We all hope never to endure having our minds slowly diminished and devoured by dementia, but the odds of that are worse than you might know. In fact, there's about a 40% chance that your brain will self-destruct while you're in your 80s. Your chances of developing dementia increase steadily every year.
Almost 13% of those aged 65 and older already have Alzheimer's disease, which is only one of many forms of dementia. As the Baby Boomers age, the number will increase astronomically.
This coming, unprecedented surge threatens to overwhelm individuals, families, medical systems and budgets. Years ago, we undertook a massive research campaign for HIV/AIDS, successfully developing treatment and prevention strategies. If we are to avert the looming catastrophe posed by dementia, we must increase research funding for it in the same way.
At the peak of the AIDS epidemic, 600,000 to 900,000 Americans had the disease. Now, more than 5.4 million Americans are known to be living with Alzheimer's. Many more dementia sufferers go undiagnosed, and Alzheimer's is the sixth leading cause of death in our country.
Many people believe that dementia is a benign experience for patients because "They don't know what is happening to them." Nothing could be further from the truth. Neurodegenerative diseases work by destroying the mind. Yesterdays disappear, except those long ago, creating a circumscribed life in a prison of fear. Without memory we become lost. We lose our identity. It is like being slowly eaten alive.
Dementia sends us back to an elemental world of abject insecurity and frustration, where even the simplest things are difficult because they are unrecognizable. As Thomas DeBaggio, author and Alzheimer's patient wrote, it is "A malady of slow, writhing death, a secret torture in the head."
Eventually there is a descent into silence and dependence on caretakers. Hands other than yours change your diapers, feed and bathe you, at their convenience and on their terms. The terrified patient is often treated as a child. This stigmatizing degradation subjects patients to eviscerating daily humiliations.
No one should have to endure this but sadly, 40% of us who live past 80 will.
The caretakers who will be responsible for us as we descend into silence and dependence are young and middle-age families. They will sacrifice their own lives and livelihoods to such an extent that by the time we die, 72% of them will feel relief, according to a 2006 study published in The Gerontologist. In the early stages, family members provide about 21 unpaid hours of care per week. By the end, round-the-clock care is necessary, forcing family members to reduce working hours, take unpaid leave, or quit their jobs.
In 2011, the medical costs of American dementia patients will come to $183 billion. The care provided to them by family and other unpaid caregivers was valued at $202 billion, for a total annual cost of $385 billion, according to the Alzheimer's Association. Unless effective treatment and prevention can be found, by 2050 the number of Americans with dementias will triple to nearly 16 million, while the medical costs of caring for them will balloon to $1.1 trillion per year, more than double the total current Medicare budget.
The National Institutes of Health annually spend more than $6 billion on cancer research, more than $4 billion on heart disease research and more than $3 billion on HIV/AIDS research, but only $480 million on Alzheimer's research. According to leading researchers, including professors Bruce Miller of the University of California-San Francisco and Ottavio Arancio of Columbia University, increasing this amount to $1 billion each year for the next decade would be sufficient to develop methods to treat, prevent or cure most dementias. While increased funding cannot guarantee these results, severely underfunding research will certainly impede them, costing hundreds of billions in treatment and caregiving for every year of delay.
The explosion in health care costs is the single greatest threat to our nation's fiscal health. Failing to fund dementia research would be shortsightedness in its most extreme form, even in this time of immensely difficult budget choices. Unless sufficient resources are immediately made available to find ways to treat and prevent neurodegenerative diseases, the Baby Boomers will become a huge burden upon taxpayers and families alike, devastating the young financially even as they themselves are destroyed from within.
The need is urgent, and time is running out.
A version of this article first appeared in USA Today on Wednesday, 16 March 2011.