Working with Dementia

Receiving a dementia diagnosis can bring up many questions about work, finances, health care and planning for the future. If you are employed, you may wonder about your rights, your responsibilities, and what supports or accommodations might be available to help you continue working. These videos provide practical, easy to understand information to help you as a person living with dementia and your care partner understand workplace rights and available options.

Our goal is not to provide legal advice or to tell you what decisions to make. Instead, we want to help you understand key concepts, identify questions to ask, and feel more confident as you make informed decisions that are right for you and your unique situation. To help guide this discussion. We're joined by employment law attorney Christian, Chris, Lobb, who has extensive experience helping people understand workplace rights and navigate employment related issues.

Chris will explain important legal protections in practical considerations in a clear, accessible and easy to understand way. Let's get started.

Hi, I'm Mona. I spent many years working in the research department at a major university.

After my diagnosis, I took a three-month leave of absence. When I was ready, I returned to work — and I kept working for four more years before I retired.

Staying employed wasn't only about the work itself. It was about protecting my health insurance, my retirement contributions, the benefits I had spent years building. I wasn't ready to give those up.

My boss was also a good friend, and when I shared my diagnosis with her, she was incredibly understanding. She encouraged me to stay on, and for the first three years, she was the only person at work who knew.

If you're wondering whether continuing to work is possible for you, know this: it can protect more than just a paycheck. It can protect the security you've already worked hard for.

What I Want You to Know: Continuing to work, even for a period of time, can help protect benefits like health insurance and retirement contributions that matter for your future.

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.

Hi, I'm Jay. I worked as an assistant city manager for many years — work I loved, alongside people I trusted.

When it came time to tell my boss about my diagnosis, I was nervous. I didn't know what to expect. My HR person went with me to that meeting, and I wasn't alone.

My city manager couldn't have responded better. His first question was simply, “How can I help?”

I ended up staying another four or five months. I was even part of hiring my own replacement — helping choose who would carry the work forward. It gave me a real sense of closure, on my own terms.

Years later, I'm still in touch with so many people from that team. Those relationships didn't end when I retired. If anything, they meant even more.

If you're nervous about telling your employer, you're not alone in that feeling. But know this: a good employer wants to help you find the best path forward, together.

What I Want You to Know: Telling your employer can feel scary, but you don't have to do it alone — bring HR with you, and give a good employer the chance to ask, “How can I help?”

Hi, I'm Dona. I worked as an Accounting Manager at a community bank — a position I had worked hard to earn, just one year before my diagnosis.

When I was diagnosed, I made a decision early on: for a while, only my CFO would know.

It wasn't about hiding. It was about protecting myself. I didn't want ordinary mistakes — the kind anyone makes — to suddenly get blamed on my diagnosis. So, my CFO and I agreed to keep it between us while I figured out what I wanted to do next.

If you're thinking about who to tell and when, know that you get to decide that. There's no rule that says everyone has to know right away.

What I Want You to Know: You get to decide who knows about your diagnosis, and when. Protecting yourself from judgment while you figure things out is a reasonable and valid choice.