I AM ONE of the MANY people who have been or will be affected by Alzheimer’s during the course of my lifetime.
There are an estimated 5.8 million people are living with Alzheimer’s Dementia in the United States. This equates to 1 in 10 people over the age of 65 that are battling this disease. It is believed that by the year 2050 the number of people over the age of 65 will grow to approximately 88 million people. At the rate that we are currently seeing, this equates to another 3 million dementia patients. These numbers only represent those we know who have been diagnosed by a professional.
Because Alzheimer’s dementia is often under-diagnosed — and if it is diagnosed, people are often unaware of their diagnosis — a large portion of Americans with Alzheimer’s may not know they have it.
The disease is not a regional or state problem. Across the board, it is believed that every state will see an average increase of at least 12% in the number of new cases just this year. In South Carolina where I’m from, 92 thousand people are living with this disease. In the next county over from where we live is the famous Death Valley, Memorial Stadium of the Clemson Tigers. This stadium is ranked 19th in the largest stadiums in North America. It is so large that the NFL Team Carolina Panthers used this stadium for their games during their initial years until their stadium could be built. The current capacity of Memorial Stadium is 82,500 which would be an extreme overflow crowd if we put all of the Alzheimer’s patients in it at one time. If South Carolina sees the number of Alzheimer’s patients grow as projected, then we will top the 100 thousand mark, giving us enough people to fill any of the top stadiums in North America. Anyone who has attended a sporting event at a large stadium can surely fathom this magnitude of people.
I AM ONE of the MANY people that have taken care of a loved one that battled this disease. My Grandmother and her 4 sisters all died from this disease. My mom had diabetes and lost her eyesight while caring for my grandmother. Two years later my wife, our children, and I moved back to my hometown to help care for them both. At the same time, we realized that something was different with Nana, as we lovingly called her. Several years later we found ourselves in the doctor’s office trying to explain that we believed there was some sort of dementia problem. The problem was that the doctor didn’t want to acknowledge it. Nana was just starting in her 80’s and it was only a part of life that she was going through, he said. My grandmother was one of the godliest women that I’ve ever known. She was a very proper lady, so when she started using foul language, going outside on the porch at night and squatting in front of God and everybody to go potty, we knew there was a problem. Still, the doctor refused to acknowledge it. Finally, she fell and broke a hip, needing hospitalization. It was there that an attending physician agreed that there was a problem, and she was placed in a nursing facility upon her discharge.
Studies have found that fewer than half of Medicare beneficiaries who have a diagnosis of Alzheimer’s or another dementia in their Medicare billing records (or their caregiver, if the beneficiary’s cognitive impairment prevented him or her from responding) report being told of the diagnosis.
I believe one possibility is that doctors like to be able to heal people. That is why most of them go into the profession, to be part of the greater good of man by improving their quality of life. Diseases such as Cancer and Heart Disease used to be hush words in our society. These words weren’t mentioned because they inevitably would bring about the imminent or prolonged death of the patient. Now we have treatment centers that boast of high rates of cure instead of mortality for both of these diseases.
Alzheimer’s, as well as other Dementia’s, have no cure. We have medicines that have shown some progress in helping some patients, but many others experience a steady decline until they succumb to the disease. As of now, there is no cure.
I AM ONE OF THE MANY diagnosed before the age of 65, thereby giving me the added portion to my diagnosis of Early OnSet. Only 2 tenths of 1 percent of people in the US that have a diagnosis of Alzheimer’s Dementia are under the age of 65–this equates to over 200,000 people.
I feel like I was fortunate enough to have an employer who did their best to work with me for another 9 months after my diagnosis and allowed me to continue my job as an Analyst in the Finance department. My job was to track shipments to customers and research the ones that were not received in full. I had to figure out the possibilities of whether we had failed to ship at all, or caused a problem in the shipping that then created a problem in receiving, or possibly a failure on the customer’s part in the receiving process. I then made attempts to collect where I felt their claim was invalid and wrote reports on the claims that I felt were most likely as a result of something that my company did. Each week I made a presentation before the Presidents, VP’s, CFO’s and Senior Management of all of our divisions to update them on the gains, losses, and problems that could be corrected possibly. It was only after the point that it became evident that I would no longer be able to make any more concise and accurate reports that a mutual agreement was made that allowed me to go on disability.
I feel that there may be many more people who are realizing that their cognitive functions are declining, but because of a misguided fear of being terminated, they have not either sought out a medical diagnosis or if they have, they haven’t notified their employer of the problem. The Family Medical Leave Act and other policies that many companies have to allow for these employees to be able to take the time needed for medical treatment and/or obtain a reduced workload without fear of retribution from the employer. We HAVE to eliminate the stigma of this disease. This isn’t only a disease for people in nursing homes, sitting in wheelchairs, eyes staring aimlessly or lying in beds, babbling senselessly until their life slips away.
People can still be active in society and lead very active lives, though admittedly some changes will inevitably come. My local chapter has programs that allow folks like me to get together and socialize, play games, make crafts, and go on “field trips” to places that are both stimulating and fun. Opportunities for the caregivers are provided also during other times of the month.
I WANT TO BE ONE OF THE MANY who will be the “first” survivors of Alzheimer’s. Research is being done at an increasing rate and there have been some recent studies, that while still in their infancy, may hold a promise of this future one day. Not only cures, but vaccines are being sought to prevent anyone from having to go through this terrible disease. The National Institute of Health, along with many other research facilities are doing their best to find a way to make this happen. The good news for you is that you don’t have to be a doctor to help this cause become a reality one day. YOU can make a difference, and YOU can do it now.
How can I make a difference you ask?
- By standing up and lending your voice. Do you know someone or have experienced the heartbreak of taking care of a loved one that is/was battling this disease? Speak Up to your Friends/Loved Ones! There are plenty of resources that can help you to know how to deal with the disease, and how to be that friend that someone else who is going through this battle needs.
- Speak Up to your Legislators! Tell them you want to see more being done to not only battle this disease but to assist those who are battling this disease. Sometimes the toll on the caregiver can be as great or worse than the toll on the patient.
- Speak Up to the Alzheimer’s Association by being a volunteer. The more people step in and give just a few hours a month, the more that people like me and my wife can be helped as we walk through this journey.
- Lastly, Speak Up to those who are seeking out the cures and prevention for this disease by opening your wallets. It doesn’t take a million dollars to make a difference, though if you feel it in you to give a large amount, this helps accelerate the mission even faster. Each and every dollar adds up.
But most of all, remember that in the end, our ultimate goal is to #EndAlz.