This morning over 44 million people in the world greeted the day attempting to make sense of the world around them with a diseased and dying brain. 5.4 million folks in the U.S. alone have been diagnosed with Alzheimer’s disease - and this is yesterday’s statistic. Last year’s best guess. There isn’t even a statistic on us, the feet who walk beside them, impacted right along with them - those of us who serve as guides on this journey.
The Alzheimer's Association predicts by 2025, less then a decade from now, over 7 million in the United States alone, will develop this disease. By 2050, the projection rises to almost 14 million in the United States who will have the specific form of dementia known as Alzheimer’s, barring medical breakthroughs to prevent or cure the disease.
We only thought today’s statistics were staggering.
Until now our loved ones have merely been faceless statistics. Their stories must be told if we expect anything to change. They have a face, as well as a story. #TheyHaveAName I believe there is too much misinformation surrounding this disease. Too much misunderstanding. Many people are shocked to learn this disease, which apparently results in folks forgetting who we are, is terminal.
The average life expectancy for those with Alzheimer’s disease is 8-12 years. Due to the length of the disease and the extensive care it requires (the need for supervision occurs very quickly) the cost for caring for a loved one with a disease of dementia is staggering. This year in the U.S. it is estimated $226 billion will be spent caring for folks with this disease. The impact on families bearing the weight of this responsibility is enormous.
Funding for research is essential.
Alzheimer’s disease is the sixth leading cause of death in the United States, yet receives only a fraction of funding others do, such as heart disease and cancer. I am so thankful for my family members and close friends whose lives have been spared because of advancements in treating heart disease and cancer. I look forward to the day this can be said about Alzheimer’s disease as well.
Research has been key in the advances made in other areas and will also be key in understanding Alzheimer’s disease. Unfortunately, my parents are lost - there will be no cure for them. I have reconciled myself to this fact. I am fighting for the next round of victims. I am standing in the gap because I can - the next round of footprints will be consumed when this disease strikes their family. We must form an army in their defense.
After decades of watching my loved ones suffer, we still have very little understanding and nothing which will cure or prevent the occurrence of this disease. Because we do not have answers, too many look to those affected, assuming they did something wrong to cause this mysterious ailment. This is a disease, not a mental illness, and certainly not caused from the lack of crossword puzzles.
Understandably, we have been hiding in the shadows, attempting to make sense of this senseless disease as we maneuver our way through the next set of issues - another day of surviving this crisis. I must admit, after almost 12 years of bracing myself for the next blow, I am tired. Strangely, I am even more exhausted from simply surviving. I am tired of merely existing in this disease. I am heartbroken for the millions waking up today with these insurmountable obstacles and I want answers for them!
I am on a mission to seek answers and will travel to our Nation’s Capital to tell our stories and request the help we desperately need. In the days ahead I will be sharing our stories and details of this journey with you. Encouragement and hope is not lost unless we give up - and that simply is not an option.
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #WashingtonDC #CapitolHill #HOPE