Should You Stop Working? Guidance for People Living with Early-Stage Dementia by Marie Marley
Note: This article is directed toward people living with early-stage dementia. If you are a care partner, please pass it along to your loved one after you read it.
Jeff Borghoff had been working as a Sr. Technical Architect for eight years. His job included, among other duties, meeting with clients. When he was 50 years old, he began to notice memory and concentration changes in himself. Jeff’s symptoms continued worsening, and by age 51 he was no longer able to carry out his professional responsibilities, including participating in those meetings.
He talked with his employer and requested a transfer to a position with fewer and less stressful duties, even though he’d have to take a salary cut. Unfortunately, management was unable to meet that request; there was no position to which they could transition him. At that point Jeff went out on medical leave, which lasted a full year.
Jeff’s physician recommended he not return to work at the end of the year. He said that job stress and further anxiety could worsen his cognitive problems. Finally, Jeff realized that even if his employer could find a less taxing position from him, it would pay less and thus lessen the amount of his Social Security Disability Income (SSDI) payments, so he didn’t return to work.
This had serious consequences for Jeff and his family. First was Jeff’s loss of employment, with which he had always identified. He had lost one of his main purposes in life.
Second was that the family income declined significantly. His SSDI payments were only 14% of what he’d previously earned, and those payments are taxable income. This required his wife to take on a second job to make ends meet, including the expense of putting their three children through college.
Deciding to stop working is one of the most difficult decisions you’ll ever have to make as a person with early-stage dementia. Sometimes the choice will be up to you. In other cases, the decision may be taken out of your hands—you may simply be let go.
Americans with Disabilities Act (ADA)
Description of ADA: The Americans with Disabilities Act (ADA) was first signed into law in 1990 and was amended in 2008. The ADA is one of America’s most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life—to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services.
ADA’s Definition of “Disability:” The ADA defines “disability”, with respect to an individual as (A) a physical or mental impairment that substantially limits one or more major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment. Most people living with dementia meet one or more of these conditions, and, thus, are covered by the law.
Under the ADA, employers are required to offer “reasonable accommodations” to help people with disabilities continue their employment for as long as possible.
Accommodations: Sometimes accommodations are successful in allowing an individual living with dementia to continue working, at least for a while. Oher times, due to the nature of the person’s job or the severity of their disability, accommodations don’t help.
Even when accommodations are successful, for the person living with dementia, a progressive disease, the time will probably come when he or she can no longer work. And sometimes, because of the nature of the employee’s job, there simply are no possible accommodations that would allow continuing employment.
For sample accommodations for people living with dementia, see the Job Accommodations Network PDF.
Benefits of Continuing to Work: Perhaps the most important benefit of continuing to work is the satisfaction of being employed and contributing to society. Some people identify strongly with their professional accomplishments, which contribute to a healthy sense of self-esteem.
Other benefits include: having structure in one’s life; spending time in a venue conducive to socialization; retaining a salary—to contribute to household income; maintaining health insurance and other benefits, thus avoiding the high cost of purchasing these on the open market; and preserving and/or increasing pension benefits and Social Security Disability Insurance payments.
Benefits of Stopping to Work: One of the important reasons people with dementia may stop working is so they have free time to enjoy life to the fullest while they are able to do so. Another reason is simply to avoid the disadvantages listed below.
Disadvantages of Continuing to Work: An important disadvantage of continuing to be employed is living with the stress of trying to perform one’s job despite having a disability.
Other disadvantages include: possible ostracism from other employees for not carrying one’s share of the workload, especially when accommodations are made and some duties may be given to others; having to work long hours (some people with dementia end up working evenings and weekends) to keep up with assignments; the embarrassment of making mistakes, especially if they are in conjunction with simple tasks; missing deadlines; not showing up for meetings; or coming to meetings late; and, finally, the embarrassment of possibly being let go.
Conclusion: Deciding whether to continue working is a highly personal decision that is best made after careful consideration of all the pros and cons. It can also be helpful to consult your family, physician, employer and/or other person whose judgment you trust.
For more information on this subject, see: Chicago Tribune article: “Alzheimer’s Forces Workers to Make Tough Choices” and The Society for Human Resources article: “Coping with Cognitive Decline at Work.” For information on how a person’s decision to stop working can affect his or her care partner, see Alzheimer’sEurope.com.
Contributors: The following people, all living with dementia, were interviewed for this article: Susan Balkman, Jeff Borghoff, Truthful Kindness (Tru), Harry Urban, and John Wood. The article was reviewed by Susan Balkman.
Marie Marleyis the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Care partners say it helped them a lot. Former care partners say they wish they’d had it when they were care partners. Marie’s website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s care partners. She lives in Kansas City with her two Shih Tzus, Joey and Christina.