I Have Dementia. Do I Have to Quit My Job?

John Trevey on Oct 8, 2022

Our jobs give us purpose. They are the source of our livelihoods. A dementia or Alzheimer’s diagnosis might seem fatal to that purpose and livelihood.

How can we work if our memories don’t anymore?

But dementia is being diagnosed earlier and earlier, before people are exhibiting obvious symptoms and before they’re anywhere near retirement age.

What can people do when they’re in their forties and fifties and have received a dementia diagnosis?

The answer is different with each case. It depends on what stage of dementia you are in, what type of job you have, and what kind of support system you have.

On August 23, 2011, women’s basketball coach Pat Summit announced she had been diagnosed with early-onset Alzheimer’s, and she intended to continue coaching that year’s season at the University of Tennessee.

I Have Dementia - Pat Summit

I have dementia.

Her high-profile case put early-onset dementia in the spotlight, helping destigmatize the disease and proving that with the right team and protocols in place even someone with an early dementia diagnosis can continue to work.

Summit passed away in 2016, leaving a strong legacy of tenacity and hope in the face of early-onset Alzheimer’s.

Should I tell my boss about my dementia diagnosis?

Because dementia and Alzheimer’s are still largely misunderstood and stigmatized by the general public, it’s normal to hesitate in telling your employer about your diagnosis. Perhaps you’re several years from retirement and worried about losing your pension. Maybe you simply love your job. You feel like you’re losing so much else in life. You don’t want to lose that too.

Ultimately, it is your decision whether or not you tell your boss about your diagnosis. However, there are benefits to being transparent as early as possible.

First, the Americans with Disabilities Act provides protection for people with Alzheimer’s and other types of dementia in the workplace. So you shouldn’t be fired for having a diagnosis, and companies with 15 employees or more are required to make reasonable accommodations for people with mental disabilities, a category that dementia falls under. This goes for applying to new jobs as well. A potential employee should not discriminate against you based on your diagnosis.

Telling your employer will allow you to work together to make the accommodations needed for you to keep working as long as possible. These types of accommodations include:

Changing your schedule to give you time for rest and meal breaks.
Managing your agenda and calendar alerts so you don’t forget meetings and deadlines.
Adjusting your workload so you don’t take on too much stress.
Moving to a less senior position to avoid the stress of too much responsibility.

Of course, there are some jobs that would require your quitting earlier than others. Any jobs in which you are responsible for the life of someone else, such as a job in healthcare, a bus driver or an air traffic controller, will require you to step away before your symptoms risk interfering with your job.

Jobs that require you to learn new skills or that change on a daily basis will also be difficult to maintain. As Gary Kennedy, M.D., director of the Division of Geriatric Psychiatry at Montefiore Medical Center in New York said, “Dementia is always couched as a memory disorder, but in reality it’s a learning disorder. Old memories, old habits, old patterns remain until the dementia becomes far advanced. But you cease to be able to learn new information.”

The best jobs for someone with advancing dementia are jobs that are routine and stay the same most days or jobs where you’re being supervised by someone else, such as a teaching assistant.

What to do when you do quit your job.

1. Long-term insurance

When you and your employer decide it’s time for you to step away from your job due to your diagnosis, make sure you’re familiar with long-term disability insurance. This can provide monthly income when you can no longer work due to dementia.

Your employer may provide this through their insurance, or you can get it through a private insurance policy.

It’s important to consult with a legal professional or other expert who can make sure you get the best plan possible when you apply.

2. Maintain an active brain

Just because you have to quit your job doesn’t mean you have to fully remove yourself from society or that your life as you know it is over. It’s important for those with dementia to maintain a social life and partake in activities that exercise the brain.

This is a great time to return to an old hobby or pick up a new one you’ve always wanted to try. You can join groups specifically for those with dementia who have common interests and meet up at museums, coffee shops, or to exercise. To find a group like this near you, contact your local Alzheimer’s Association chapter.

Quitting your job on your own terms

As dementia is being diagnosed earlier and earlier, many will be able to continue working after they receive a diagnosis. Just because you have dementia, doesn’t mean you must immediately quit your job and all other life activities. Talk to your employer and share your diagnosis with your colleagues. You may be surprised at the support you receive.

“As dementia is being diagnosed earlier and earlier, many will be able to continue working after they receive a diagnosis.”
— John Trevey, Founder & Owner of Barton House Memory Care

Regardless, quitting your job on your own terms after developing a timeline for yourself based on your specific diagnosis and stage of the disease is always better than being forced to quit due to your symptoms interfering with your work.

A dementia diagnosis will ultimately lead to your needing to step away from your job but know that you have options. Researching them, preparing for your future, and leaving work on your own terms and timeline is empowering and will help you leave your job with a sense of purpose and hope for your future.

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Continuing an Environment of Caring in Times of COVID-19

Safety of Residents and Staff

As the coronavirus (COVID-19) pandemic continues to evolve, our communities are focused on keeping our Residents and staff safe while also maintaining Resident engagement and daily fulfillment. We are taking a cautious approach, balancing the highest level of safety within the least restrictive environment.

