Saturday, March 1, 2014

The delivery of the Dx needs to change

When I wrote my book, "While I Still Can..." the very first chapter is called "Seventeen minutes".

That is the time it took to sign me in, get to see the Neurologists and get my diagnosis of Early On-Set Alzheimer's Disease.

There was no "You have dementia, probably of the Alzheimer type". Matter of fact I never even heard this term till about two years ago.

Back then no one was saying "Dementia, probably of the Alzheimer type" but now everyone is.

It's like they got re-diagnosed or something. The truth is and what you as a caregiver will deal with makes no difference if it's EOAD, Alzheimer's, Vascular, or any of the other types of dementia.

We all suffer from some sort of brain disease. And when you are diagnosed they add that little saying now, "probably of the Alzheimer type" for one reason and one reason only.

They don't know. And that's fine. But why not say this:

"My name is Dr. Jones. After all the tests we have done, and I have seen the results, we have reason to believe that Mr Phelps has dementia.

We are not sure of what type, because there are so many types and right now, we just don't know. But he does have and shows signs of dementia, that is the only thing that matters.

We will begin treatment right away that will include the latest medications that may lesson the symptoms. We cannot give him anything to slow the progression as of right now there is no medication to do that.

This is a terminal disease to which there is not cure. It is a disease of the brain, the most complex organ in the body and we know little about it right now.

We are making progress, but for now as I said we will put Mr Phelps on a regiment of medications to help with the symptoms. We will also be prescribing some medication to him for anxiety, stress, and nerves.

And you, Mrs Phelps should also think about allowing us to give you something to help you with what you too are going through and what is to come.

My office will provide you with a list of phone numbers to call. The most important right now is the Alzheimer's Association. They will have a representative assigned to Mr Phelps and will answer any and all questions you have.

I am sorry. We will be here with you. And I will do everything I can to make this journey for you both as humane as I possibly can. Any new medications that come out, we will talk to you about.

Again, I am sorry."

This is how your first initial visit should go when learning you have dementia. Most cases it doesn't. Most cases it isn't even close. That is what we need to change.

My very first introduction to this disease we were told nothing, not where to go for answers, not who to contact, not what is coming next. This needs to change.