Dementia comes in many forms and many stages. The term is so often used without a formal definition. Many confuse Alzheimer’s disease with dementia. The terms are not interchangeable. Dementia is a permanent and irreversible brain disorder that robs a person of independence. There are no current treatments that can reverse a dementia. There are no “pseudodementias.” If one is confused because of thyroid disorder or deficiency of vitamin B 12 and replacement makes the confusion go away, the person was not demented.

There are many possible causes of dementia. Dementia many arise from a stroke or a head injury. Dementia is often associated with Alzheimer’s disease, Lewy body disease, and Parkinson’s disease. A less common (estimates are at about 50000 in the United States) and often more challenging form of dementia is called frontotemporal dementia. Frontotemporal dementia is a progressive brain disorder that has at least major two subtypes: behavioral and language disorder. These disorders typically strike at a younger age, progress faster, and do not attack memory first as does Alzheimer’s disease.

The behavioral subtype is characterized by changes in personality. The afflicted person has decline in decision making, judgment, and reasoning. The person may lose inhibitions, and moral judgment. They make shop lift or have eating binges or other stereotyped or compulsive behavior like hording. They are apathetic and often socially inappropriate. There are often years of misdiagnosis ranging from midlife crisis, stroke, or psychiatric disorder (e.g., depression, bipolar disorder, anxiety disorder, PTSD, psychopathic personality).

The language subtype of frontotemporal dementia is often called primary progressive aphasia. It is characterized by struggling to get words out. As the disorder progresses speech becomes more halting and finally either mutism or a form of babbling appears. The afflicted person, in the early stage, often knows what they want to say but cannot find the word. As it progresses speech becomes less and less fluent but memory is not as much of an issue as not being able to say what one wants to say.

The first cases of frontotemporal dementia were described by Arnold Pick and hence were called “Pick’s disease.” Now these disorders are called frontotemporal dementia or FTD for short. Frontotemporal dementia often looks very similar to what we call Alzheimer’s disease in its middle to late stages – as do most progressive dementing disorders. Frontotemporal dementia often appears in the 50s and survival averages about 8 years.

There are no currently approved medical treatments for frontotemporal dementias. They are occasionally associated with bursts of poorly understood creativity. The most effective interventions are aimed at the caregivers who must manage through the years of misdiagnosis and progressive deterioration at a comparatively young age.