Apr 29, 2014

Deeply Forgetful and Deeply Forgotten

It seems that when Alzheimer's or a related dementia strikes we the care givers, and those living with the disease become invisible. Why isn't this the message?

Bob DeMarco
Alzheimer's Reading Room

There is no doubt that Alzheimer's disease is a sinister disease.

Deeply Forgetful and Deeply Forgotten | Alzheimer's Reading Room

Many of the leaders in the Alzheimer's community describe it as "horrible". Others say over and over it "robs you of your memory".

Harry John's the CEO of the Alzheimer's Association said, "Alzheimer's is a tragic epidemic that has no survivors. Not a single one."

Is it any surprise that the stigma attached to Alzheimer's is strong and thriving when our own thought leaders are delivering that message over and over?

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It seems that the most popular message is the message of hopelessness.

As a result, it comes as no surprise to me that many of the people I meet that have been touched by Alzheimer's or dementia are encompassed by a feeling of hopelessness.

I can tell you this. When I meet these people and I say,

"Alzheimer's patients are capable of more than you can imagine",

their faces light up.

They want to know what they can do. They are ready, they are willing, and they are able.

There are an estimated 44 million people in the world living with dementia. How many caregivers are there in the world? 120 million?

How is it that we are so invisible, and in most places in the world receiving so little help?

The predominant thought by our leaders is if they continue to tell everyone that will listen how "horrible" Alzheimer's is they will finally convince politician to do something, specifically to put more money into Alzheimer's research.

I have never believed that you convince someone by leading with a negative, and making a negative argument. Aristotle did not believe this either.

Is this message bringing results? How are they doing?

When Seth Rogen testified in Washington, how much time did he spend talking about the "plight" of the Alzheimer's caregiver?

It is my belief if the leaders spent more time explaining that "real" people live with Alzheimer's and dementia; and that, "real" living, breathing people are caring for them 24 hours, 7 days a week, they might receive a better reaction.

Let's make it real.

Those testifying might explain to those that are listening that they are going to either live with dementia soon, or someone they love is going to live with dementia soon.

Forget the big meaningless numbers that are not having the intended impact. No one is really listening to those numbers any more, anyway. They already know the numbers are huge.

Let's get personal.

New studies show that Alzheimer's is the third leading cause of death in the United States.

It seems to be a secret that persons living with Alzheimer's can live their life.

Persons living with Alzheimer's or a related dementia live for a long time. Around 7-8 years on average from the time of diagnosis.

Do you feel your situation is hopeless?

What would you say to someone that believes when Alzheimer's or dementia strikes

the Situation is Hopeless?

The public needs to know that sooner or later many, if not most, of them will be joining our club. The club of Alzheimer's caregivers.

Should they wait until Alzheimer's strikes to start complaining that there is little or no real help for Alzheimer's caregiver until you go broke (become poor) in the United States. This means Medicaid by the way.

Are you and your loved one with dementia living your life?

What message do you believe we should be delivering to the public?

Do our politicians and thought leaders really care about the

Deeply Forgetful?

Or, are they the Forgotten?

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Bob DeMarcois the Founder of the Alzheimer's Reading Room (ARR).

Article from Alzheimer's Reading Room