Conferencing in Dementialand (or What You Learn by Observing Minglers)

I’ve spent the last few days at the Alzheimer’s Association International Conference in Washington, DC. You may have seen some news articles discussing the research that was presented at the conference. Although the conference had some research on psychosocial therapies and technologies to help people with dementia, it’s not surprising that perhaps that biggest headline to come out of the conference pertains to a drug that could possibly slow the progress of Alzheimer’s in the early stages of the disease—if it pans out. And I’m cautiously optimistic that it will have a significant benefit for some individuals with the disease. If you think I’m tempering my enthusiasm, you’re right. I often do this in response to the media overstating the effectiveness of a potential treatment that may be years away from being available anyway.

Sometimes I hear individuals with Alzheimer’s and care partners make comments about how slow progress is in the area of Alzheimer’s research. And I can’t blame them. We’ve been slow to go to battle against dementia in general. Funding has been limited. We’ve traditionally viewed Alzheimer’s as an “old person’s disease” and we’ve thought of better ways to spend our money than on our aging population. Furthermore, protocols to ensure the safety of any drugs and therapies are stringent to make sure treatments are safe for humans before they are used. And, sure, this means longer time periods before we can try therapies with individuals who could benefit from them.

A man with Alzheimer’s told me recently that he’s given up hoping that there will be an effective way to slow or stop the disease in time to help him. Now he just hopes that there will be something to help his children. I wanted to tell him that I thought something would be available in time to make a significant difference in the course of his disease, but I couldn’t. With reasonable confidence, I did tell him that I thought we would have more treatment options for his children if they were to be diagnosed.

Here’s why I could look him in the eye and tell him that…

My dementia-related research publications are in the area of professional and family caregiver knowledge, education, and intervention. In sum, it’s psychosocial. When I talk about my own research, I’m not talking about drug trials, PET scans, and biomarkers. I’m not talking about genes or neurodegeneration.

However, this week I was in a world where neuroscience nuances were hot topics of conversation. I’ve been told I have a very distinct “concentration face,” and I’ve been told that face looks a bit angry—even though it isn’t intended to be. I have a feeling I was wearing my “concentration face” while trying to process this stuff.

It was good for me. I need to be up-to-date so I can convey scientific knowledge to individuals and families. I teach this stuff in my college courses. And it helps me to understand why people with Alzheimer’s think, feel, and behave in the way that they do. It also reminds me not to be complacent because I have a lot to learn. However, the biggest reason it’s good for me is because it makes me more optimistic.

At this point, research is at an exciting place, but it still moves slower than we all wish it did. What makes me optimistic is not just the research…it’s the researchers. I read a lot of research articles about Alzheimer’s…but seeing a group of researchers proudly present the state of their project to a crowd of fellow scientists, professors, practitioners, and press? It reminds me that this is about people.

It’s about people with dementia, of course. It’s about their families and care partners. Then we’ve got professionals, like individuals who work for the Alzheimer’s Association and work tirelessly for advocacy and fundraising. Others work in nursing homes or memory care communities and see individuals who struggle with Alzheimer’s on a daily basis. What I want all of you to know, despite what you might think about the level of funding of Alzheimer’s research compared to research for some other diseases, is that the researchers are in this, too.

I met researchers at the conference who work 80 hours a week. They sacrifice time with their families (maybe to a fault) and forego vacations. They are committed and passionate. Some of them actually have little direct contact with those with dementia. They spend their time in a lab, maybe doing statistics or looking at brain scans. You might think about their daily routine and think they are detached from the actual day-to-day life of those affected by Alzheimer’s. If you have Alzheimer’s, it’s true that they might never really know what you’re going through. Maybe they will never know the challenges of a family care partner. But I want you to know that they are in this as well. And they do care. It’s more than a job. It’s their purpose.

At the conference, there was an area in the lobby with a huge sign that said “Mix and Mingle.” If the thought of that sign makes you cringe because you’re slightly socially awkward, we might be kindred spirits. (When I was a kid, my parents told me not to talk to strangers. I still typically follow their advice.) I spent just a bit of time in the mingling area—much of it on my laptop feeling like a kid standing in the corner at a middle school dance. My thoughts alternated between “Somebody PLEASE talk to me,” and “I hope nobody tries to talk to me.”

But I did eavesdrop on mingling. I’m much better at observing and analyzing human interaction than participating in it. There were some conversations about when it was best to take an Uber versus a cab (quite useful for someone who lives in Cedar Falls, Iowa) and how the heat index was well over 100 degrees. This is also how I learned about the National Crime and Punishment Museum, which happened to be right down the street and was the best $21.95 I’ve spent in a while. However, much of the conversation I (over)heard was about…Alzheimer’s.

The researchers could have gone to sit at their hotel pools or see DC attractions during conference breaks, but they didn’t. They hung out and talked about…Alzheimer’s.

Sure, you can make some pretty negative accusations about huge money-hungry pharmaceutical companies. I am not naïve to how they drive research in the field. But this is about people. And this week I got to meet some pretty motivated, bright, and optimistic people. It’s those people that will eventually crack Alzheimer’s.

Earlier this summer I was talking to a women with whose husband had passed away from Alzheimer’s. When she asked if I was going on any trips this summer, I told her that I’d be attending this conference.

She said, “You tell those nerdy scientists that they don’t know everything about Alzheimer’s until they see their spouse waste away from it.”

She’s absolutely right. They don’t know everything about Alzheimer’s. They may not know what it’s like to have the disease or what it’s like to be a care partner. But that’s not going to stop them from working 80 hours a week to find effective treatments and an eventual cure.

4 thoughts on “Conferencing in Dementialand (or What You Learn by Observing Minglers)

  1. Have you ever given direct care to a Dementia patient for a few hours? Not just talking?

    Can you imagine a RN just going to school,seminars and talking to patients. Caring is how we learned the most.

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  2. What a pleasure to read your Blog Elaine, I hope you don’t mind if I copy some of it over on to our support site on FB. I too have great faith in the younger people coming through , they have the drive and the brains , just need the direction , the encouragement and the positive feedback. You carry a very bright torch , keep shining it. The roads are becoming better lit in dementia world !

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    1. Thanks for your support and positive attitude! I work with some fantastic college students who are majoring in Gerontology. I have high hopes for the future of this field. And you have permission to copy this link or any info. I only ask that you make sure you tell readers where it is from….not necessarily because I want the credit but because I want them to be aware there may be more information here that could be helpful to them on their journey.

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