Telling Work

You are still doing your job, mostly. Deciding whether, when and how to tell your employer is one of the first real decisions after a diagnosis, and the order you do things in matters.

Do I have to tell my employer?

No. Your medical information is yours. But some protections only work once your employer knows, and the timing of that conversation matters.

There is no general legal duty to disclose a diagnosis to an employer. Some jobs are different: if you drive commercially, fly, carry a weapon, or work in another safety-sensitive role, there may be licensing or fitness-for-duty rules you need to check.

For most people, the question is not whether you must tell, but whether telling will help you keep working longer and leave on your own terms. Often it does.

What does the law protect?

The ADA protects you from discrimination and entitles you to reasonable accommodations if your employer has 15 or more employees. FMLA can protect your job during medical leave.

The Americans with Disabilities Act (ADA) applies to employers with 15 or more employees. Dementia that substantially limits thinking, concentrating or other major life activities generally counts as a disability. That means your employer cannot fire or demote you because of the diagnosis itself, and must consider reasonable accommodations that let you keep doing the essential parts of your job. The Equal Employment Opportunity Commission enforces it.

Accommodations people with early dementia have used include:

• Written instructions and reminders, and checklists for routine tasks
• Breaking large projects into smaller steps
• A quieter workspace with fewer interruptions
• A shift in hours to the time of day you work best, or fewer hours
• Moving away from tasks that rely heavily on fast recall, toward ones that use experience
• Extra training when systems or procedures change

The Job Accommodation Network, a free service funded by the Department of Labor, can suggest accommodations for your specific job.

The Family and Medical Leave Act (FMLA) gives eligible employees up to 12 weeks of unpaid, job-protected leave in a 12-month period for a serious health condition. You qualify if you have worked for a covered employer for at least 12 months and at least 1,250 hours in the past year, at a worksite with at least 50 employees within 75 miles. Leave can be taken all at once or in smaller blocks when medically necessary, and your employer must keep your health insurance going on the same terms.

When should I tell them?

Before performance problems pile up, if you can. Accommodations look forward, and a formal record of missed deadlines is hard to undo.

Many people wait, hoping to keep things private as long as possible. That is understandable. But if mistakes start to show up first, they can turn into warnings and performance reviews before anyone knows why. An accommodation request starts a process going forward. It generally does not require an employer to take back discipline that came before it.

Telling earlier also gives you more say in how the story is told, and more time to plan a transition rather than having one forced on you.

How should I tell them?

In writing as well as in person, to the right person, with a clear request. You are not asking for sympathy. You are starting a process.

• Decide who. Often human resources first, rather than your direct manager, so the request is handled formally.
• Say what you need, not only what you have. "I have been diagnosed with early Alzheimer's disease. I would like to talk about accommodations that will help me keep doing my job well."
• Bring a note from your doctor describing what is affected and what might help, without more medical detail than needed.
• Follow up in writing, so there is a record of the date you asked.
• Ask how your information will be kept confidential. Under the ADA, medical information must be kept separate from your general personnel file.

What should I check before I leave a job?

Your long-term disability insurance, your health coverage and your Social Security timing. The order you do these in can change what you receive.

• Long-term disability (LTD) insurance. If your employer offers it, read the policy before resigning. Many policies only pay for a disability that begins while you are still employed and covered. Quitting first can mean losing benefits you have been paying for. Ask HR for the policy document and talk to the insurer or a benefits attorney.
• Health insurance. If you leave, COBRA usually lets you keep your employer coverage for a time, at full cost. Compare it with a spouse's plan or the marketplace.
• Social Security Disability Insurance (SSDI). Early-onset Alzheimer's disease is on Social Security's Compassionate Allowances list, which fast-tracks the decision. You still need enough work credits, and the standard five-month waiting period before payments begin still applies. Medicare coverage starts after 24 months of SSDI benefits.
• Retirement accounts and pensions. Ask what happens to any employer match or pension if you leave on disability rather than resign or retire.

Getting this right is worth an hour with a benefits attorney or a financial planner who has worked with disability before. Many state bar associations run referral services.

What if I want to keep working as long as possible?

Then plan for it openly. Many people keep working for months or years after diagnosis with the right changes.

Keeping a job can mean structure, purpose, income and people, all of which matter after a diagnosis. Some people move to part-time, a different role or a consulting arrangement. Others stop and find purpose in other ways. Both are reasonable. The goal is that you choose it, rather than having it chosen for you.