Challenges of Early Onset Alzheimer's Disease

Early onset Alzheimer’s disease strikes people in their 30s, 40s, 50s, and 60s.   While the majority of individuals in our country have late onset Alzheimer’s, the number of cases of early onset Alzheimer’s disease is increasing.  It is estimated that at least 10% of cases are early onset which equates to approximately 500,000 to 750,000 individuals at a minimum.

The need for services, activities, education, and support for those diagnosed with early onset Alzheimer’s disease, their care partners, and families, is very different from late onset Alzheimer’s patients.  The challenges faced by these individuals and their loved ones can include:

Difficulty obtaining an accurate diagnosis

It can often take more than a year from the time the person first sought medical attention for his/her symptoms to the time when a diagnosis of early onset Alzheimer’s was made.  Individuals can also be misdiagnosed due to their young age, which further delays receiving an accurate diagnosis.

Loss of employment and job-related income

As early onset Alzheimer’s disease impacts people under the age of 65, many individuals are still active in the workforce.  In fact, symptoms may first be noticed in the workplace.  The individuals may struggle with their usual job tasks, yet the reason for this change may not be understood by the person, the employer, or co-workers.  Due to a lack of understanding and awareness of early onset Alzheimer’s disease, the individual may be fired or leave their jobs voluntarily before getting a diagnosis.  This creates tremendous financial hardship and often a loss of insurance and benefits.

Individuals with early onset Alzheimer’s disease may still be raising children under the age of 18

Quite often when a person is diagnosed with early onset Alzheimer’s disease, they still have children at home under the age of 18.  In this situation, children often take on responsibilities that can include assisting with the parent, helping to take care of the house, and caring for younger siblings.  Very few programs exist to assist children of the person with early onset Alzheimer’s disease.

Lack of information provided on the disease at time of diagnosis

While early onset Alzheimer’s disease impacts each person differently, there are some commonalities as the disease progresses.  Not having information provided at the time of diagnosis is frustrating and inhibits the decision-making process.

The activities at many day centers and community programs are focused on the person with late onset Alzheimer’s disease

While these activities are wonderful they often do not meet the needs of someone of a younger age.  It is not uncommon to have someone with early onset Alzheimer’s disease connect more with staff members at the center than with other participants.  People with early onset Alzheimer’s disease may have recently left their job due to the disease, so they are looking for activities of a “work” nature.

Early onset Alzheimer’s patients are not eligible for services from Medicare or the Administration on Aging as they are under 60 years of age

Individuals with early onset Alzheimer’s disease can apply to receive Social Security Disability Income (SSDI), but they must have received a diagnosis in order to apply.  If accepted for SSDI, they then have a 2-year waiting period before being eligible for Medicare benefits.  This creates added stress and worry over how to meet financial obligations, as well as having access to additional resources and programs in their community.