Saturday, February 12, 2011

Just Don't Let Anyone Know You're Here

A reflection of how society often does not welcome
people with Alzheimer's.
Photo by Jeff Norris
My family and I were very excited about a race we were planning in conjunction with a large annual community event. The plan was to have the race proceeds going to the Alzheimer’s Association. After the event there would be a tent reserved for people with dementia and their families and friends to all get together to socialize as well as participate in the larger community event that day. We would have items to sell which would raise additional funds for Alzheimer’s. This was shaping up to be a great community event where people with dementia would be recognized and integrated into the larger community. We had been planning this with the community event organizers for over four months.

Yesterday we were informed that while the event planners would still donate the proceeds from the race to the Alzheimer’s Association, they did not want to reserve tent space or tables, sell items, or have any signs mentioning Alzheimer’s at the event. The only time Alzheimer’s would be mentioned was on the event registration stating that proceeds would be donated to them. Their view is that Alzheimer’s is a depressing disease and the community event was supposed to be fun. They fear that recognizing Alzheimer's publicly would decrease attendance at the event because people do not want to be around people who have Alzheimer’s disease.

We politely declined to participate under these circumstances because the purpose was to raise awareness about the disease. The community event’s coordinators said at least we would still get money donated to the Alzheimer’s Association, and that was better than nothing. In our mind, that is not true. They were asking us to take money in exchange for hiding people with Alzheimer’s and dementia. They were saying people like my Mom are not welcome there, not part of our larger community.

Of course, I am upset by this turn of events. However, I am not surprised. This group is no different than the majority of the world. They fear a disease they do not understand and so inadvertently hurt and stigmatize people who are suffering.

My family and I will continue to raise awareness and work to end this stigma in any way we can. I try to remember the title of John Zeisel’s book about Alzheimer's care, called “I’m Still Here.” We want people with Alzheimer’s to know they are always still here, we will always see them. As Zeisel says, people living with Alzheimer's should not be hidden from society. 


Rev. Katie

P.S. Even if you know what event I am talking about, please respect my wishes and do not disclose what event this was. This is not a problem associated with one group, they are just an example of society as a whole. All people deserve to be treated with respect.


  1. This sort of thing makes me very angry. Yes, Alzheimer's disease is a 'depressing' thing (actually, I would have called it 'tragic', myself), but it's also a REALITY. We can't hide from it, and nor should it be hidden away. It's a horribly isolating illness already - sufferers and their families NEED the support of the community, not their cold shoulder.

    I'm so sorry for you and your Mom and all the people who would really have benefited from the ideas you had. The community event has lost out big time, in my opinion.

    (Lilac to Ventoux)

  2. I don't get that logic. Are they saying that, for example, cancer *isn't* a depressing disease or that the American Cancer Society doesn't go about fundraising the right way? Because the Relay For Life community events not only tend to be fun, they usually feature and even specially honor cancer patients and survivors.

  3. @Camilla,
    We do need the support of communities, so thank you for raising awareness through your ride and blog!

    I am not sure about the logic. A few years ago when I was volunteering with another community group, they talked about the idea of what advertisers call "sexy diseases." Apparently there are some diseases which are more popular in fundraising because they are not scary. I guess the emotional outbursts of diseases of the brain is considered scary and dangerous, while cancer, while sad and scary, does not portray the person with the disease as out of control and "crazy." That seems to be the logic, although I think classifying diseases as "sexy," meaning popular for fundraising, is inappropriate. It seems to be the fear of what happens to the mind that creates such stigma against dementia and other diseases of the brain. People no longer seem to be afraid or embarrassed to talk about cancer or heart disease, but they don't talk about dementia and mental illness hardly at all.