While dementia most often affects older adults, people as young as 30 have been diagnosed with Alzheimer’s disease or other dementias. Alois Alzheimer first described the disease named for him in 1906. His pioneering descriptions of symptoms (loss of cognitive function) and abnormal brain pathology (plaques and tangles in brain tissue) were based on observations and autopsy of a patient in her 50s. Today, life expectancy has increased, so more people are living to an age when the symptoms develop. Because we usually see older adults with memory loss and other cognitive problems, Alzheimer’s disease and other dementias are popularly considered to only affect older adults. This is not always the case.
An estimated 5 to 10% of persons diagnosed with Alzheimer’s develop the disease before age 65. The impact is significant for patients who are at the peak of active career and family life. The Alzheimer’s Association estimates that 220,000 to 640,000 Americans have early-onset Alzheimer’s disease or other dementias. Exact numbers are difficult to determine, because early-onset dementias are often misdiagnosed. Physicians may rule out dementia because the patient is younger than expected and appears healthy. Sometimes early-onset dementias are diagnosed as depression or as symptoms of stress.
Compared to later life dementia, early-onset dementia is more commonly an inherited disease. Up to half of the people with early-onset Alzheimer’s disease have had another family member with the disease. Genetic testing can reveal the presence of three known gene mutations that are often associated with early-onset Alzheimer’s disease.
Alzheimer’s disease is the cause of about 30% of early-onset dementias. Other forms of dementia may also occur in younger adults. In frontotemporal dementia, or FTD, the damage to the brain is localized in the frontal and/or temporal lobes. FTD is most often marked by changes in personality or behavior, and/or the loss of language skills. In dementia with Lewy bodies, a build-up of protein called alpha-synuclein is distributed throughout the cerebral cortex. People with Lewy body dementia may exhibit movement disorders similar to those seen in Parkinson’s disease. They may also have difficulty paying attention or understanding visual material. Vascular dementia, associated with problems of blood flow to the brain, can also occur in younger adults. Symptoms of vascular dementia are variable, and may include difficulty with organization, communication or motivation.
Early-onset dementia patients make an important contribution to research. They are often in good health otherwise, and so present fewer complicating factors as research subjects.
Clinical research requires large numbers of volunteers who will agree to help investigators collect information. Clinical trials test interventions that may help to diagnose, prevent, treat or cure the disease. OHSU’s Layton Center is currently conducting trials to test the efficacy of the antibody bapineuzmab to affect buildup of amyloid in the brain. These trials so far show promising results. The antibody appears to diminish the accumulation of the harmful amyloid plaques that are a hallmark of Alzheimer’s disease. According to The Layton Center’s Dr. Joseph Quinn, once a clear relationship between the antibody and amyloid plaque accumulation is established, specific drugs may be developed to remove or prevent the toxic plaques that are associated with brain cell death. Among the several studies underway at The Layton Center, researchers detail the clinical history of patients to find out more about the progression of the disease. They may also use MRI (Magnetic Resonance Imaging) to study changes in the aging brain, and how such changes may affect cognition. People who agree to participate in these trials and procedures as research subjects make an important contribution towards future treatment and prevention.
Her husband Mark explains that Chris had always felt it was important to participate in research, to do what she could to help find a cure: “Chris’ family has early onset Alzheimer’s genetically, so we were always aware of the possibility. Her mother passed away at the age of 53 and her only sister at the age of 49. She had been participating in research since early in the 1990′s. She was never ‘diagnosed’ until [later, when] she had problems getting to her doctor appointments.”
Though Chris began participation in research studies very early in her disease, she was not able to complete the most recent study. As Mark recalls, “for Chris, it was difficult as we neared the end of the clinical trial, because with the changes in [her] behavior doing the required MRI’s was no longer possible. Dr. Quinn was great in helping us make the decision to end our participation just shy of the completion of the clinical trial.”
Over the last five years, Mark Donham has supported Chris in every way possible as they coped together with her decline. Throughout this time, he has felt that their involvement with the Layton Aging and Alzheimer’s Disease Center provided an important way for their painful journey to hold meaning and hope for the future. As Mark says, “It was good to feel like she was helping to find treatments, and hopefully a cure, for this terrible disease.”
Written and published by the C. Rex & Ruth H. Layton Aging & Alzheimer’s Disease Center
Mark has been documenting his experiences during his time as a caretaker for Chris. He has made a number of videos that we will post as a series in effort to help caregivers around the world. Since this article was written, the inevitable conclusion of early-onset Alzheimer’s arrived for Chris. Christine Donham of Lake Oswego, Oregon passed away Jan. 31, 2011, of complications due to early-onset Alzheimer’s disease. She was 54.
The C. Rex and Ruth H. Layton Aging and Alzheimer’s Disease Center at Oregon Health & Science University (OHSU) is a comprehensive research, clinical care and education center directed toward identifying the causes of Alzheimer’s disease and related disorders. The Center is one of twenty-nine NIA (National Institute on Aging) Alzheimer’s disease centers in the United States and is the only one in Oregon. In order to provide a brighter future for families, the Center is dedicated to conducting innovative, forward thinking research and is recognized as one of the best venues for this work.
Please help continue Chris’s work with a donation to OHSU’s Layton center through the OHSU Foundation at this link: