This issue’s question is from a participant at the Bremerton Public Forum.
by Rebecca Logsdon, PhD
Q. What causes early-onset dementia? How common is it?
A. Many people think dementia and Alzheimer’s disease (AD) only affect older adults. Although dementia is much more common in individuals over age 65, recent research indicates that in the United States, as many as a half-million people under age 65 have AD or a related dementia. In fact, the first person ever diagnosed with AD, Mrs. Auguste D., was 51 years old when she was first evaluated by Dr. Alois Alzheimer in 1901. The term “early-onset dementia” is used to describe dementia that affects a person under age 65.
Early-onset dementia can be caused by many conditions, including AD, vascular dementia, mixed dementias, frontotemporal dementia (FTD), Lewy body disease, or a variety of other neurological conditions. Most people with early-onset AD have the same type of Alzheimer’s as late-onset individuals. This common type of AD has not been directly linked to specific genes. We do not know yet why symptoms appear at an unusually young age in these cases. For a smaller number of individuals (about 10%), scientists have identified specific genes that directly cause AD. These cases are termed “familial AD” and the symptoms often develop in individuals in their 30’s, 40’s, or 50’s.
Individuals with early-onset dementia and their families face many challenges. First, just getting a diagnosis can be complicated. Many doctors do not think of dementia as a condition that can affect individuals in mid-life. Second, individuals in their 40’s to 60’s are often still working when symptoms start. Memory and cognitive problems can cause a decrease in the quality of their work, and they may lose their jobs before a diagnosis is even made. Third, financial and medical resources for individuals with dementia are designed for older individuals who have retirement or Social Security and Medicare benefits. Loss of income and insurance with no safety net can be devastating. Fourth, individuals at mid-life often have children who depend on them for emotional and financial support. Children with a parent diagnosed with early-onset dementia may experience anger, fear, shame, grief, and isolation due to the parent’s cognitive deficits. Finally, as the disease progresses, it may be difficult to identify community programs and residential facilities that are specifically designed for younger individuals.
The Alzheimer’s Association just published a report, “Early-Onset Dementia: A National Challenge, A Future Crisis” in June 2006. It includes information, descriptions and quotations from individuals with early-onset AD. It also gives recommendations to improve care for these individuals. You can get a copy of the report at the Alzheimer’s Association Web site (http://www.alz.org). The Web site also has Fact Sheets and other early-onset information.
The UW ADRC conducts research and provides clinical care to individuals with early-onset dementia. For more information, contact the ADRC at 206-764-2069 or 1-800-317-5382.