As a person who is living with Alzheimer’s, I have very mixed feelings about how I should talk about it. I have become an outspoken advocate in the dementia arena, but I feel like I am always at odds with so many. And it is sometimes hard for me to decide what my message should be. Should it be about living life to the fullest or all doom and gloom about the horrible disease?

When I started my work as an advocate, I realized early on that if I painted too positive a picture of Alzheimer’s I would not get anyone to listen or sympathize. Then I ran into national pollster Frank Luntz and all that changed. He said if I wanted to change the trajectory around Alzheimer’s and force politicians to act, I needed to tell a different story.

On my next trip to Capitol Hill I told a story using the language that Frank recommended. To me it was very negative and scary – including death and devastation to name two. But this time when I made my plea for more dementia research funds to my members of Congress, I noticed a change. They not only listened but became supportive of the mission. That day I realized that if I truly want to bring change I cannot focus on the positives of living with Alzheimer’s, but must highlight the negatives. I also noticed that many others are following a similar path, and we are starting to change the dynamics of how we looked at dementia.

Many of my friends seem to think there are lots of positives to living with dementia. I am not sure that is true. Yes, I am doing things today that I would not have done if it was not for my Alzheimer’s. I have had the opportunity to speak out and travel, but does that make my life great living with dementia? I don’t think so. I think too many of us are in denial of what we are dealing with.

Even the best of times are fraught. Last fall I had the opportunity to meet former First Lady Laura Bush. I was so grateful to have the chance to thank her for her husband’s work and what they did in the dementia arena. But talk about a total screw up on my part! It turns out that in my mind I was thinking of her as Nancy Regan and the great work she and her husband did for dementia. My mind was somewhere else, and I missed one of the most import asks I could have had. That missed opportunity is something that will torture me for the rest of my life. 

Luckily, Mrs. Bush did speak out in support of dementia research that evening, but I can assure you it had nothing to do with me. She did know I had Alzheimer’s when I spoke to her. I so wish I could take that moment back and say what I really wanted to say.

My point is that while I may still be living life to the fullest, the sad truth is this disease is ugly in every way. Even the good moments are not what they could have been. While I need to think positively for my own sanity, I can never forget that I am not living life to the fullest in the way I dreamed I would.

I urge those living with dementia to speak candidly and forcefully about the devastation this disease has visited on our families and friends. This is the only way to bring the attention we need to this deadly disease.

Michael Ellenbogen is an International Dementia Advocate, a Board member of  the Dementia Action Alliance, and a Dementia Advocate for UsAgainstAlzheimer’s.