Seth Rogen delivered awesome testimony this week at a Senate hearing on Capitol Hill regarding Alzheimer’s and the shameful lack of awareness and funding directed toward this disease. Here are a few quick facts to start off:
- Alzheimer’s is the 6th leading cause of death in the US
- 1 in 3 seniors dies with Alzheimer’s or dementia
- Over 5 million Americans have Alzheimer’s
- Alzheimer’s cost the US $203 billion in 2013, and is expected to increase to $1.2 trillion by 2050
Rogen’s point was ironically apropos considering only six senators appeared to hear his testimony, and four left halfway through. This lack of concern may have been to Rogen’s (and the Alzheimer’s community’s) advantage, however, considering his outraged tweets have probably done more to draw attention to the cause than his hilarious (yet in many ways heartfelt) testimony could have done on it’s own.
Not sure why only two senators were at the hearing. Very symbolic of how the Government views Alzheimer’s. Seems to be a low priority.
— Seth Rogen (@Sethrogen) February 26, 2014
All those empty seats are senators who are not prioritizing Alzheimer’s. Unless more noise is made, it won’t change. pic.twitter.com/xDW6tlMHmH
— Seth Rogen (@Sethrogen) February 26, 2014
I was really touched by his testimony because I had almost the exact same experience the first time I met my husband’s family. My husband’s dad is a brilliant man (phD brilliant), and I loved him instantly–he was funny, kind, thoughtful, and a great storyteller; but I could tell something was a little off. He was only 55, but it had become apparent to his family around that time that he was struggling with some memory loss. As time passed it was determined that what he was dealing with was decidedly indeterminable. Often the label “Alzheimer’s” is used to describe dementia or other neurological disorders, but they aren’t the same. Different diagnoses were given from various forms of dementia to early-onset Alzheimer’s, but there was no way to know for sure. What was certain was that his life and the lives of those closest to him have been changed in ways that I would have never expected. If you’ve seen The Notebook, it’s not like that.
Dementia, Alzheimer’s and similar neurological disorders go way beyond simple forgetfulness. Even in the early stages, sufferers will most likely deal with severe memory loss, impaired intellectual functioning, as well as an inability to perform complex or simple tasks. They alter personality, behavior, and can lead to impulsiveness, poor judgment, and constant confusion. They effect confidence and the ability to form and maintain relationships. Sufferers will likely feel a certain degree of shame and embarrassment at their inability to do everyday things, as they may be fully aware of their new limitations. When people develop Alzheimer’s or dementia at a young age, plans, hopes, and dreams are shattered, right at the time when most have entered a stage of new-found freedom from kids, work, and other responsibilities. Families are devastated as they helplessly watch their loved ones deteriorate and become someone completely different than the person they always knew. Caring for a person with Alzheimer’s or dementia is a heavy burden that requires constant supervision and patience. They are forced to make difficult decisions about how to best care for (and afford care for) that person–whether at home, by hiring in-home help, or to relocate them to a care-center–and will inevitably feel guilt if they are unable to manage caring for them on their own. In the advanced stages, sufferers may completely lose the ability to take care of themselves, whether it’s showering, dressing, or even going to the bathroom alone. And there’s always the constant fear of what the future will bring; how fast will the disease progress and how severe will it get?
There’s no cure for Alzheimer’s or dementia, and while there are medications and experimental treatments, there is no definitive way to slow their progression. According to the Alzheimer’s Association, “Alzheimer’s is one of the most critically unaddressed public health issues in America;” dementia gets even less attention. There needs to be a greater push and more vocal advocacy for finding a cure for Alzheimer’s and dementia. There also needs to be a wide-spread movement that advocates for Alzheimer’s and dementia sufferers and their families, as well as normalizes and eliminates the stigma relating to the symptoms associated with these diseases –look at how our society now views and fights against breast cancer thanks to the Susan G. Komen foundation. I also want to give a shout-out to my little brother who is currently doing Alzheimer’s research for a major University–so proud of him! I’m hoping you’ll be interested enough to learn more.
Dating Dementia: An awesomely funny and touching blog relating to Alzheimer’s and dementia issues for sufferers and their families