Last week, I joined the Alzheimer’s Speaks Talk Radio for their show on Alzheimer Syndrome. Dr. Cameron Camp, the Director of Research for the Center for Applied Research in Dementia was joining to share his ideas on Alzheimer Syndrome and how it affects the culture of care.

When I came across the Alzheimer’s Speaks Blog post about their radio show with Dr. Camp on this very topic, I was excited to join in and hear more about it. I was hoping that he had further information on these barriers, doors, and stigma and a (good) explanation for why they would now want to change the name of Alzheimer’s.

This radio show was focused around the ideas presented in the Center for Applied Research in Dementia’s YouTube video on Alzheimer Syndrome. Please check out my post on Alzheimer Syndrome – Part 1 for my review of the video.

The Alzheimer’s Speaks radio show is hosted by Lori La Bey, Cameron Camp and Harry Urban were her guests during the show.

Lori started off talking about how Dementia Friends in 17 countries now. Yea! I liked how she spelled out websites and “aphasia”, talked about other dementias (FTD, DLB). She also talked about how a group will be at the Minnesota State Fair, doing cognitive screenings, like they did last year. This is an interesting idea to me. I think health screening is a great thing; it’s a great way to reach people who may otherwise not get screened for health issues. However, I wonder how they inform people of their results. Do they tell them right there that they should see a doctor for further evaluation? That seems like a weird environment to be giving news that someone may have dementia. I hope they send the results in the mail later.

Then, Lori introduced Cameron Camp, PhD from the Center for Applied Research in Dementia. Cameron read script for the YouTube video. This time, hearing the words without watching the video, it hit me that he was trying to say how people with Alzheimer’s Disease should get similar disabilities/accommodations as those with Down Syndrome, for example, coverage under the Americans with Disability Act. Cameron talked more about the Act and how it seems no one had considered using it before, but the people with the Americans with Disabilities Act said that people with a disease are included under the Act. He then talked about Dementia Friendly Communities and how they build these cognitive ramps for people with dementia (akin to wheelchair ramps for people with mobility problems). He said that the video is designed to push those ideas forward.

Hmm, as you can read in Part 1’s review on the YouTube video, I don’t think he got that message across very clearly. I understood the video to be about changing the name of Alzheimer’s Disease in order to achieve these ideas. I also showed the video to a few close friends who got similar impressions that the name change was a major part of the video. While this radio show was helpful in clarifying that the focus of the video is on the ideas, not the name, it still isn’t clear if they are wanting to change the name or if they were just using it as an example for how to change our way of thinking.

If dementia is already covered under the Act, I wonder why, then, change the name? And if only diseases are covered under the Act, would this exclude the other dementias that are not diseases? When i did a quick search on the Act’s website, I found there had been people with dementia who invoked the American’s with Disabilities Act. From one of the ADA’s settlements by the Department of Justice:

A senior citizen with mild dementia alleged that a senior center in Maryland refused to allow her to participate in exercise classes even though her personal attendant was available to participate with her. The state commission overseeing the senior center acknowledged its error, delivered a letter of apology to the complainant, reprimanded the employee who failed to follow established procedures, and provided the employee with more training on accommodating persons with disabilities.

Lori talked about how a lot of communities and businesses are getting on board with being dementia-friendly in the US. She participated in the Watertown, WI group (you can read my post on Watertown here). She said that inclusion versus exclusion is a huge piece of the pie.

Harry Urban (who has Alzheimer’s Disease and is a regular guest on Alzheimer’s Speaks radio) called in. Harry said that he understood the video as advocating for quality of life (QOL), a lot of money is spent on research, but more needs to be done for people with dementia. He wasn’t sure how he feels about being thought of as handicapped, but supports focus on QOL.

All agree QOL is the central issue and Lori and Harry gave the opinion that if this video helps the cause and can lead to a better QOL, then maybe it is a good way to do that. I agree with the fact that QOL is a central issue when working with dementia – also for the care partner. However, I don’t agree that we should just go with an idea because it could help a cause. To me, that seems like going with the flow and hoping it turns out in our favor, rather than making an actual strategy with goals.

Cameron talked about the normalization of dementia in society. You can read more about this in my post on How Communities Can Help People with Dementia.

Lori encourages everybody to watch this video – and to think about how do you perceive things, how do you react to things, what’s your goal, what can you do to do things differently? She thinks it will have a big impact on people. Cameron talked about how at airports, you will see posters of celebrities with someone with a developmental disability, but we don’t see any of that with dementia. Where’s that? Where are the public service announcements about “I’m a person with dementia, I can still…”? This was an interesting idea to me. On the one hand, it could help to raise awareness and in normalizing dementia. On the other hand, it somewhat exploits people with dementia for marketing purposes. A campaign like this would need to be done carefully and with the close involvement of people with dementia.

Harry talked about how everybody has their own idea of what dementia friendly is. He gave the example of a golf course – are golf courses dementia friendly, could a person navigate around without becoming lost? There are so many little things that could be dementia-friendlier that we don’t think about. He said that maybe the viewpoint of being handicapped is the way to go. I hadn’t thought about golf courses  before, and it was great that Harry brought this up. It’s quite true that there are many things that could be dementia-friendlier. Thanks, Harry!

