The Fear, Stigma and Shame of Alzheimer's Disease

 It doesn’t take a rocket scientist to answer why to the question posed by Angil Tarach-Ritchey in her commentary on her Alzheimer’s Reading Room commentary The Fear, Stigma and Shame of Alzheimer's Disease. Click on the title or on Archive to read it.

Angil, operating a business known as Visiting Angels, offered free memory screening on November 16th which was National Memory Screening Day  as set  by the Alzheimer's Foundation of America. No one came to the party. She checked other agencies offering the same service, a simple memory screening test, the might be suggestive of developing Alzheimer’s Disease (AD). No one came to any of them. Why? She asked.

So why on earth would one want a screen?

If you don’t have it, don’t want to have it, don’t know you have it, why on God’s green earth would you want to upset that apple cart and find out.

The stigma of AD is overwhelming. The fact of AD is sufficiently overpowering in the absolute change wrought over your life and that of your loved ones. It ain’t no fun once you have to deal with it. It is a deal breaker that covers the rest of your life.

The limitations it produces are massive. They are functional limitations, life style limitations and that but starts the list. These are the limitations enforced from within when you have the disease and must cope with it.

The limitations enforced by society are even greater.  Job security floats out the window, economic stability is already out the door. This just starts another long list. That list is finished by the benign isolation that sets in hurrying the afflicted along the path of decline.

Benign neglect results from many factors which starts yet another list. This list is topped by abandonment by friends and family. They don’t mean to but not knowing how to handle it put handling it off to another day that never quite comes.

A second isolating factor is the system of support as it now is. If you are still functional, there is little out there for you unless produced by a caretaker with the time and the resource to provide it. Lacking that you stay at home alone isolated, dejected and depressed by it all!

Stopping the list there, in no way exhausting it, the person afflicted with AD still able to  function has little to no help but to get away from the knowledge of what in fact is coming down. That leads to an attitude of “let’s get on with it, and get it over; this is no way to live.”

So who wants to know vacation is over early this year and you are enrolled in hell for the next school term?

So much effort is spent on organizing and raising the money to find the cure. Is this good, bad, I do not choose judge. I do however suggest if half the effort were directed to helping folks cope with AD before they are fodder for the Warehouse (aka) Nursing Home we might get a better response to memory screening.

If AD did not present itself in our culture as something to be shunned, as stigma, by the sense that life is over because of it, one might be more willing to deal with AD as a possibility in life.

The functional state can be prolonged if given appropriate response and appropriate support. I but reiterate something I and many have said too often so will not know. So much in terms of active support to enhance one’s quality of life and clarity of cognition can be provided that is not now provided.

The support structure is overburdened by care required by later stages and by effort to find the cure. It is not making the time, expending the resources or exercising its ability to address the special needs for maintaining functionality in the Early Stages of AD as much as it might.

We are making a massive health and cultural mistake in letting this need slip by our attention and activity span. If addressed it will make Early Stage Early Diagnosis and Memory Screening attractive. It will do so in recognizing the need of and the means to treat AD at the earliest possible time.

This accomplishes two goals if not an entirely new list of goals. Early detection affords the likelihood of doing something to stem the rush into the warehousing stage of AD and thereby save the community and individual cost of it. It will also increase quality of life and ease the burden of AD for the one with it and the ones around it.

As it is now, hell, who wants to know!