More Alzheimer’s Activists, More Challenges?

Alissa Sauer
By Alissa SauerJune 29, 2015

As Alzheimer’s disease and dementia reach epidemic proportions, more people living with the disease are using their personal experiences to call for increased funding and support.

Their passionate cries are crucial to raising awareness and funds, but the disease itself brings unique challenges. Learn more about these courageous Alzheimer’s activists and how the disease can be come a hindrance to advocacy.

More Alzheimer’s Activists Are Speaking on Their Own Behalf

According to the latest statistics from the Alzheimer’s Association, nearly 44 million people worldwide have Alzheimer’s or a related dementia, and 5.3 million of those people are Americans. It is projected that as many as 16 million Americans will have the disease by 2050 unless a cure is found.

As the disease progresses and trends toward epidemic proportions, more people are calling on the government for increased Alzheimer’s research funding. Some of the more influential voices reaching the ears of potential powerful investors are from people who are actually living with the disease.

Those living with the disease are able to passionately petition for government support in search of a cure or more advanced treatment options. They can also speak of the devastation of the disease from personal experiences. One such activist, Alexander “Sandy” Halperin, former dentist and now Alzheimer’s advocate said,

“For those of us living with dementia, the harsh reality is that this insidious disease has declared war on our minds.”

Their speeches convey a much needed sense of urgency surrounding the search for a cure, partly because a cure could help them and even save their lives.

In addition to the urgency they bring to advocacy, raising Alzheimer’s awareness and petitioning for research funds can help people with dementia by giving them purpose and a cause. They are living, breathing evidence that fights the stigma that often comes with an Alzheimer’s diagnosis.

Advocate and author Thomas DeBaggio said this of his dementia diagnosis: “So that started a new purpose for me in life. And I believe it’s what kept me as lucid as I am.”

Alzheimer’s Brings Unique Challenges to Advocacy

There is no doubt the strong voices of people living with dementia are critical in the search for a cure.

However, the very nature of the disease brings challenges to those in the public eye. As dementia progresses it can bring cognitive and memory lapses that can skew judgment. It can be difficult to write and read speeches. On top of all of the changes brought by the disease, people with dementia often endure stereotyping and condescension, even from other advocates.

Myriam Marquez is an Alzheimer’s advocate as well as a former public defender diagnosed with Alzheimer’s. She says, “Because of my children, I’ve been motivated to do everything I can to find a cure. So I put myself way out there. Sometimes I feel like I’m screaming that we have to find a cure for Alzheimer’s. And I’m a Buddhist, and I’m not really a screamer.”

The unique challenges brought to advocacy by people living with Alzheimer’s is highlighted in the story of advocate Michael Ellenbogen.

Since being diagnosed with early onset Alzheimer’s, he is passionate in calling for an aggressive fight against the disease. In a recent speech to the national Advisory Council on Alzheimer’s Research, Care and Services he mentioned the Columbine massacre and asked the Council if it would require a mass shooting, like Columbine, committed by someone with dementia to draw national attention to the disease. The remarks caused him to be banned from the Department of Health and Human Services, calling Ellenbogen a security threat.

In response, Ellenbogen said:

“I have tunnel vision. And I struggle. I might have once had the sense to figure these things out, and I can’t do that anymore. And you would think people would see that and cut me a break. I mean, it’s so hard for me to even do what I’m doing here.”

As the disease progresses many advocates feel ignored at a time when they need to be heard. Their voices need to be raised and other advocates and investors need to be listening to their pleas for funding, research and support. What do you think of people with Alzheimer’s advocating for themselves? Share your thoughts with us in the comments below.

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Alissa Sauer

Alissa Sauer

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