. Sleep specialists may help to diagnose and manage some of the behavioral issues specific to FTD.
A radiologist is a physician who administers and interprets medical imaging tests, such as x-rays, CT scans, PET scans, ultrasounds, or MRI. They may also perform minimally invasive surgical procedures such as endoscopy.
Why would I consult with a radiologist?
The radiologist interprets imaging results and can correlate their findings with other medical examinations and tests. Caregivers and patients will rarely consult directly with a radiologist.
PALLIATIVE CARE PHYSICIAN
Palliative care aims to enhance the quality of life of patients who are faced with a life-threatening illness. They provide relief from pain and other symptoms of illness. Palliative care can be offered any time in the course of an illness along with curative therapies, but it is usuallyassociated with hospice care which precludes treatment intended to cure a terminal disease. A palliative care doctor often orchestrates the care between several specialists.
Why would I consult with a palliative care physician?
A palliative care physician will most likely be engaged as part of a hospice program, and only rarely as part of care during the earlier stages of the disease. A hospice medical director will often be a palliative care physician.
A physiatrist is a medical doctor who specializes in physical rehabilitation and pain medicine. They focus on the body’s musculoskeletal system, which includes bones, joints, muscles, ligaments, tendons, and nerves. Physiatrists treat patients with problems ranging from simple low back sprains to complex disorders, such as spinal cord injury.
Why would I consult with a physiatrist?
Physiatrists can provide treatment when the patient is experiencing a loss of mobility, tremor or stiffness. These treatments may provide some temporary relief but would not slow down the progress of the disease. Many physical rehabilitation centers will be directed by a physiatrist, or have them on staff to provide guidance on physical or occupational therapies.
Pathologists are doctors who study the cause and development of disease. A pathologist will most likely be consulted to perform and/or interpret the results of an autopsy. Forensic pathology is the use of pathology for legal purposes, one of which is deciding cause of death. A pathologist specializing in genetics may be involved in genetic testing.
HOW DO I FIND A….
Primary care physician, internist or geriatrician
Word of mouth may be the best way to find a PCP. Asking family or friends is a good way to start, but if possible ask other FTD caregivers for names of doctors who are familiar with the disease. U.S. insurance companies will provide you with lists of providers in your area. Another potential source for recommendations is your local Alzheimer’s chapters where you can find lists of service providers specifically for dementia care.
Again, word of mouth is a good way to find a psychiatrist. Because a psychiatrist treats potentially disturbing behaviors it is is particularly important to find someone you are comfortable with, especially if talk therapy is going to be provided along with management of medications. Asking other caregivers for recommendations of psychiatrists is another good strategy.
It may be best to ask your PCP for a recommendation for a neurologist with whom he or she has worked well in the past. Attending an FTD support group and asking other caregivers for recommendations is another good strategy.
Neurologist specializing in FTD
The medical centers listed on AFTD’s support and resource pages have neurologists on staff; many of the centers are directed by a neurologist. Expect these centers to see patients for the initial diagnostic evaluation and subsequent follow up appointments or research. Be sure to ask if you are mainly seeking on-going clinical care. Neurologists who specialize in the clinical care of FTD are rare.
The same is true of all the U.S. federally funded Alzheimer’s Disease Research Centers (ADRC) and almost all other clinics or medical centers offering “Memory care” or Alzheimer’s treatment.
Visit the ADRC website for a listing of these centers by state.