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Reflections of an Alzheimer's Spouse: Frustration

I am frustrated that our nation has not yet made the commitment to fund Alzheimer's disease research properly, and frustration is a difficult emotion to deal with at times.
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I am frustrated with our federal government. Our government knows that we need more money for Alzheimer's disease (AD) research. More than five million Americans are dealing with AD, our sixth leading cause of death in this country. With 10,000 baby boomers turning 65 each day, and with people living longer, estimates are that more than 15 million Americans may have Alzheimer's by 2050. Alzheimer's already costs Medicare and Medicaid more money than any other disease. Putting aside humanitarian reasons, to avoid bankrupting our health system our federal government should be spending much more money on AD research each year. The president and congress agree that research funding should be higher, but federal funding for AD research remains at a relatively low level ... lower than funding for some diseases that already have methods of prevention and treatment, and lower than some conditions that do not always lead to death. The actions of our president and congress simply do not match their words. AD research should be a much higher federal priority.

I am frustrated with our medical profession. Too many doctors continue to rely upon one brief diagnostic test, the Mini-Mental State Examination (MMSE), to screen for Alzheimer's. We used to joke about the MMSE in my support group because so many of us had spouses continuing to score high on that test even after their AD diagnoses. The MMSE was never designed to screen for Alzheimer's and so many more effective diagnostic tests are available. It is also frustrating that many doctors routinely ignore the observations of caregivers, when caregivers can often tell them more than any screening test can possibly reveal.

I am also frustrated with doctors who continue to maintain AD patients on expensive medications year after year even though there is no research indicating that these medications are helpful beyond a year or two at most. Money spent on these ineffective medications each year could be much better spent on day care programs or home health aides, or saved for future needs.

I am frustrated with our national media. Television, radio, magazines, and newspapers could do such a better job of educating our nation about the ever-growing AD epidemic. Whenever there is a health crisis outside of the U.S., the media is all over it with 24/7 coverage. Remember warnings from our Centers for Disease Control (CDC) about the spread of bird flu? SARS? Ebola? 24/7 cable news TV stations ran "breaking news" graphics constantly. But more people die each year from AD than all the people who have ever died from bird flu, SARS, and Ebola combined. It is estimated that more than 40 million people have AD outside of the U.S. Where is the 24/7 news coverage and "breaking news" graphics about the global Alzheimer's epidemic?

I am frustrated with this country's National Football League (NFL). The NFL does wonderful work promoting Breast Cancer Awareness Month each October, but does nothing to promote Alzheimer's Disease Awareness Month in November. This is all the more upsetting since a 2012 study of NFL retirees by the CDC found that "NFL players are three times as likely as the general population to die from a neurodegenerative disease such as Alzheimer's disease or Parkinson's disease." Given that football games are the most widely watched television programs in the U.S. during five months of every year, I can only imagine the audience that could be reached with NFL public service announcements about Alzheimer's disease. I would think that the NFL would want to help raise money for research on a disease that affects many of its own players after they leave the game.

I am frustrated that our nation has not yet made the commitment to fund AD research properly, and frustration is a difficult emotion to deal with at times.

This is the seventh in a series of ten weekly postings sharing emotions I find myself dealing with regularly. It is my hope that these articles will bring some comfort to other Alzheimer's caregivers. After completing this 10-part "Reflections" series, I will have much more to say about each of these four sources of frustration! My next posting, however, will be, "Reflections of an Alzheimer's Spouse ... Loneliness and Sadness."

Readers of this blog are invited to learn more about my journey with Alzheimer's, and read copies of more than 40 of my articles previously published in caregiver magazines, medical journals, and newspapers at If you would like me respond to any comments or have any questions you would like to ask, please email me directly at