Tomorrow is the official start of summer but, more importantly, it is the longest day of the year for those of us in the northern hemisphere. It’s the day with the most light and it has a very special meaning for those who have been impacted by Alzheimer’s.
This month is Alzheimer’s & Brain Awareness Month and June 21st, the summer solstice, is a special day for those who advocate and support the fight against Alzheimer’s; it is labeled “The Day With the Most Light Is the Day We Fight”. This day was chosen to refine the focus on the fight against Alzheimer’s to a specific day.
Usually, I include some statistics about the disease that I’m writing about in my blog. I do that to highlight and educate you about the impact that disease has on our lives. Unfortunately, I really don’t have to do that with Alzheimer’s or other types of dementia, because almost without exception Alzheimer’s or dementia has affected each one of us in some way. Let me tell you about how it has affected me.
I spent over eight years in the Air Force with most of my time as part of a crew in a B-52. Downstairs in a B-52 is where the bombardier and the navigator sit, no windows just radar sets and low light/infrared screens to keep us entertained. That’s where I spent my time. I flew a large part of my 2,000 hours in the B-52 with a man who became a lifelong friend. He was one of six Air Force friends and their wives who have continued to get together every two years for 46 years. He died a little over two years ago from Louie Body Dementia. Louie Body Dementia is an aggressive form of dementia, but it is just one of many different types of this terrible disease. I will use the term Alzheimer’s in this blog since it is the most common type of dementia, but I will use it to also include all of the types of dementia. As is the case with Alzheimer’s you lose the loved one you knew long before their death. It was so hard as I visited, vacationed, and cared for my friend after he was diagnosed because I saw the man I knew and loved slowly disappear. We had to continually say that it was Louie talking and acting rather than the man we knew before. It was especially hard on his wife and family. I suspect that many of you have your own experiences that you could talk about.
As I’ve advocated over the years for more Alzheimer’s research, I’ve often pointed out that Alzheimer’s costs us 300 billion dollars each year with the cost rising each year. This always seemed like such a strong argument for expanded research. After my experience with my Air Force friend the money part, while it remains very important, dimmed somewhat in relationship to the impact on the lives of those who care for those who suffer from Alzheimer’s. The mental, financial, and physical impact of this disease on those around the patient is huge. I don’t think there is any better way for us to spend our time and resources than searching for a cure.
Discoveries of new treatments for Alzheimer’s have been rare, almost non-existent. There have been many promising medicines that have been tested and failed, some of the failures coming at the very end of the clinical trials. It has been heartbreaking to those impacted by Alzheimer’s to have hope and then be disappointed. Just last year a drug was approved that offered some hope. The cost was substantial and, even though the cost was ultimately cut in half, CMS decided that it would only be available to people who participated in clinical trials. While there are many people and organizations on both sides of the question of who should get access to this medicine, the fact of the matter is the hope of a treatment for Alzheimer’s was again dimmed. Just recently a promising drug, named crenezumab, failed in a trial that had been going for 10 years. Once again, the hope for an Alzheimer’s treatment has been dashed, to say nothing of the cost of a 10-year trial. It’s time we take action.
We’ve had government programs that used the “moon shot” moniker to focus commitment and funding. We’ve shown that we can develop vaccines at breakneck speeds when our backs are against the wall. These are all important efforts. I think it’s time we recognize the impact on not only those who suffer from Alzheimer’s but also to the loved ones and care givers by marshaling are personal and government resources to conquer this disease.
As noted above, this is the month and today is the day that we focus on advocating for more research and helping those affected by Alzheimer’s. You can find out what activities are going on in your community during “The Day With the Most Light Is the Day We Fight” project by clicking this link. Get involved, do it for that someone in your life who has been affected by Alzheimer’s.