Today, June 21st, is, of course, the longest day - more sunlight and bright light than any other day of the year in the northern hemisphere. The Alzheimer's Association recognizes that for caregivers and those with Alzheimer's and other dementias, the Longest Day may very well be every day. As these diseases progress, the cognition of the loved one diminishes as the needs expand and grow. What once took just a few minutes, like putting on shoes, for example, can turn into a wrestling match of a half hour. I naturally recommend that you abandon any shoe-putting-on to a very short time. If you are having to force and shove, wedge and push, anxiety will surely increase making the task harder and perhaps even impossible. Resolve that the shoe task is ridiculous and then revert to slippers, simple slip-ons, or bare feet if appropriate. Making life simpler is an excellent way to decrease stress and confusion.
Your community probably has events planned in conjunction with the Alzheimer's Association. These activities fund Alzheimer's research through generous donations from individuals and groups. Contact me to learn more about our Arts and Crafts Extravaganza tomorrow and our Sprint Triathlon July 4th or visit www.adf-winnemucca.com
If a group event is not to your liking, try some random acts of kindness for someone (or someones!) you care about - a walk, lunch out, a shopping spree, an ice cream cone. You can truly light up the life of someone who is isolated, lonely, and in need of personal connection. Caregivers and those receiving care both deserve special recognition and thoughtful gestures.
Friday, June 21, 2019
Friday, June 7, 2019
Do Drug Companies Have an Obligation?
It was recently reported the Pfizer discovered that their drug, Enbrel, an anti-inflammatory used to treat rheumatoid arthritis ,appeared to lower the risk of Alzheimer's disease by 64%. This is a staggering number, especially when you consider that there are over 6 million people in the US diagnosed with this disease and that this number increases every day. With no cure, no prevention, and no reversal drugs currently available, doesn't it seem like a large pharmaceutical would leap at the opportunity to have a powerful effect on the lives of so many?
Instead, Pfizer decided not to release their findings. In fact, as quoted from the Washington Post, "Enbrel could potentially safely prevent, treat, and slow progression of Alzheimer's disease." However, a clinical trial would cost at least $80 million, and so the subject was dropped. It is one thing to decide that the trial was just too expensive; it is quite another to have the research available and refuse to release it, to just stay quiet about this potential miracle.
Does Pfizer have a moral obligation, an ethical responsibility to release their information? With 500,000 new diagnoses of Alzheimer's disease every year it just seems right to share this remarkable discovery with other scientists and drug companies. Perhaps because Enbrel's patent is expiring soon the company did not see the possibilities of profits, even against the capital outlay for clinical trials. I'd guess that they would have reaped billions had they worked to uncover a cure.
Should someone fearing Alzheimer's disease begin taking Enbrel? Currently there is not enough evidence to support beginning this drug regime, however, at the very least, I hope Pfizer will reveal all of their research findings so that a cure for this dreadful disease can be found.
Instead, Pfizer decided not to release their findings. In fact, as quoted from the Washington Post, "Enbrel could potentially safely prevent, treat, and slow progression of Alzheimer's disease." However, a clinical trial would cost at least $80 million, and so the subject was dropped. It is one thing to decide that the trial was just too expensive; it is quite another to have the research available and refuse to release it, to just stay quiet about this potential miracle.
Does Pfizer have a moral obligation, an ethical responsibility to release their information? With 500,000 new diagnoses of Alzheimer's disease every year it just seems right to share this remarkable discovery with other scientists and drug companies. Perhaps because Enbrel's patent is expiring soon the company did not see the possibilities of profits, even against the capital outlay for clinical trials. I'd guess that they would have reaped billions had they worked to uncover a cure.
Should someone fearing Alzheimer's disease begin taking Enbrel? Currently there is not enough evidence to support beginning this drug regime, however, at the very least, I hope Pfizer will reveal all of their research findings so that a cure for this dreadful disease can be found.
Thursday, June 6, 2019
Final Decisions and Hospice Care
Our guest presenter at our last Alzheimer's Support Group, Olyna Hughes, shared many ideas for making end-of-life easier, calmer, less painful, and meeting the requests and desires of the one who is passing away. With discussions in advance, especially during the early stages of Alzheimer's disease and other dementias when cognition is fairly stable and engaged, family members, friends and neighbors, physicians and first responder, can ease one into death without unnecessary drama, arguments, or confusion.
The first step is completing a POLST. This legal document works in every state and takes over for advance directives when the individual is no longer able to make medical decisions. Completed and then signed by a physician, PA, or APN (and sometimes RNs), this hot pink paper cannot be reproduced, is binding, and lasts until the end of life. Have I completed one? No, not yet. My excuse is that I rarely visit a doctor; my promise is to add it right now to my "to do" list right now. (I just did!)
As someone dies from Alzheimer's disease or other dementias, the trail may long, confusing and treacherous as the loved one melts away day by day over what may be many, many years. When this person can no longer speak for him/herself, it is gratifying to know that wishes have already been stated - orally and in writing - which along with the POLST insures that heroic measures such as unnecessary surgery and medications, intubation and other mechanicals, can be halted before they happen for making the end of life better.
Why the concern? When EMTs and emergency room staff are called, their job is to save a life - regardless of the wishes of a life-threatening disease. Once they start, it is difficult to put an end to medical procedures. Then even more heart-wrenching decisions may ensue as a loved determines to stop a breathing machine or other medical apparatus. Being wise in advance is terrific!
The first step is completing a POLST. This legal document works in every state and takes over for advance directives when the individual is no longer able to make medical decisions. Completed and then signed by a physician, PA, or APN (and sometimes RNs), this hot pink paper cannot be reproduced, is binding, and lasts until the end of life. Have I completed one? No, not yet. My excuse is that I rarely visit a doctor; my promise is to add it right now to my "to do" list right now. (I just did!)
As someone dies from Alzheimer's disease or other dementias, the trail may long, confusing and treacherous as the loved one melts away day by day over what may be many, many years. When this person can no longer speak for him/herself, it is gratifying to know that wishes have already been stated - orally and in writing - which along with the POLST insures that heroic measures such as unnecessary surgery and medications, intubation and other mechanicals, can be halted before they happen for making the end of life better.
Why the concern? When EMTs and emergency room staff are called, their job is to save a life - regardless of the wishes of a life-threatening disease. Once they start, it is difficult to put an end to medical procedures. Then even more heart-wrenching decisions may ensue as a loved determines to stop a breathing machine or other medical apparatus. Being wise in advance is terrific!
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