Frontotemporal Dementia Caregiver Support Center

Definitions | Signs and Symptons | Diagnosis/Evaluation | Genetics | Videos
Frontotemporal | FTDP-17 | Corticobasal Degen. (CBD) | Progressive Aphasia | Similar Diseases | Dementia like Diseases
Managing Behaviors |Management Issues | Safety Issues | Late Stages | Taking Care of Yourself | Stories | Children | Poems |
Insurance | Social Security Disability Ins | Living Will | Power of Attorney | Guardianship | Financial | Other Legal
Research Centers | Map of Research Centers | Add a Center | Brain Endowment | Research Articles
subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link
subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link
subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link
subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link

What is Dementia - Definitions

The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
Quick Links

The National Institutes of Health defines "dementia" not a specific disease, but a descriptive term for a collection of symptoms that can be caused by a number of disorders that affect the brain. People with dementia may have significantly impaired intellectual functioning that interferes with normal activities and relationships. They also may lose their ability to solve problems and maintain emotional control, and they may experience personality changes and behavioral problems, such as agitation, delusions, and hallucinations. While memory loss is a common symptom of dementia, memory loss by itself does not mean a person has dementia. Doctors diagnose dementia only if two or more brain functions, such as memory and language skills, are significantly impaired without loss of consciousness.  Some of the diseases that can cause symptoms of dementia are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia, Huntington’s disease, and Creutzfeldt-Jakob disease.  Doctors have identified other conditions that can cause dementia or dementia-like symptoms including reactions to medications, metabolic problems and endocrine abnormalities, nutritional deficiencies, infections, poisoning, brain tumors, anoxia or hypoxia (conditions in which the brain’s oxygen supply is either reduced or cut off entirely), and heart and lung problems.  Although it is common in very elderly individuals, dementia is not a normal part of the aging process.

Dr. Josepha A. Cheong discusses that dementia is a clinical syndrome which is acquired and represents a deterioration from previous function in at least 3 of the following functions:

  • Language
  • Visospatial Skill
  • Executive Abilities
  • Emotion

The South Central Wisconsin Chapter of the Alzheimer's Association provide an article about Frontotemporal Dementia. The articles says this disorder occurs in people from 30 to 75 years old, most cases are diagnosed in people in their 40's, 50's and 60's. Incidence seems to peak around 55 to 65 years of age, then decline.

Also in this article from South Central Wisconsin Chapter, that can be a concern is the first symptoms tend to affect personality and behavior, doctors may initially misdiagnose FTD as a psychiatric disorder.


Disease Clinical Characteristics

Pick's Disease

  • Personality and behavioral changes; disinhibition, inappropriate social behaviors, loss of mental flexibility and empathy, development of obsessive-compulsive behaviors, compulsive overeating, food cravings, putting objects in mouth
  • Language problems: use of wrong words, echoing what others say, mutism can develop
  • Difficulties in thinking, concentrating, paying attention, gradual emotional apathy, loss of moral judgment, generalized dementia
Preventable: No
  • Behavioral changes: loss of initiative; disinhibition, obsessive-compulsive behavior, restlessness, verbal aggressiveness
  • psychiatric symptoms: delusions, visual or auditory hallucinations
  • Cognitive decline: word finding difficulties, other language difficulties though comprehension remains preserved; executive functions, attention, and abstract reasoning become impaired, mutism eventually develops
Preventable: No
Primary Progressive Asphasia (PPA)
  • A degeneration of nerve cells in the parts of the brain that control our ability to use language
  • Slow decline of the ability to use language in speaking, understanding, reading, and writing
  • Other types of mental processes are relatively normal initially and may remain normal for years, but begin to decline with time
  • More prevalent in males than in females in comparison to dementia that involves forgetfulness or memory loss, which is more prevalent in females
  • More common in younger individuals, with symptoms usually starting in the 50’s

The types of language difficulties that occur differ among individuals, but generally involve things such as the following:

  • Increased difficulty thinking of words that results in:
    - substituting the wrong word (e.g., "school" for "work")
    - mistakes in pronunciation (e.g., "track" for "truck")
    - talking around the word (e.g., "We went to the place where you can get bread" for the words “grocery store”)
  • Problems reading or writing that result in:
    - inability to write checks, letters
    - difficulty following written directions, reading signs
  • Reduced ability to understand speech
    - trouble following conversations, especially in larger groups
    - asking for information to be repeated and misunderstanding things that are said, even though hearing is normal
  • Decreased use of language
    - speech may become empty of any real information and difficult to understand early in the course of the illness
    - eventually may be unable to use speech to communicate, becoming mute
  • Problems in arithmetic and calculations
    - may lose ability to perform even simple mathematical operations
    - may have problems making change
Preventable: No
Preventable: No
Supranuclear Palsy
  • Motor difficulties: problems with balance and gait, problems controlling eye movement, involuntary closing of the eyes, inability to maintain eye contact with others, difficulties with swallowing
  • Personality/behavioral changes: apathy, increased irritability, angry outbursts, depression, progressive dementia
Preventable: No
Coritcobasal Degeneration (CBD)
  • Signs of Parkinsonism: poor coordination, rigidity, impaired balance
  • Cognitive and visual-spatial impairments, loss of ability to make familiar and purposeful movements
  • hesitant and halting speech
  • Sudden contractions of muscles or muscle groups
  • Difficulty swallowing
Preventable: No
Vascular Dementia

Alzheimer's Society provided the following information about Vascular Dementia.

