The Pick's Disease Support Group website has a section for caregiver stories and experiences. Read "Pick's from the inside out", the story of Dr. Bob Fay and his experience living with frontotemporal dementia.
Frontotemporal dementia is the name given to a group of progressive dementias that primarily affect an individual’s personality, behavior, and speech. Diseases in this group include the following:
Unlike most other forms of dementia, memory is not affected in people with frontotemporal dementia (FTD) until later in the disease. FTD mainly affects different parts of the brain than are affected by other forms of dementia: the frontal and temporal lobes. Also, this form of dementia strikes people at a relatively younger age — usually between the ages of 40 and 60. However, FTD can affect individuals both younger and older than this range.
Among relatively younger adults, FTD is the 2nd most common dementia after early-onset Alzheimer’s disease. 250,000 Americans are estimated to be affected by Frontotemporal Dementia (AFTD 2010). For individuals over 65, frontotemporal dementia is the 4th most common form of dementia after Alzheimer’s disease, vascular dementia, and Lewy body dementia (Brust, 2006).
Causes, risk factors, and symptoms of FTD are somewhat different from other forms of dementia. Follow the links below to learn more.
Approaches to diagnosis and treatment of frontotemporal dementia are similar to other forms of dementia. Follow the links below to learn more.
Frontotemporal dementia can be especially difficult for caregivers to deal with because, unlike other forms of dementia, it can affect younger individuals who are still working or who have children in the home. This disease can affect decision-making abilities early on, so it is important to begin making financial and legal decisions soon after the disease starts. In addition to setting up a Durable Power of Attorney, caregivers should also consider having a driving evaluation for their loved ones, before driving becomes a problem.
Care partners should encourage their loved ones to participate in support groups for individuals with frontotemporal dementia, whether online or in person. These interactions can be an important way to deal with a disease that other people often do not understand.
For other recommendations on caregiving or frontotemporal dementia, look through the rest of our Caregiver Tips section and visit the links below.
Ratnavalli E, et al. The prevalence of frontotemporal dementia. Neurology. 2002. Jun 11;58(11):1615-21
Brust, JCM, Marder, K, et al. Current Diagnosis and Treatment in Neurology. The McGraw-Hill Companies. 2006.
The Association for Frontotemporal Degeneration. (2010). Frontotemporal Dementia. Available at http://www.theaftd.org/frontotemporal-degeneration/ftd-overview. Retrieved on July 19, 2010.
Source: University of California, San Francisco Memory and Aging Center
Description: This web page provides extensive information on the group of diseases that fall under the category of frontotemporal dementia and discusses the demographics, symptoms, diagnosis, and treatment of the disease. There is also a section that compares the symptoms of frontotemporal dementia to those of Alzheimer's disease.
Source: National Institute of Neurological Disorder and Stroke (NINDS)
Description: This web page describes frontotemporal dementia, including the two clinical patterns: problems with language and changes in behavior. It also discusses the genetic components of the disease, treatment, prognosis, and current research. Links to other resources on FTD and to current studies seeking patients are provided.
Source: The Association for Frontotemporal Dementias
Description: This national non-profit organization's website offers support to caregivers through newsletters, online videos, caregiver guides, support groups, and other resources. The group also promotes and funds research into finding the cause and a cure for frontotemporal dementias.
Description: This web page describes frontotemporal dementia, how it affects a person, diagnosis, risk factors, and treatment.
Source: Alzheimer's Society (United Kingdom)
Description: This web page gives a brief introduction to frontotemporal dementias, discusses who is affected; personality and behavior changes, language problems, and other symptoms; later stages of the disease; diagnosis; genetic components; treatments; and suggested reading.
Description: This list of scientific journal articles provides links to abstracts, full text, and PDFs of articles on issues related to frontotemporal dementia.
Source: Frontotemporal Dementia Caregiver Support Center
Description: This website provides a starting point for people looking for more information on frontotemporal dementias. The website gives hundreds of links to websites and articles about issues related to frontotemporal dementia, as well as recommended books, and a list of internet and local support groups.
Source: FTD Support Forum
Description: This international support group, offers a medium for caregivers of different types of frontotemporal dementias to meet online and share information through a discussion forum and chat room.
Source: The Association for Frontotemporal Degeneration
Description: This web page describes some of the tests that may be used to diagnose frontotemporal dementia, such as blood work, neurological exams, EEGs, MRIs, and many others.