Lesson #30: Less Lies, More Love

Caregivers are on the front lines of the Alzheimer’s battle. And the battle isn’t about the disease, it’s about the stigma, negativity and fear surrounding it. If you or someone you love has Alzheimer’s, it’s quite likely that you have come up against a lot of ignorance, misconceptions, dread and horror when talking to people about this condition.

My recent and very unpleasant encounter with a so-called “experienced” paid caregiver was a wake-up call. I can see why the general public is confused. But people who work in the field and who have daily contact with seniors… if they are spreading misinformation, that’s a big problem.

As a medical writer, I’m happy to keep you up to date on dementia research. I’m highly motivated to do so, because almost half of us baby-boomers are going to have some form of dementia as we age. If I end up under your care, I want you to be informed and enlightened, and I want everyone I love to benefit from the best care possible – which does not include being inappropriately drugged, restrained, ignored or put in front of a loud television.

So here are the salient facts that we all need to know and share, as of April 2018:

  1. Alzheimer’s is one form of dementia. There are many. Basically, all dementias involve a degenerative loss of cognitive function, including the memories stored in our brains (but not our emotive memories).
  2. We don’t know what causes Alzheimer’s. The current thinking is still circling around toxins (from the mercury in our teeth to the aluminum in our deodorant and the air we breathe), inflammation (seems everything is about inflammation these days), stress (cortisol is a real killer, in more ways than one), genetics, lifestyle, nutrition and head injury.
  3. There is no cure for dementia/Alzheimer’s. And while Big Pharma has been targeting plaques and tangles for over a decade with no success to speak of, they are still hammering away at this. For now, suffice it to say there is NO CONCLUSIVE EVIDENCE that the plaques and tangles either cause or confirm the presence of dementia. We know there’s a link, but it’s still a mystery at this point in time.
  4. Big Pharma is gearing up to leverage the money invested in connecting dementia to plaques and tangles – even though it looks like these drugs are a lost cause. Now they’re going to try to convince us that, if “treated” earlier (as in, you’re 50 years old, you have no symptoms, but you’re terrified of losing your mind) with the drugs that have already failed, this might work in preventing dementia. I sincerely hope that people wait until more evidence is found. Otherwise, an entire generation of baby-boomers will be taking expensive, harsh drugs with absolutely no proof that they will work. And how will we know if they work until decades down the road? Proceed with caution, would be my advice.
  5. One of the things that doesn’t get a lot of coverage (because there are vested interests in not revealing these facts) is that the prescription drugs many seniors are currently taking or have taken may ALSO be contributing to dementia. Some of the evidence points to anti-cholesterol drugs (aka Lipitor), drugs for hyperactive bladder (aka Detrol), and Tylenol, widely recommended for everything under the sun. These drugs have all been linked to dementia. The worst thing happening, unfortunately (and I’ve had personal experience of this with my mother’s doctor), is that doctors put seniors on these drugs and never take them off. As one example, if you have high cholesterol, your doctor may prescribe a drug to reduce your levels, but he or she should also encourage lifestyle changes and get you OFF the drug as soon as possible.
  6. HERE’S THE GOOD NEWS THAT NEEDS TO BE SHARED: In terms of being proactive, making lifestyle and nutritional changes can go a long way towards protecting and maintaining our brain power. Exercise, meditation, continuous learning, less stress, healthier eating (less meat, more plants, no chemicals or processed sugar), positivity and socializing have all been pegged as powerful ways to guard against dementia. If you have a concern about getting dementia, this is a great place to start.

It’s important to understand the link between fear and the media. Our society is addicted to drama, and the media knows this. They want us to read their content and click on their links, to ensure revenue from advertisers. They do this with strong, shocking headlines that prey on our fears and hopes. Please do not spread information without verifying its accuracy, and evaluate where your funds are going before donating to charity.

Speaking of charity…
As dementia becomes more prevalent and widespread, everyone is going to have their hand out for your money. From unscrupulous caregiving businesses (exploiting families and short-changing caregivers), badly managed or understaffed residences, shady mock associations and fund-raising events, look before you leap.

#MoreHugsLessDrugs
Just as we now know that people in comas can hear us, people with dementia, even if they can’t communicate with us, are still there and present emotionally and soulfully. Even with brain dysfunction, they are loving, breathing people who deserve our care, compassion and empathy.

Finally, contrary to popular opinion, people with dementia do not “disappear” or “fade away.” Nor do they wander or rage/rant inappropriately. They may be cognitively impaired, but they are just like anyone else, in that they want their freedom, their friends and loved ones around, and the right to live life on their own terms, as much as possible, with support from community and the health care world.

I’m proud to be a front-line worker in this battle. Caregivers should be informed, aware and ready to dispel any misinformation being spread. I’m happy to do research for my readers, and I welcome your insights as well.

Knowing the truth has meaning only as a first step to living the truth, day by day.
– Nancy Pearcy

 

 

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