Working with Dementia

Hi, I'm Mona. After returning from a leave of absence, I wasn't ready to walk away from work I loved. So my boss and I worked together to figure out what would help me stay.

I was seeing a speech therapist at the time, and she helped me think through accommodations that could really make a difference. We reduced my hours to about thirty to thirty-two a week, and I got to choose the hours that worked best for me — times when I was at my best. I also began working from home.

Some of my responsibilities changed, too. I used to facilitate meetings, but with some word-finding challenges, I moved into the role of scribe instead — still involved, just in a different way.

In my final year, I reduced my hours a little more, and I shared my diagnosis with my closest coworkers.

What I Want You to Know: The right accommodations don't have to be complicated. A speech therapist, an occupational therapist, or your health care provider can help you figure out what might work for you.

John Williams: Hi, I'm John Williams with the National Council of Dementia Minds. I'll be asking Chris some questions about workplace accommodations and strategies. Chris, what is the biggest misconception people have about reasonable accommodations?

Christian Lobb: I believe there's a misconception that a reasonable accommodation has to be expensive or elaborate or complicated. It doesn't. It can be as simple as getting permission to take notes during meetings, or asking a supervisor to help you create a checklist of things you need to do throughout the day, so it doesn't have to be all that complicated.

John Williams: Can you give us a few examples of accommodations that might help someone living with dementia?

Christian Lobb: Yeah, sure. In addition to asking for the ability to take notes or make a checklist, it can be things such as using technology for reminders, maybe calendar reminders that tell you when certain tasks have to be completed by another. Another fairly common accommodation is a modification to the employee's workplace schedule.

It's often the case where a person's health condition manifests itself in a way where they are more productive in the morning, say, than later in the day, or vice versa. So, recognizing that and asking for a modification to your work schedule could be very helpful in helping you maintain your job.

John Williams: Is that something you have to ask for each week or each pay period?

Christian Lobb: Well, I mean, it depends on the employer and what the process is for scheduling. If you get a new schedule every couple of weeks, you should be in touch with your employer and supervisor to discuss your next schedule. If you're a standard 9 to 5 Monday through Friday employee, probably one discussion would serve to modify your schedule, but make sure it's documented.

You might get a new supervisor, and they might not know what your accommodation is. So, it's also important to keep, you know, your current supervisors informed about the accommodation.

John Williams: So, is it, would it be okay for me to email my employer to cover this schedule as a form of documentation?

Christian Lobb: I think an email would be an excellent way to document that you've not only requested the accommodation, but to also preserve whatever the response of your employer is.

John Williams: Many people worry about saying the wrong thing when talking with their employer. Are there things they should avoid saying or doing when discussing a dementia diagnosis or requesting an accommodation?

Christian Lobb: Well, I think overall the employee should approach it as an interactive process as the EEOC recommends, meaning it should be a cooperative conversation. The employee should avoid being confrontational, but should avoid personalizing things with the supervisor. I mean, you're just now informing your supervisor of your diagnosis.

They have to process that. So in general, it's best not to be confrontational. And also you don't have to go into your entire medical history. Really, you need to focus on how parts of your diagnosis affect job duties that you have and sort of leave it there.

John Williams: What's the most important takeaway about workplace accommodations?

Christian Lobb: I think mainly that the employer has a duty to accommodate an employee, as long as that accommodation does not impose an undue hardship, meaning it's not too expensive, or require reorganizing the entire workplace, that there are as many little solutions to help you do your job as there are ideas. So it encourages creativity.

Be creative in thinking about accommodations.

John Williams: Chris, thank you for speaking on accommodations.

Christian Lobb: You're welcome.

Talking with your employer about a dementia diagnosis is a personal decision. In many cases, disclosure is not immediately required. However, if you need a workplace accommodation to perform your essential job duties, it is generally advisable to begin that conversation before performance issues arise.

The ADA encourages an interactive process—a collaborative discussion between you and your employer to identify reasonable accommodations that can help you succeed.

Preparation is important. Think through your goals, write down your questions, review your employer's accommodation procedures, and consider bringing documentation if appropriate. If your workplace has a human resources department, they can often help facilitate the process.

Keep notes of important conversations and document any agreed-upon accommodations. The most successful discussions are respectful, specific, and focused on finding practical solutions that work for both you and your employer.

Asking for support is not a sign of failure. It is often the first step toward continuing to work successfully and confidently.

Many people wonder what information an employer is allowed to request after an employee discloses a dementia diagnosis or asks for a workplace accommodation.

In some situations, an employer may ask for medical documentation that supports the need for a reasonable accommodation. The request should be related to your job duties and limited to information necessary to evaluate the accommodation.

An employer may also request an independent medical evaluation in certain circumstances, particularly if additional information is needed or there are legitimate workplace safety concerns.

You may also wonder whether your employer can ask for updates about your condition. In general, employers should focus on your ability to perform essential job functions rather than seeking unnecessary medical details.

Medical information should be treated confidentially and shared only with those who have a legitimate need to know. In most workplaces, accommodation information is handled by Human Resources and appropriate supervisors rather than shared broadly with coworkers.

If you are unsure about your rights or believe you are being treated unfairly, consider speaking with an attorney or contacting the Equal Employment Opportunity Commission, also known as the EEOC.

Understanding these expectations can help you approach conversations with confidence and participate in the interactive process as an informed partner.

