Nov 17, 2012

Dementia Friendly World - the Grassroots Movement

We are not dead, we are survivors, we will take care of ourselves, and we are ready to come out of the grass for all to see.

By Bob DeMarco
Alzheimer's Reading Room

Dementia Friendly World - the Grassroots Movement
I could have entitle this - Honey I Shrunk the Kids. Lets face it, we the Alzheimer's and dementia caregivers, and the deeply forgetful, have been almost invisible.

For years I have been saying, we are down here in the grass and not only can't most people see us, the people that know we are here, and should be looking for us, don't care.

A long time ago I wrote the first version of  Are Alzheimer's Caregivers the Forgotten? That article brought the longest, most heartfelt emails I have ever received.

When a caregivers finally understands that most caregivers are abandoned by family and friends this understanding brings with it a strong emotional release. Tears, then relief.

The realization that it's not just me leads to the understanding - I am not Alone.

How many of us have felt alone or abandoned? Most of us? Almost all of us?

This is about to change. And it will change in the way that I always expected. We will rise up out of the grass instead of waiting for someone to come and find us. The days of complaining about our own sorry fate are ending.

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The world is ready to change. This change is not being driven by the traditional powers that we begged to help us; instead it is being driven by people who care and understand our needs. A good example are Memory Cafes that are springing up all over the World.

In the U.S. these Memory Cafes are not being started or funded by the traditional power structure that asks for and holds the donations. They are being started by the little people, the grass people. And, they are being started with little, and most often, zero funding.

This is happening with little or no help from big organizations. Instead this grassroots effort is being facilitated by people that are sick and tired of waiting for someone else to do it.

There are a series of grassroots movements starting in the World as I write this. Grassroots movements are often started by people that just can't take it anymore.

Grassroots movements are not driven by traditional power structures. In fact, they start because the people in traditional power structures, and with the means to do something, fail to do so.

Grassroots movements start, well, down, in the grass. They start with a few people, then with a growing number of local volunteers, and then finally with the support of the local community.

Eventually if worthy, and if needed, grassroots movement spread like a wild fire.
The movement spreads locally, then nationally, and sometimes Internationally.

Grassroots movements start when people become so very frustrated they can't take it anymore. They get tired of waiting for traditional organizations to come and save them. They stop asking, stop complaining, and stop wondering why the people with the money and power don't do something.

The grass people finally realize its up to Me, and its up to Us.

We have to start taking care of Ourselves, because if we don't, no one will.

Right now Memory Cafe's are starting up all over the world. In the UK the Dementia Friends program is starting. And in places where people really care, Dementia Friendly cities and towns are being born.

There Ain't No Stopping us Now.

Some of you are wondering, why I am so confident? Why are my beliefs so strong?

My beliefs are stemming from my belief in people. But not only that.

I noticed a trend here on the Alzheimer's Reading Room in the last few months. The number of readers started to grow fast from outside the United States. For years the numbers were always the same. About 78 percent readers in the U.S, 22 percent from the rest of the world.

Now all of a sudden 37 percent of the readers are from outside the U.S.

At first, I really couldn't figure out what was going on. We don't advertise, we don't market the site. You have to find us via word of mouth, a search engine, or social media. You have to find us.

I was perplexed at first by the growing number of readers from Ireland. Only a small number of readers, but disproportional for a country of that size. The population of the State of Florida, where I live, is almost five times the size of Ireland.

Why are readers coming from Ireland?

Because in Ireland they have already realized that dementia is more than a medical condition or problem, it is a problem that is so big it effects the entire Society. They understand that in order to deal with the problem the whole of society must be involved.

So the society of Ireland as they focus on the problem start to look for information on Alzheimer's and dementia. It seems some of them are coming here.

The UK is clearly the world leader in understanding that dementia is a whole society problem.

Through the leadership of UK Prime Minister David Cameron,the Alzheimer's Society has been funded and charged with the Mission of educating and training one million Dementia Friends.

Many of these Dementia Friends will be the wonderful people. Like the wonderful dementia friends that adopted Dotty - see Dotty Had Dementia Friends, and They Are Wonderful People.

We didn't even have to ask those people, they came to us of their own free will.

Before long, the world will come to the understanding that many of the people living with dementia are quite wonderful themselves. Instead of hiding and abandoning us, they will learn that a smile received from a person living with dementia can be wonderfully fulfilling. Make your heart glow.

Back in late 2008, I came out of the grass. Because I was encouraged to do so, I started writing seriously on the Alzheimer's Reading Room. And then, the grass people came.

I understand as well as anyone on this planet how the grass people think and feel. I have heard from and listened to them right here. After all, I am a person of the grass myself. So I understand.

I can't tell you how excited I am right now. I knew we would do it, and now we are going to do it.

It will be quite amazing and wonderful.

There are millions of wonderful people in the world. And, as they finally understand how caring and compassionate that we the grass people are, not only will they want to be around us -

They will want to hold our hands.

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Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room