The speakers stressed the importance of including the opinions of the people who have dementia when making things dementia-friendly, when considering their needs and wants. One of our goals should be to remove people’s fear and get back to the core of relationships. I completely agree.

Lori then asked Cameron about the response to the video from others. He said that the majority are positive, and Dr. Camp said that some people say,

Well, of course Alzheimer’s Disease is a disease. (laugh) I think they’re missing the point of the video. It’s about changing the way that we think about thinking along different lines. Some people say (laugh), of course disease is covered in the Americans With Disabilities Act. Reality is that we aren’t seeing those dots connected in term of people with dementia and how they might be covered on this. There are a few negative comments, but I don’t know if they’re looking at the true purpose of the video.

I guess I am one of those negative commenters. I don’t think he made this point very well in the video. I think it’s misleading that he would suggest calling it by a different name… especially when one of his points is that disease is covered under the Americans with Disabilities Act, why not focus on that instead of focusing on the name? Coming from a director of research, respected in his field, it gives the implication that he has done research on this and is suggesting a name change to accomplish these larger goals. That is the impression I got. Yes, he also says to change the mindset, but I feel the name changing is distracting, as it was to the people who are not dementia experts who I also showed the video to. Obviously, if I felt strong enough to do 2 blog posts on this 😉 Perhaps, instead of laughing under his breath and passing us negative commenters off as not getting the point, he could consider that he is not making his point very clearly in the video, or that other information in the video is confusing his message. We are all on the same side and, it seems, moving towards the same goals, so it’s much better if we can learn from each other along the way.

Lori wanted to discuss the negative comments regarding the video and talking of changing the name… she can see why Alzheimer’s is the key word, the majority of society thinks of dementia and Alzheimer’s as the same, and she is glad that people are using dementia more and more frequently instead of just Alzheimer’s. Harry said how in the area where he lives, they are trying to do away with the word dementia, because they say it is demeaning to people with dementia. He doesn’t know for sure what he thinks about this. I wonder what they are suggesting to call it?

Lori asked Cameron if he has learned anything new since the release of the video about people’s perceptions and opinions of dementia. He said he learned that there is some crossover between medications in dementia and Down Syndrome, that sometimes people can have thin skins when their presumptions are challenged. He said how the focus of his work is motivating people to do new things and to think differently (yet he passes off opposers as not getting the message, rather than considering what they are communicating to him). And then he talked about the different countries and cities he will be visiting to give talks and workshops at in the coming months.

Harry said care partners are guilty of handicapping us… they do too much for us because they don’t like to see us struggle. This causes us to lose a lot of our skills and rely on them (concepts known as learned dependency or learned helplessness). It’s interesting that he chose the verb handicapping as the frustrating thing. He talked about how people with dementia can still do things, not to give up, to keep trying, maybe you will be able to do it another day if not today.

I would like to think Dr. Camp is meaning that we should think of Alzheimer’s more as a syndrome (or disability) than as a disease, but I don’t think that we should necessarily think of dementia as a handicap. Like a handicap, sure, but not as a handicap… I think it is misleading. Dementia (most types) is progressive and requires a different set of skills, has a different set of needs, and is unique when compared to other handicaps, such as low vision, missing a limb, or deaf. I agree wholeheartedly that we could think of dementia like a handicap in that we, as a society, adjust the environment and our perceptions to include them in society. But, part of that would include the progressive nature of most dementia, and I worry that categorizing it as a handicap would diminish that aspect, or like it could get lost in the details. Would equating dementia with handicap achieve the larger goal of societal acceptance and accommodating environments? I think that we could achieve the goals under the dementia-friendly umbrella better if we educated people and communities about dementia – not equating it to a handicap, but really telling them what dementia is and the support that someone with dementia could use. Dementia really is a unique syndrome and I think that we would do better to highlight that, rather than try to group it with other disabilities.

Plus, I never heard any good reason why it should be called Alzheimer Syndrome instead of Alzheimer’s Disease, or any reason at all, really. And, as you read in Part 1’s post on this topic, different medical terms describe different processes in the body, so to change a name requires facts to support the change. And it’s still unclear to me whether or not Cameron Camp is suggesting a name change or just a change in perception (and the changed name was a way to highlight that).

While it was good to tune in to the radio show for a bit more clarity on the YouTube video, it didn’t really answer all my questions. I was happy to hear that the focus of the video was on changing how we, as a society, view dementias and that the focus is on Quality of Life and including people with dementia, especially in the decision-making process. Yet, I still am not sure why the video compares Alzheimer’s to Down Syndrome, or suggests the name change at all. I think the video could be much clearer and to the point than it is now.

Lori suggested to contact Cameron Camp with our opinions or post your view on the Alzheimer’s Speaks blog. I think I may email Dr. Camp on the impression I got from the video and how he is presenting this shift in perceptions of dementia. Have you seen the video? What do you think of the video or this movement? I would love to hear your opinions in the comments below!

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