Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, and causes loss of memory, changes in behavior, and deficits in language skills. There is no cure, and its cause and progression are poorly understood. Alzheimer’s disease is the most common cause of dementia, or loss of intellectual function, among people aged 65 and older. Early-onset Alzheimer’s is an uncommon form of dementia that strikes people younger than age 65. About five percent of people with Alzheimer’s disease have the early-onset form.
It is estimated that approximately 200,000 people in the United States have early-onset Alzheimer’s. Most victims are in their 40s and 50s when the disease strikes. This can be devastating because often, they are in their prime earning years and are still raising their families. Some are even caregivers themselves.
Most types of early-onset Alzheimer’s disease are the same, but there are a few small distinctions:
- Common Alzheimer’s disease. The majority of people with early-onset Alzheimer’s disease have the common form of the disease. It progress in the same way as it does in older people with Alzheimer’s disease.
- Genetic Alzheimer’s disease. This form is extremely rare. A few hundred people worldwide have genes that directly contribute to Alzheimer’s disease. When caused by deterministic genes, it is called “familial Alzheimer’s disease,” and many family members in multiple generations are affected.
Since health care providers generally don’t look for Alzheimer’s disease in younger people, getting an accurate diagnosis of early-onset Alzheimer’s can be a long and frustrating process. Symptoms may be attributed incorrectly to stress or there may be conflicting diagnoses from different health care professionals. People who have early onset Alzheimer’s may be in any stage of dementia – early stage, middle stage, or late stage — at the time of the diagnosis. The disease affects each person differently and symptoms vary.
The average time of survival after a diagnosis of early-onset Alzheimer’s varies but generally is 8 to 10 years. Many people with early-onset Alzheimer’s require institutionalization.
Social Security Administration POMS: DI 23022.385 — Early-Onset Alzheimer’s Disease
At present, the only way to definitely diagnose Alzheimer’s is through a brain autopsy. While a person is alive, physicians can make a correct diagnosis of Alzheimer’s about 90 percent of the time. The diagnosis of early-onset Alzheimer’s is based on the combination of clinical and family history; neurological, cognitive, or neuropsychological examination; and neuroimaging.
Early-onset Alzheimer’s is listed under the Social Security Administration’s (SSA) Compassionate Allowance Program, which was launched in 2008 to expedite certain disability claims. Applying for disability benefits under the Compassionate Allowance Program requires the same procedure every applicant must follow when applying for SSA disability benefits; however, you will be notified if your condition is being considered as a compassionate allowance.
To establish disability under the guidelines of the SSA, based on your diagnosis of early-onset Alzheimer’s, you will need the following:
- Clinical information documenting a progressive dementia. This is critical and required for disability evaluation of early-onset Alzheimer’s. Records from your treating primary physician, neurologist, or psychiatrist are preferable.
- An Activities of Daily Living Report or a similar report completed by relative or caregiver.
- Documentation of dementia by standardized testing such as the Clinical Dementia Rating (CDR), MMSE, or the equivalent. This is helpful but not required.
Your representative may be able to help expedite your disability claim if you have a diagnosis of early-onset Alzheimer’s disease.