John Williams: Hi, I'm John Williams with the National Council of Dementia Minds. I'll be asking Chris some questions about workplace accommodations, what your employers should expect from you and what you should expect from your employer. Chris, if I ask for a workplace accommodation, can my employer ask me to provide any medical documentation?

Christian Lobb: The employer is entitled to ask for medical documentation to verify the health condition that you're seeking an accommodation for. So yes, they can ask for medical documentation.

John Williams: What about confidentiality? If I share information about my diagnosis, can it be shared with everyone at work?

Christian Lobb: No. The employer is under a duty to maintain confidentiality, as much as it's practical, with respect to any medical information you share or to any accommodation granted. So really the information should only be shared on a need-to-know basis in the workplace.

John Williams: What are your thoughts about me sharing my diagnosis with my coworkers?

Christian Lobb: Well, you know, it depends how close you are with your coworkers. Are they part of your social life? But in general, it would be best to just limit those conversations to your supervisor and HR as needed in the course of seeking an accommodation.

John Williams: At what point should someone consider talking with an attorney or another trusted professional?

Christian Lobb: An attorney can be a valuable resource at a very early stage in planning to approach your employer about disclosing your diagnosis and seeking an accommodation. An attorney who is versed in the ADA or your state's local disability statutes should be able to give you guidance and pointers on how to approach that conversation, what your demeanor should be during that conversation, and the types of things that would be reasonable to ask for.

So, at that early stage, it's important. It would also be highly recommended to speak with an attorney if your employer either gives you any pushback, refuses to discuss accommodation with you, or all of a sudden changes the terms and conditions of your job, such as your schedule, your hours, your job duties.

Those would be times then to go to an attorney and to consult on what protections are afforded you under the ADA.

John Williams: Do you think it's a good idea if I keep any documents that maybe my supervisor or employer provides to me, so I might be able to review them with an attorney?

Christian Lobb: Absolutely. And really, your employee handbook, any policies, and then any communications you have with your supervisors regarding your disability or regarding your requests for an accommodation. All those documents should be maintained and gone over with your attorney so that you can formulate the best strategy.

John Williams: What's one piece of advice you would leave our viewers with?

Christian Lobb: The main piece of advice is the law is there to protect you. And so don't fear going to an attorney.

And always, I would say, lean into communicating with your supervisor or HR rep regarding issues you're having in the workplace, how those issues are linked to your health condition or diagnosis, and also continuously exploring accommodations that can help you be successful in your job.

John Williams: Chris, thanks for answering the questions today about speaking with an employer about accommodations.

Christian Lobb: Thank you.

Court cases can help illustrate how disability laws apply in real-life situations. One example involves Wells v. Mutual of Enumclaw, a case concerning an employee with early-onset dementia.

Mr. Wells informed his employer about his condition but did not specifically request a reasonable accommodation. After workplace difficulties arose, he argued that his employer should have started the accommodation without a formal request. The court disagreed. It concluded that, while no special words are required, an employee generally must communicate that an accommodation is needed before the employer has a duty to engage in the interactive process.

The lesson is simple: if dementia is affecting your work and you believe support would help, do not wait until problems become serious. Consider discussing your needs early and clearly with your employer.

Every situation is different, and this case is not legal advice, but it highlights the importance of communication, planning, and requesting assistance when appropriate.

Chris Lobb: No, not at all. The way the courts phrase it is, you don't need to use magic words to request an accommodation, but you do need to be clear that you have a diagnosis and that you need some support to assist you with your job functions. That's what you need to communicate. Okay, good.

John Williams: As we wrap up this discussion, what message would you like people living with dementia and their care partners to take away?

Chris Lobb: Just that the law is there to protect you, and that holding on to your job could be a key pillar in coping with your diagnosis. So, it's important for you to take control and to take the reins in terms of communicating with your employer and determining whether or not you need some support or accommodation on the job. John Williams: Hi, I'm John Williams with the National Council of Dementia Minds. I'll be asking Chris some questions about the Wells Court of Appeals decision. Chris, you shared the story of the Wells case. What's the single most important lesson viewers should take away from that case?

Chris Lobb: Communication. It's important, as an employee with a diagnosis to communicate how your diagnosis affects or may affect your job performance, and to let your employer know that you may have need of an accommodation. Because what the case law says is it's not up to the employer to determine that on its own, it's the employee, the employee who has the burden of bringing that issue up with the employer.

John Williams: Does someone have to use the words reasonable accommodation or make a formal legal request with their employer?

John Williams: Chris, thank you for answering the questions about the Wells case and your recommendations for people living with dementia.

Chris Lobb: It's been a pleasure, John.

John Williams: We hope these conversations encourage viewers to plan ahead, understand their options, and seek trusted guidance whenever they need it.

A dementia diagnosis does not automatically end your career or eliminate your workplace rights.

Laws such as the Americans with Disabilities Act may provide important protections for qualified employees with disabilities. Depending on your circumstances, you may be entitled to reasonable accommodations that help you continue performing your job successfully. The decision about whether and when to disclose a diagnosis is personal. However, if you need workplace support, starting the conversation early and participating in the interactive process can often lead to better outcomes.

Take time to learn about your rights, prepare for important conversations, and seek professional guidance when needed. You do not have to navigate these decisions alone. Most importantly, remember that many people living with dementia continue to make valuable contributions at work and in their communities. With planning, communication, and appropriate support, it may be possible to continue working with confidence and dignity.

We hope this information helps you make informed decisions about your future.