My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

Information sourced from the Association for Frtontemporal Degeneration:

How do I find a doctor who knows about FTD?

The medical specialist best able to evaluate cognitive and behavior changes will be a neurologist, behavioral neurologist or neuropsychologist. If a local physician suspects FTD, you may want to consult a university medical center or a memory and cognitive disorders clinic for doctors with experience in Alzheimer’s disease and related dementias.   The medical and research centers in the U.S. and Canada that have physicians with a specific interest in FTD are included in the US Regions and Canadian Regions sections of this site.

How do I find a support group for FTD caregivers?

Support groups offer the unique perspective and encouragement shared by people going through similar experiences.  Because FTD and Alzheimer’s disease are different, FTD caregivers may not feel their specific needs are addressed in a general dementia group.  AFTD facilitates a growing network of FTD caregiver support groups across the U.S. and Canada.  While still not nearly enough, we are encouraged that new groups are starting regularly.  To see if there is an FTD caregiver support group near you visit your region in the US Regionsand Canadian Regions sections of this site.

What is the life expectancy of someone with FTD?

Research shows that people generally live from 2 to 10 years after diagnosis, with an average reported of about 6 ½ to 7 years.  The range of survival extends from as few as 18 months to over 20 years, so it is impossible to predict any one individual’s situation.  Still, neurologists knowledgeable about frontotemporal degeneration are able to evaluate the rate of disease progression with patients and families to help them plan for care.

What should I expect for my family member over the progression of the disease?

Each person’s experience with the disease is different.  Since there is no treatment to stop the progression, everyone will eventually advance to being completely dependent on care.  The most comprehensive resource that addresses caring for someone with FTD is the book What if it’s Not Alzheimer’s, by Lisa Radin and Gary Radin.  It is the first book to address the most common issues that may concern you with chapters written by prominent experts in the field.  An updated version was published in 2008 and is available through AFTD or Amazon.com.

 A family member has been diagnosed with FTD.  Is it hereditary?

Research into the causes of FTD is very much continuing.  We know that about 10% of FTD cases are hereditary, meaning that first-degree relatives of someone diagnosed with FTD have a 50% chance of developing the disease. In about  20-40% of FTD cases the disorder appears to be “familial,” meaning that it is not directly inherited but that members in this family are at elevated, though undetermined, risk for developing the disorder. For most families (50-70%) FTD is considered sporadic, meaning the disorder is not being inherited, and the risk to family members is the same as that of any individual in the general population.   Read the piece on Geneticsunder What is FTD for more details.

What is the difference between a CT scan, an MRI and a PET scan?

The CT (computerized tomography) scan uses X-rays to create images of the brain structure to evaluate for bleeding, tumors or other injury.  Magnetic Resonance Imaging (MRI) uses radio waves and magnets to image the brain from multiple angles showing brain structures in greater detail than the CT.  A PET scan (Positron Emission Tomographycreates a functional image of the brain that shows cellular level metabolic changes occurring in the tissue.  Because disease processes typically start with changes at the cellular level, a PET scan can often detect changes earlier than CT or MRI.  PET scans are often used to complement CT or MRI data.  Advanced brain imaging techniques are becoming increasingly important in the diagnosis of degenerative brain disorders such as FTD.  For more information see  Diagnosis and The Importance of Biomarkers

Is there a blood test for FTD?

There is no single diagnostic test that can confirm or rule out a diagnosis of FTD.  As a result, the process of coming to a clear diagnosis of FTD can be long and difficult. There are many potential causes of cognitive and neurological changes.  Clinicians use an array of evaluations including routine blood work, neurological exam, neuropsychological testing and brain imaging, to rule out certain causes and identify a potential diagnosis.  An experienced clinician is generally able to provide a clinical diagnosis based on review of the results.  We still cannot know with certainty the underlying cause of the person’s dementia unless the brain tissue is examined after death via autopsy.  Researchers are working to identify specific biomarkers – tests that provide information about the underlying disease – such as blood tests, cerebrospinal fluid protein levels or genetic mutations that would improve the ability to make accurate diagnoses and identify potential targets for treatment.  For more information see  Diagnosis and The Importance of Biomarkers.

 Are seizures a sign of the progression of the disease to a later stage?

Any of the dementias can have seizures as a complication, and the presence of seizures does not necessarily correlate with the severity of the disease.  It is important to have a medical evaluation of seizures because they can have many causes that are not related to FTD (like infection or bleeding in the brain), and your doctor may be able to treat that cause, as well as give anti-seizure medication.  A caregiver should try to note specific details of the episodes so that their doctors can decide whether the event was a seizure or not (duration, what time of day did it occur, did the patient become entirely unresponsive, was there shaking or jerking and of which limbs, how long did it take the patient to recover). This information, combined with the patient’s history, imaging and laboratory testing will help in an evaluation.

Does traumatic brain injury cause FTD?

There has been no research to date investigating the connection between traumatic brain injury and FTD.   Frontal dysfunction is common in traumatic brain injury and can result in symptoms similar to FTD.  There is no evidence to date of a causative relationship between brain trauma and FTD.

My family member is on hospice. Is it too late to donate his brain for research?

Donation of the brain for research purposes is something families may hear about, but find difficult to decide until late in the disease.  However, it is much harder to make arrangements for brain donation near or at the time of death.  Studying diseased tissue is important to advancing research, but the greatest value to scientists striving to understand FTD comes from viewing pathology results in light of the clinical course of the disease.  For this reason, most FTD research centers only accept brain tissue from people enrolled in their observational studies during life.  To learn more about planning for brain donation and participating in research, visit the Researchsection of this website.

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