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Alzheimer's, Dementia & Mental Health

Frontotemporal Degeneration Dementia Draws More Attention, Research Funding

This early onset dementia strikes 10 years earlier than most; almost $6 million in research being funding by three agencies of the National Institutes of Health

Oct. 24, 2014 - Approximately 50,000 Americans live with frontotemporal degeneration, or FTD, which strikes people most often in their 50s or 60s, and causes severe behavioral changes and problems with language and cognition. The National Institutes of Health will award three large, five-year projects targeting this specific form of dementia, known as frontotemporal because of the areas of the brain that are affected.

As the disease progresses, individuals have difficulty planning activities, interacting with others and caring for themselves. (Read more about the disease below news story.)

The projects, funded by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Aging (NIA) and the National Center for Advancing Translational Sciences (NCATS), announced today total more than $5.9 million for 2014.

 “The grants cover a wide spectrum of FTD research, from fundamental discoveries of the genetics behind this disorder to testing potential therapies in patients. We hope that these projects will provide answers and new avenues of treatment for this devastating condition,” said Walter Koroshetz, M.D., acting director of NINDS.


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“The projects aim to advance our understanding of frontotemporal degeneration by improving diagnosis, identifying preventive strategies and providing new insights into the genetics underlying this complex disorder,” said Margaret Sutherland, Ph.D., program director at NINDS.

In 2013, NIH sponsored a workshop on Alzheimer's Disease-Related Dementias: Research Challenges and Opportunities. The workshop helped to identify gaps in dementia research and establish a set of priorities and goals. The new FTD grants address a number of the recommendations established at the workshop.

“This opportunity to identify the biomarkers that may signal the onset and progression of FTD in symptom-free volunteers with the familial form of the disease may one day lead to effective interventions,” said John Hsiao, M.D., a program director at NIA.

“These multicenter, multi-disciplinary projects will enable scientists to combine their areas of expertise to design novel approaches for FTD research, with the ultimate goal of providing treatments to more patients more efficiently,” said Pamela McInnes, D.D.S., M.Sc.(Dent.), deputy director of NCATS.

The grants are:

  ●  Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects
Principal Investigator: Bradley F. Boeve, M.D.; Mayo Clinic, Rochester, Minnesota; AG045390

Dr. Boeve and his colleagues will enroll 300 members of families with familial frontotemporal lobar degeneration with changes in genes associated with the disorder. Study participants will undergo annual brain scans, blood and cerebrospinal fluid analysis as well as behavioral and cognitive tests. Dr. Boeve’s team will use that data to identify biomarkers, which will help determine the effectiveness of potential therapies.

  ●  The Frontotemporal Lobar Degeneration Clinical Research Consortium
Principal Investigator: Adam L. Boxer, M.D., Ph.D.; University of California, San Francisco; NS092089

Dr. Boxer and his colleagues will work with advocacy groups to establish a clinical research consortium to support development of FTD therapies. The groups involved in this project include: the Association for Frontotemporal Degeneration, Alzheimer’s Drug Discovery, Bluefield Project to cure FTD, CBD Solutions, Cure PSP and the Tau Consortium. The goals of the research network will be to improve clinical trial design and bring together a variety of techniques and methods to generate new types of treatments for FTD. The Frontotemporal Lobar Degeneration Clinical Research Consortium is part of the NIH NCATS Rare Diseases Clinical Research Network.

  ●  Pathobiology of Neurodegeneration in C9ORF72 Repeat Expansion

Principal Investigator: Leonard Petrucelli, Ph.D.; Mayo Clinic, Jacksonville, Florida; NS084974

A specific change, or mutation, in the C9ORF72 gene is the most common cause of FTD and amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects the muscles. Using cells in a dish, animal models and human tissue, Dr. Petrucelli and his team will comprehensively investigate the mechanisms underlying C9ORF72-related neurodegeneration and develop therapies to overcome the effects of the mutation.

NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

The National Institute on Aging leads the federal government effort conducting and supporting research on aging and the health and well-being of older people. It provides information on age-related cognitive change and neurodegenerative disease specifically at its Alzheimer’s Disease Education and Referral (ADEAR) Center at

NCATS focuses on what is common among diseases and the translational science process. The goal is to get more treatments to more patients more efficiently by developing new approaches, technologies, resources and models; demonstrating their usefulness; and disseminating the data, analysis and methodologies to the community. For more information, visit

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit

The Association for Frontotemporal Degeneration

Frontotemporal Degeneration is Second Most Common Cause of Early Onset Dementia

Frontotemporal degeneration is not as rare as once thought; it is considered to be the second most common cause of early onset dementia. However, because of the wide range of symptoms and their gradual onset, FTD is often initially misdiagnosed as a psychiatric problem, Alzheimer’s disease, Parkinson’s disease or vascular dementia.

FTD vs. Alzheimer’s Disease

Both frontotemporal degeneration (FTD) and Alzheimer’s disease (AD) are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. However, several important distinctions can help to differentiate between the two:

  ●  FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimer’s disease is loss of memory.

  ●  FTD often begins earlier than AD with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimer’s patient is diagnosed.

  ●  FTD patients exhibit behavioral and personality changes (lack of concern for social norms or other people, lack of insight into their own behaviors), but retain cardinal features of memory (keeping track of day-to-day events, orientation to space and time).

  ●  AD patients display increasing memory deficits, but typically retain socially appropriate behavior.

  ●  Some FTD patients may have only language dysfunction (this is seen in the two types of progressive aphasia: semantic dementia and progressive non-fluent aphasia). And the pattern of language loss may be specific, such as an inability to name a familiar, everyday object.

  ●  The language decline seen in AD patients involves a milder problem with recalling names and words.

  ●  FTD patients are more likely to display early motor abnormalities, such as difficulty walking, rigidity or tremor (similar to Parkinson disease), or muscle atrophy and weakness.

More at Association for Frontotemporal Degeneration

What is dementia?

Dementia is the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of daily living.

Many conditions and diseases cause dementia. The most common cause of dementia in older people is Alzheimer’s disease. Other causes include different kinds of brain changes that lead to vascular dementia, Lewy body dementia, and frontotemporal disorders.

In addition, some people have mixed dementia—a combination of two or more disorders, at least one of which is dementia. A number of combinations are possible. For example, some people have Alzheimer’s disease and vascular dementia at the same time.

Other causes of dementia include Huntington’s disease, Creutzfeldt-Jakob disease, head injury, and HIV. In addition, some conditions that cause dementia, such as normal pressure hydrocephalus, thyroid problems, and vitamin B deficiency, can be reversed with appropriate treatment. For an overview of all types of dementia, see the booklet The Dementias: Hope Through Research. For more information about these conditions, visit the National Institute of Neurological Disorders and Stroke.

More at National Institute on Aging

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