The Plain Truth About "Ending Alzheimer's"

28 Comments

The other day I turned my profile picture on Facebook to be purple. That is all that happened. I still have dementia.

I must have done something wrong, because from what I understand this simple act helps to end Alzheimer’s. It's what I have heard frequently. "Turn your profile picture purple to end Alzheimer’s."

Here's the deal: it won't.

Maybe it takes a day or two to end Alzheimer’s. Maybe, just maybe, it is going to take a bit longer.

I suppose people do this for some sort of solidarity. I get that, sort of.

Turn your profile picture purple. Wear a purple shirt. Walk a mile or two to end Alzheimer’s. Donate money to these organizations so they can end this horrible disease.

See what happens when you participate in these “movements.” Nothing will happen, that’s what. If I seem a bit cynical, let me explain what exactly goes through my mind when I see things like turning your profile picture purple.

  1. What?
  2. Waste of time.
  3. False hope.
  4. Why?

Here are my explanations for each thought:

  1. What? What in the world would changing a profile picture do to end Alzheimer’s? In my mind it is a cop out. It is a feel-good kind of thing, but nothing more.
  2. Waste of time. This one is pretty self-explanatory.
  3. False Hope. Doing these things may seem helpful, but it produces false hope for patients like me and their families.
  4. Why? Why would someone do this? I have absolutely no idea.

Here is a challenge for you. Google the color purple and what it is used to symbolize. You will find hundreds of causes and diseases that use the color purple to promote awareness, everything from breastfeeding and homelessness to migraines and suicide prevention.

What I really want is for people to understand what I go through as a patient. I don’t need them to wear a particular color to represent their disdain for this disease.

I really think you have to be a patient or a caregiver to understand how meaningless these actions are. I have family members, close friends, and members on Memory People who change their profile picture to purple. To me, they are saying in their own way, “we are trying to show support.” And that is fine. Just know that no color is going to change anything.

Pink has been the color for breast cancer awareness for decades. Pink didn't do anything, rather the amount of money spent on research and trials did, and most of that comes from taxpayers and government funding. Sadly, these things are lacking in the dementia field.

But there is something you can do that will mean more to a patient or a caregiver than all the purple shirts or purple pictures on Facebook combined.

Sit with a patient. Just sit with them. If they are in a facility, take time out of your busy life to visit them, even if it's only for 30 minutes or so. Most times you don't even need to say much. Just listen and agree with them.

Call or visit a caregiver. Ask them what you can do to make their life easier. Offer to run some errands, help them with their housework, take them out for a cup of coffee or just sit and listen to what their day, week, and month has been like.

There is something more powerful than all these catch phrases and marketing ploys put together and that is listening. Just be there and listen.

I have said for years that the only thing that will change how we deal with dementia is money, not donations.

Our government needs to recognize this disease for the epidemic it is and will become. It is going to take trillions of dollars, money that no donations will even come close to, to produce some sort of drug that just makes our lives as patients more tolerable.

If you give to an organization, God bless you. However, a portion of your donation is being used for payroll, and that is simply a fact.

Until we unite as a country and demand our government to take this disease seriously and spend serious money on trials and research, there will be no significant change.

How do I know this? In the last six years I have monitored this and studied how far we have come in the way of research and drugs for dementia.

We are not one bit closer now to finding a cure than they were twenty years ago. There are merely more people being diagnosed because there are finally more people talking about this disease.

It is still like in the 60s and 70s when you didn't dare mention the "C" word. Things are better, but only because the next generation of patients is finally coming out and talking about this disease.

If you ask any honest neurologist, they will tell you that Alzheimer’s is an unknown disease. Meaning, people know some things about the disease, but medicine just isn't there yet.

Getting "there" could still be decades away yet. If a cure was found today, it would be ten years or more before it filtered down to patients like me, and the cost will be astronomical. I hate being a downer, but if anyone thinks dawning a purple shirt or changing a profile picture will do anything, well, we have a long way to go.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

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28 Comments

JessieB, I feel the same way about a lot of the "runs" and events put on to cure this, that, and the other thing. Last weekend there was a run at the local park that included a bouncy castle for the kids, a barbecue and a compliment of fire, ambulance and police services in support. The newspaper reported on what a successful fundraiser it was but I wonder at the cost of all the frills and who was paying the salaries of all those emergency services. On the other hand, sometimes you do need to spend money in order to make money, just look at all the charity lotteries as an example.
When I make a donation to a reputable charity I will take the time to request where exactly I want my dollars to be used, ie research, community programs, etc.
I understand where Rick is coming from with what he wrote. There's an Alz run coming up soon. It will raise some money, which I'm sure is good. I don't know enough to know what this money goes for. Maybe some of it will go to research on the thoughts of inflammation & infection and amyloid plaques. That is hopeful. Maybe some will go for personal services. I really should look to see where the money goes.

The thing that did bother me about the runs is that we have people running up and down the block here all the time. They run past my mother without even a smile or a nod. If these are going to be the same people who are running for Alz, it seems a bit hypocritical. Why run for someone that you can't even slow down and say hi to?

I mentioned this on FB and was immediately attacked as being negative. Maybe so. But maybe it is because I am the only person in this world of 7 billion people who takes any time to talk to my mother. I understand what Rick is talking about. As someone in the trenches, I see the runs as social events for the runners. However, if the raise money for anything useful, the runs are good. I do wish we could get a better breakdown of what these funds are used for -- and not just generalities.
My mother has Alzheimer's. The last 10 years of both our lives have been devastating in a way I can't even express. An outsider will never understand. Your article was excellent. I couldn't agree more! Excellent points. I would love it of someone offered to help ir listen tobme. It would make all the difference in the world. Even my own sister doesn't see the value if visiting our mother in the nursing home, so I pay a nursing student to be there with her a few times a week. That company, in addition to my visits and my husband's visits, is invaluable! A real life line. But why should I have to do that when in addition to me my mother has another daughter and NINE siblings?! Wake up, world!!