Three new priorities, in addition to funding research

The idea: While funding research for a cure is important, it is not enough to face the number of people who will have Alzheimer's in the future. Priorities should shift to supporting people in Early Stage Alzheimer's so they remain self-sufficient.

 

My name is Mike Donohue. I am just short of 75 years old, having been diagnosed five years ago. I have atypical AD. It is A-Typical because it is somewhat different than the norm. My memory is more intact than many, my cognition remains good as does my ability to read and write. Other limitations of the Alzheimer’s kind I do have. These keep me from driving, biking, handling money and doing more than one thing at a time.

The following describes the spectrum of Needs of those of us, myself included, who are Afflicted with Dementia, and those close us Affected by our Dementia. It emphasizes the help we need to get through this difficult journey we face having Alzheimer’s disease or Dementia. Much is and has been done by many groups National and Local, supporting the needs of all of us affected by dementia. They have however been primarily involved with raising funds to do research to find a cure.

Facing exponential growth in the disease which will continue the next 18 years, caused by the so-called Baby Boomers who started reaching their senior years this year, the numbers Afflicted and or Affected by the disease will grow to an Epidemic level. This changes the entire picture of what is needed to combat a burgeoning catastrophe.

Currently raising funds to find a cure is not in itself sufficient to deal with our future. As chaos creeps up on us by acceleration of number with the disease, needing help has escalated in priority. It is this priority that cannot be overlooked.

Currently the priority of effort has gone to raising fund to find the cure. This is important, very important and needs to continue. However, there are other considerations that also have priority of need:

1. Recognition of the effectiveness of increasing support and implementation of programs designed to keep Early Stage Alzheimer’s Afflicted in that self-sufficient and constructive stage they tend to be. (See Delay those people in early stage Alzheimer's from progressing to mid stage for an expansion of this idea.)

2. Promoting alternative ways both by legislation and by support and implementation of programs to economize the cost of care for the individuals required to pay for it.

3. Support and Implementation of programs to provide service to those newly diagnosed, giving them a social service contact of a kind to inform them what to do and how to handle their new and radically different circumstance. This should include some kind of a support system of peers for those diagnosed in Early Stage. Those of us in the Early Stage are the best positioned to help others stay in Early Stage as long as possible. (see Program for first contact with families diagnosed with Alzheimer's for an expansion of this idea.)

My assertions are predicated not only on the personal experience of the impact when first learning “I got it,”  but also look at the economy of dealing with Dementia in the framework of where we are now, where we as a nation and culture, where we are going and the continuing impact that will be there because we “Have It!”

My purpose in writing is to foster quality of life and economy in the cost of care. One way of accomplishing this is to keep us in Early Stage as long as possible. This provides immediate economy in the huge Cost of Care faced by our country in the onslaught of the escalating numbers of people reaching the age of high risk of incidence of this disease.

When it comes to funding and finding cures, a good argument exists: “There is only so much Alz.Org can do.” This is why the lopsided effort to raise funds to find the cure exists. Raising funds for research was the purpose for which Alz.Org was formed according the National Institute of Health (NIH) many years ago. The NIH knew research was needed. The law establishing the NIH did not allow them to raise funds for the research they were mandated to conduct. Therefore, with the help of others they formed the National Alzheimer’s Association and its state tributaries for the purpose of raising money to pay for NIH’s research. (This was stated in an address I attended by an original director of the NIH)

This is fine but!!! A cause now exists for some change in direction. The call for change is for this reason: If this disease reaches the numbers afflicted that normal aging population increase suggests will happen the cost of care incurred privately as well as publically will bust us leaving nothing with which to fund finding a cure.

A corollary to this is: Time for research is as important as funding the cost. The more time given those who have it by staying in early stage increases the chances of discovery by giving research more time to be done. Delaying the process of large numbers of afflicted progressing from Early to Mid-Stage would increase time and delay the financial impact of the cost of care.

Published on 27 September 2011
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