An Individual Perspective from Someone with Experience

The insights of those who have been diagnosed with early-onset Alzheimer’s are invaluable in trying to better understand the disease and its impact.  This article details an interview with a man named Jeff who was diagnosed in his early 50s.  Below are some of his ideas and experiences that I found to be most salient:

  • Jeff was initially misdiagnosed and had to seek help from multiple doctors at multiple hospitals before receiving a diagnosis of Alzheimer’s disease.  He notes that “the issue was that each doctor was trying to help or diagnose me in their specialty.”  He believes that physicians should be required by law to receive education on how to more effectively diagnose Alzheimer’s disease.
  • He highlights the fact that symptoms can vary widely among individuals; for Jeff, his memory difficulties were less noticeable compared to issues with “cognition, processing of steps, multitasking, and balance.”
  • Jeff did retire from his job following his diagnosis, but he has been able to use the skills he’d accumulated from years in an IT career to “work on websites and social media and wrap that into an Alzheimer’s awareness and advocacy lifestyle.”
  • Being an advocate for other individuals with Alzheimer’s disease has given him a sense of purpose; he has been running monthly “Memory Cafes,” where people with dementia and their supporters can gather together for fun activities.  He feels that everyone diagnosed with dementia should understand that they can still contribute and live a purposeful life.

Undiagnosed Alzheimer's Disease at Work

The vast majority of Alzheimer’s disease occurs in individuals over the age of 65.  This means that, when someone in their 40s or 50s goes to their doctor describing memory difficulties, Alzheimer’s disease is unlikely to be at the top of the differential.  Similar symptoms can arise from other more common causes including depression, alcohol abuse, vitamin deficiencies, and some medications.

It can be a long and winding journey to receiving a diagnosis of early-onset Alzheimer’s disease, but it is important to start the process early.  The article below chronicles the unfortunate story of a woman who had undiagnosed early-onset Alzheimer’s disease and was fired from her job due to poor performance at work.  Because neither this woman nor her employer was aware of the reason behind her behavior changes, she missed out on possible accommodations that may have kept her employed as well as disability benefits.  Having to dip into savings and retirement accounts to support oneself after a diagnosis of early-onset Alzheimer’s disease can make an already devastating diagnosis all the more burdensome.

As the article highlights in its conclusion, employers can help prevent these situations by fostering a culture where employees feel that they can communicate openly, be honest about their struggles, and ask for assistance when needed.

Job Accommodations for Early-Onset Alzheimer's Disease

"Early-onset" or "younger-onset" refers to Alzheimer's disease that occurs in people under age 65.  While this form of Alzheimer's disease can develop between ages 30 and 40, it is more commonly seen in people in their 50s.  Those who develop early-onset disease may still be employed, and they may require accommodations at work depending on how the disease is affecting their ability to perform their job functions.  Symptoms of Alzheimer's disease (both early-onset and late-onset) vary among individuals; some of the first symptoms to appear may include losing track of the date, asking the same questions multiple times, trouble finding the right words in conversations, and poor judgment.

The article below provides a helpful list of questions for employers to consider when exploring possible accommodations as well as an extensive list of accommodation ideas and details on each type of accommodation.

Can I Keep Working With Early-Onset Alzheimer's Disease?

The questions of whether and/or for how long to continue employment after a diagnosis of early-onset Alzheimer’s disease are complex and multi-faceted.  The article below puts forth a few key considerations for both employers and employees to keep in mind when these circumstances arise:

  • Would a mistake at work put another’s health and safety at risk?  This question is particularly important for jobs such as nurses and physicians, EMTs, airline pilots, police officers, and truck or bus drivers.
  • What level of responsibility does the position entail?  Does the employee hold the financial livelihood of a business or of clients in his or her hand?
  • Are the employee’s job duties focused more on innovation and adaptation or on repetition and predictability?  Because early signs of disease can include forgetting recently learned information, difficulty solving problems, and changes in judgment, individuals will likely find it easier to continue working in the latter types of jobs.

Once these topics are discussed, employers and employees can move on to next steps, whether that involves job restructuring and accommodations, looking into disability benefits, or another path.