We will continue to follow and augment State and C.D.C. safety recommendations:

Screening: We screen every employee every day. We require our staff to complete a questionnaire (inquiring about possible symptoms, recent travel and exposure), have their temperature and oxygen level checked before entering the building. Staff are also required to clean their cell phones, keys and wash their hands while being observed. We monitor our Residents’ health closely with temperature and oxygen level checks at least twice a day. We help our Residents wash their hands throughout the day and encourage them to wear a mask or face covering.

Cleaning: We have enhanced our cleaning products with regard for their effectiveness in killing COVID-19 particles and proper sanitization and disinfection, using the EPA’s specific list of disinfectants for use against the coronavirus. We are using this list and training staff on how long cleaning solutions must be kept on a surface before wiping it off to ensure its effectiveness. We prioritize cleaning high-touch areas and horizontal surfaces, cleaning them several times a day.

Physical Distancing: We encourage 6 foot distancing between Residents and with staff unless they are providing direct care to a Resident.

Testing: We test all Residents and staff for COVID-19 every three weeks, and more as needed. Our nurses utilize a PCR test, which we send to a private lab to expedite results.

Physical Changes: We have installed ultraviolet lights in our air conditioners that supply air to the common areas of the houses. This method is believed to be helpful in killing bacteria that is cycled through the systems and pushed back into the house. We’ve also enhanced our HVAC filters to near HEPA levels, trying to add additional layers of protection to keep COVID-19 out of the building. Most importantly, air purifiers have been added to common areas and each resident room.

PPE: Staff members wear masks at all times and we encourage Residents to wear masks when outside their rooms. We also encourage physical distancing between our Residents. Staff wears additional protective equipment when deemed necessary while caring for our Residents. Staff are continually trained on when and how to use personal protective equipment (PPE).

Individual Needs Stay Paramount

The uncertainty surrounding COVID-19 affects us all. At our communities, we are not letting it stop us from safely offering a life well-lived. Above all, we are providing the utmost attention to the safety and well-being of our Residents. Our Program has always revolved around the individualized needs of each Resident and this has not changed during COVID-19. Residents are still able to connect with each other and staff while maintaining a safe physical distance. Weather permitting, we enjoy the patio and large backyard. We continue to keep our Residents engaged through cognitive, physical, recreational experiences. We offer enjoyment and connection throughout the day even during these unprecedented times.

Visitors

Since early March we have restricted facility access to prevent the spread of COVID-19.

Essential Visitors: Healthcare providers including physicians, home health, private duty services, physical therapy and hospice staff have not been allowed in the communities unless there is an acute, essential need for our Residents. These services continue as needed through FaceTime, tele-med and phone conversations. If physical access is absolutely necessary, the individual will complete our questionnaire and screening for temperature and oxygen stats. No one is allowed in the community if they fail to meet our screening criteria.

Families: We are happy to help schedule window visits, FaceTime, Zoom and phone calls with your loved ones based on what is allowed and prudent. To ensure the proper support from our staff, our visits are scheduled ahead of time.

Tours and Move-Ins

Tours: We recognize that regardless of the changes with COVID-19, your need for senior living hasn’t changed. For the safety of you, our Residents and staff, we are currently offering virtual tours where you can see our community, as well as meet our staff. Please contact our Community Relations Director to set up a virtual tour.

Move-Ins: We are accepting a limited number of move-ins (unless otherwise instructed by public health department). New Residents must be tested for COVID-19 prior to move-in. Upon admission, we will place a new resident in their room to quarantine as an additional precaution.

We will share community-specific information with residents and families as our quarantine measures continue to evolve with new information of COVID-19.

We are honored to care for your family member and loved one.

Comments we’ve received from our families during COVID-19.

“We appreciate all of your efforts. Your team clearly is a leader in the response to COVID. Thank you for keeping our loved ones safe.”

Joseph

“Thank you, thank you, thank you for ALL you have done and are doing to keep the residents and staff in a safe environment! The continuous learning and improvements empower caregivers and families to do better at home and in our communities.”

Tommy

“I appreciate you taking the time to update us and share them with my family living in AL, GA, VA, MD, FL…we are extremely grateful and comforted by your proactive and decisive measures! We’ll continue to keep you in prayer for health, safety and more.”

Rebecca

“In keeping with the parade theme you had, the employees there are super heroes. They are plowing forward in the midst of this horrible virus and taking care of their patients selflessly. I just wanted to acknowledge their bravery and dedication and thank them from the bottom of my heart for the goodness in their hearts and their dedication to their patients and jobs.”

Abigail

“Thank you! You locked down early & your diligence has paid well.

The Bader support group continues meeting once a month by Zoom. We all appreciate you so much. Everyone comments on how grateful we are that our parents are at Barton House!

We appreciate everything: sending us pictures, calls, alerts to bring supplies/clothes as needed, staying in virtual contact with hospice.
Blessings to each of you.”

Marsha

“Thank you for all y’all and all the staff are doing for my mom and the other residents. We truly appreciate your hard work.”

Carol