People with vascular dementia may particularly experience:

  • Problems concentrating and communicating
  • Depression accompanying the dementia
  • Symptoms of stroke, such as physical weakness or paralysis
  • Memory problems (although this may not be the first symptom)
  • A ‘stepped’ progression, with symptoms remaining at a constant level and then suddenly deteriorating
  • Epileptic seizures
  • Periods of acute confusion.

Other symptoms may include:

  • Hallucinations (seeing things that do not exist)
  • Delusions (believing things that are not true)
  • ‘Wandering’ and getting lost
  • Physical or verbal aggression
  • Restlessness
  • Incontinence

Preventable: Yes. Early detection and an accurate diagnosis are important! Although the brain damage that causes vascular dementia cannot be reversed, it may be possible to slow the progression of the disease in a number of ways including:

  • Taking medication to treat any underlying conditions, such as stroke, high blood pressure, high cholesterol, diabetes or heart problems
  • Adopting a healthier lifestyle by stopping smoking, taking regular exercise, eating healthily and only drinking alcohol in moderation
  • Receiving rehabilitative support, such as physiotherapy, occupational therapy and speech therapy, to help the person maximise their opportunities to regain their lost functions.



Best FTD Resources

What If It's Not Alzheimer's
© 2003 by Lisa Radin and Gary Radin

Chapter 1
Pages 29-39

Association of Frontotemporal Dementia (Website)

Overview Information
General Information for FTD/MND
General Information about Pick's Disease

Pick's Disease Support Group (Website)

General Information
Examples of MRI images

University of California, San Francisco (Website)

I recommend everyone view this video!

"When I'm 64"

The Memory and Aging Center and UCSF in San Francisco has started to create a film about Frontotemporal Dementia called "When I'm 64". Currently there is a trailer of the movie you can see by clicking on the link below or by going to the "When I'm 64" website.

"When I'm 64" Trailer Movie

When I'm 64 Website

You will need QuickTime 7.x or later to be able to run the video.

They are also looking for a different name for the movie too. Which I agree, it doesn't portray FTD. It is a catchy name, but I think we can do better.

They are also looking for video of people with FTD before diagnosis. If you have video and would like to maybe help with this video, please click here or contact them at :

When I'm 64
c/o The Memory and Aging Center
350 Parnassus, Ste. 706
San Francisco, CA 94117

Family Caregiver Alliance (Website)
National Institutes of Health (Website)


Other Internet Articles


Alzheimer's Association
Basics of Brain Imaging

Facts about dementia

  • Dementia is a general term used to describe problems with memory and thinking
  • Early signs can be very subtle and not immediately obvious
  • Common symptoms are:
    • Memory loss, particularly recent memory
    • Confusion
    • Personality change
    • Withdrawal
    • Loss of ability to do everyday tasks
  • Alzheimer's disease is the most common form of dementia
  • Other causes of dementia include
    • Vascular dementia
    • Pick's disease
    • Dementia with Lewy bodies
    • Alcohol related Korsakoff's disease
    • Other rare conditions

At the Alzheimer's Disease Education Referral Center website you can find an article called, " Frontotemporal Dementia: Growing Interest in a Rare Dementia."

"For the Record" website has an article called "Frontotemporal Dementia Stealing Lives at an Early Age by Kara McDonald.

Northwestern University website has this article about dementia.

The Victorian Government in Australia has a website called Better Health Channel, which has this pages about dementia.

General Information about Dementia
Dementia - Through All It's Stages
Dementia Explained

Continuing Medical Education website offers this one page. In the middle of the page is an article about FTD.

The American Speech-Language-Hearing Association (ASHA)

The Sacramento County Network of Care provides an informative web page about dementia.

Dr. Lawrence S. Honig at Columbia University talks about FTD in this article called "Recognition of Vascular Dementia, Dementia with Lewy Bodies, and Frontotemporal Dementia"

Dr. Rodney Short wrote an article called"Frontotemporal Lobar Degeneration" in 2000.

Dealing With Dementia

The National Parkinson Foundation provide an article called:

Dementia Explained: Parkinson Disease Dementia, Lewy Body Dementia, Alzheimer Disease: Are they the Same? Or Different? Does It Matter?


Understanding dementia

Dr. KRISHNAMOORTHY & JOTHEESHWARAN wrote this article about the general information about dementia and dementia issues in India.

+11/13/06 (Patty H.)
Yahoo Health offers a web page about dementia. This information was created by a company called Healthwise here in Boise, Idaho.;_ylt=AlXxwoZ_3nscslGKRRyhZjamxbAB


The Mayo Clinic offers this article called, "Dementia: Not always Alzheimer's"

+11/17/06 (Patty H.)

The University of Florida Memory Disorder Clinic offers this article called,
"Overview of Dementia (Progressive Memory Disorders)"


The American Heart Association provide this article on their website called,
"Lowering blood pressure slows development of brain abnormalities"

+11/18/06 (Darlene R.)

The South Central Winconsin Chapter of the Alzheimer's association provide an article about Frontotemporal Dementia.

+11/19/06 (Jeanette D.)

The Montana Geriatric Education Center provided this document called,
When Traditional Care Falls Short:
Caring for People with Atypical Presentations of Cortical Dementia

PDF File

+12/06/06 (Mary M.)[D1006]

Dementia: Supporting people with dementia and their carers in health and social care
National Institute for Health and Clinical Excellence
United Kingdom


Frontal lobe dysfunction explains some behaviors, doctors told
by Connie Jo Discoe
McCook Daily Gazette


About Us | Site Map | Disclaimer | Privacy Policy | Contact Us | ©2006 Brauer Solutions, LLC