I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Friday, June 5, 2009
Report on Panel before Nat. Alz.Org and AoA Conference in Washington DC
My wife Diane and I, on June 3, 2009, participated in a panel to address the specific needs of Early Stage AD in Washington D.C., at a conference conducted by the Alzheimer’s Association and the Federal Administration on Aging (AoA).
The panel consisted of three AD Afflicted persons and their Caregivers. The three with AD were members of the National Alzheimer’s Association Advisory Board. They were Susan Pointer, Monroe LA, and her daughter; Karen Zimmerman, Fairfax County VA, and her husband; and Diane and me, Minneapolis, MN.
It was an honor to be able to personally present our views and opinions of the special needs of those of us in Early Stage AD and our caregivers. It was also a wonderful opportunity to say directly that which too often is filtered through the views of third parties reporting what they believe we need.
The panel was moderated by a wonderful person, Lisa Gwyther, who is the Director of Research at Duke Bryant Alzheimer’s Research Center, Durham, N.C. There were around 100 attendees were from all over the U.S., National Alzheimer’s Association as well as local chapters and representatives of AoA. The folks involved have been charged with investigating the special needs of those affected by Early Stage AD. As such it was just a fantastic opportunity to be heard.
We urged many programs some of which were:
The significant need of education for the following:
To overcome the stereotype of any person with AD being one who is unable to take care of her/him self and is evidently confused and demented. The public needs to know Early Stage Normal is looking and acting like everyone else. It is being functional and able to take care of ones self, productive, needing yet to be part of the main stream.
Early Onset Alzheimer’s Disease (EOAD) needs more attention than it gets. The public needs to know it is different than the ordinary concept of it is an old person’s disease. It can and does strike young people, forty, fifty, and sixty, in their prime. It removes the person from the work force and leaves families adrift. It is a calamity that needs special attention because of its tragic personal and community impact.
If persons in Early Stage AD (ESAD) and Early Onset AD (EOAD) get the kind of help that is needed they have a far better chance of prolonging their time in Early Stage. This makes a distinct contribution to their quality of life and that of their families and loved ones. It makes the same contribution to the community in saving the cost of care required by the later stages of this dread disease.
AD in its Early Stage is not as some commercials portray. (Aricept’s commercial were cited as an example). Commercials often show a person with AD in need of medication is already significantly confused and limited. Medication is needed to prolong Early Stage while those of us in it are functional and not as depicted in this and other commercials. The commercials like this feed the stereotype of people with the disease as baffled and incapacitated.
This led into a discussion of the value of the 10 Warning Signs supporting the proposition of Early Detection Matters and the Principles for a Dignified Diagnosis both of which have been recently adopted and promulgated by the National Alzheimer’s Association.
Early Diagnosis is of benefit to both the patient, their loved ones and the community at large. It gets help sooner and secures a better quality of life longer for those affected. It also saves on Cost of Care in the long run.
A Dignified Diagnosis respects the dignity of the person afflicted with AD. It also circumvents the other stereotype that is often the special province of the Health Care Community which can be reluctant to hang the stigma of a diagnosis on a person because of what that person faces in society with the diagnosis. In these cases more often than not treatment is not provided when it can do the most good. It comes when a person is evidently afflicted often in the mid or late stages when little more than keeping the patient comfortable, distracted and subdued can be provided.
Five critical needs by people affected by Early Stage Alzheimer’s Disease were presented:
First Stop Programs: A Place where patients just diagnosed can come and learn how they and their families can deal with AD from those of us with it.
Support Groups: A Place where Early Stagers agree to attend with regularity and be open to the public designed for Early Stage offering support, camaraderie, and encouragement.
Creative Programs: For persons in Early Stage structured so that they are social, creative and intellectually stimulating such as to capture a person still functional and in need of more than the distraction afforded by most day care programs.
Volunteer Coordination: A central source to find volunteer opportunities for Early Stage AD where they can be directed to do volunteer work in the range of their respective ability.
Structured Wage Earning Workgroups: Sheltered Workshops for Early Onset AD’s to provide both work and wage when they have lost their jobs, their dignity and still need gainful employment.
There is a growing body of evidence that says that a regime in addition to medication can help delay the progression of the disease consisting of:
Social Interactions, Creative and Intellectually Stimulating Activities
With the coming escalating incidence of AD occasioned by the growing numbers of Baby Boomers coming of Senior Age and folks living longer there is likely to be a catastrophic burden placed on Health Care and the overall Cost of Care.
Finding a Cure is possible but needs time for discovery. The increase in Care of Early Stage will help to buy that time and save the intolerable expense of not doing it.
The presentation ended with a plea for help made to the people in attendance and the public at large to give those of us in Early Stage affected by AD more help designed to prolong our stay in Early Stage. We are competent and able to do a good deal of the work but we absolutely need the assistance and the organizational skills of the Care Community.
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/