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Tuesday, Mar 31, 2015

Diagnosis: Alzheimer's; now what?

Commonsense Caregiving


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It is frightening enough to have your doctor tell you that your dementia is most likely from Alzheimer's disease. What is even more devastating are the next words that may come out of his or her mouth, "Fill this prescription and I'll see you in six months."

Once the initial shock of being diagnosed with Alzheimer's begins to wane, you will wonder what kind of cataclysmic future lies ahead of you.

In all actuality, you were just given a diagnosis of having a terminal disease (there are no Alzheimer's survivors) and then sent on your way.

When this occurs, I would like to suggest that there is a better way to handle the after effects; it is called a "mentor program." This is where someone who has the disease themselves and is still in the earlier stages is there to help explain what to do next and that life is not over. Many patients can live a fairly normal life for many years with the help of these mentors and, of course, their loved ones as well.

A dear friend of mine told me that when he was initially diagnosed, it was indeed the end of the life he knew; however, it was also the beginning of a new and different one. He and many others living with this disease have proven to me that, after this dreaded diagnosis is made, it quickly becomes time to start concentrating on what they can still do and stop obsessing about what they cannot.

Sending a patient home in a frightened and confused state is cruel, to say the least. It exacerbates the symptoms and causes exactly what every doctor tells a dementia patient to avoid: anxiety and turmoil. Again, here is where counseling is of great value.

We shouldn't have to educate our doctors on how to care for patients in these circumstances, but unfortunately, we do. In a perfect world, I believe it would be mandatory for every doctor dealing with dementia patients to spend at least one hour during their career attending a dementia support group. Not to talk, but to listen! If they were surrounded by patients and caregivers, talking about what hardships they experience in their daily lives, these doctors would get an education that no money could buy.

I've said it a thousand times, "Support groups are where the true dementia experts will be found." They're the ones that are living it or have already experienced the journey first hand.

The first few weeks after this diagnosis is given are crucial. This is where we need to concentrate on directing them down the right path. Doctors themselves should have a printed list of all the local support groups and Alzheimer's organizations, ready to be distributed. By having the correct literature and contact numbers, these newly diagnosed patients would be helped immensely. It sounds like a simple plan, doesn't it?

I have compiled a list of local support groups and helplines to hand out to all of the medical offices in my area to be given, without fail, to all newly diagnosed dementia patients and their families.

This is so much better than sending them home completely blindsided.

Gary Joseph LeBlanc was the primary caregiver of his father for a decade after he was diagnosed with Alzheimer's disease. He can be reached at His newly released book, "Managing Alzheimer's and Dementia Behaviors," as well as "While I Still Can" and the expanded edition of "Staying Afloat in a Sea of Forgetfullness," can be found at www.commonsensecaregiving .com.

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