Testimonials from People with Dementia

The following testimonials are from people with dementia who have participated in live or online To Whom I May Concern programs. Some participants have asked that their last name not be used in order to preserve privacy.

To Whom I May Concern®was an amazing experience for me. When I first heard of it, I had just been diagnosed with early-onset Alzheimer’s disease and was floundering—not feeling understood by my doctors, family or friends. Maureen is a master listener/facilitator who brought a diverse group of us together from around the country, each of us with a type of dementia, to talk online about our fears, hopes, concerns, and experiences. She then wove our thoughts into a script for us to perform. It was a cathartic.

A diagnosis of dementia can be very lonely. To Whom I May Concern® gives people with dementia a voice and a sense of being part of something bigger, a chance to belong during a time when one feels adrift. Even though we have our struggles, the members of our group are still friends two years after our performance.

–Mary, Salt Lake City, UT

‘To whom I may concern’

Amazing and empowering! Sharing really is caring!

It was so amazing to meet and share with other people who have a similar diagnosis and knowing you are not alone.

To Whom I May Concern really helped my confidence, it helped me explain what was going on in my mind to my family, it gave them, my family, an insight I could never have achieved on my own.

The bond and closeness you feel for others that have the same unseen illness is one that you can’t explain till you’ve been there.

We do have a voice and with the help of this project it can now be heard, I hope it helps people in the same way it helped my family and myself understand dementia a bit more.

–Chris Roberts (Wales, UK), 53 years young with mixed dementia, and living well with it!

As a person living with Alzheimer’s, I had the opportunity to be part of To Whom I May Concern. The main reason I had joined was to educate myself on what others were doing to advocate and to help those with dementia. I was extremely surprised by how our social meetings with so many from around the world turned into a creative script that would help educate others. It was educational, fun, depressing and funny.

To Whom I May Concern helped many people to have a purpose that they were not even aware of. The audience was able to see a side that most were unaware of. I looked forward to her second production which I believe was very good. It is my hope that program can continue on a wider scale so that the public can be educated while others who are living with this disease see that they are still capable.

–Michael Ellenbogen, PA

When I first read the lines of “To Whom I May Concern,” it brought tears to my eyes. I was so moved by it. Although I was reading the lines of another character, I felt it was really about me…. And in fact, it was.

I think about that play, even now, more than two years after I did that performance. It tells a story from the eyes of people who have been diagnosed with the disease. It lends us a voice.

–Scott Russell, CT

To Whom I May Concern is really good for people like me at this stage to be doing things like this. When we finish the play you can see that the audience has been moved and also educated about what we go through.

Reading about Alzheimer’s is different from hearing about it from the people diagnosed.

And the question and answer time after the play is golden. We can focus on what people need to know.

We put a face to the diagnosis. They don’t see faces like ours, just the ones they see on TV. People then leave the play with a different understanding and might be more able to recognize the signs of early dementia in people they know.

–Joyce Simons, New York, NY

After 20 years in social work, I became unable to manage my job. I didn’t know what was happening to me. The change resulted in depression and anxiety. When I developed migraine headaches, I consulted a neurologist who suspected Pick’s disease, a rare form of dementia. A battery of tests confirmed his diagnosis.

Unaware there was help to be found, I became withdrawn and fearful of leaving my home. When I found an online support group for people with dementia, a new world opened up. I was not alone; there were others successfully living with memory loss.

Through the support group I joined To Whom I May Concern. Via the Internet, I connected to four other people from different cities, all living with some type of dementia. I could stay at home and become involved at the same time. This seemed perfect for me.

Script development was the most fun of all. There was so much enthusiasm that we were talking over each other, trying to express pent-up thoughts and feelings. From all the chaos, Maureen was able to form a wonderful play in which we were the actors.

The process was life-changing. It was no longer about what I had lost, but about what I had to offer. Professionally I was an advocate for people with intellectual and developmental disabilities. I decided there was a need for my talents within this world of dementia. I’m one of the founders of Dementia Alliance International.

I journey forward, hoping to leave footprints for others to follow. Though my progression has been very slow, I unwilling to lose another day waiting to die from dementia.

–Janet Pitts, Oklahoma City, OK