33 Things People Affected by Alzheimer’s Wish Others Understood

Every 67 seconds, someone in the U.S. develops Alzheimer’s disease, according to the Alzheimer’s Association. It is now the sixth leading cause of death in the country. Because the condition is so prevalent, we figured it’s time to clear up some of the misunderstandings surrounding it. The Mighty teamed up with Hilarity for Charity, a part of the Alzheimer’s Association, to ask our readers affected by Alzheimer’s disease, what they wish the world could understand about it.

This is what they had to say:

1. “It’s not a part of getting older. There’s a misconception that as you get older you become forgetful and Alzheimer’s is just a continuation of aging, but it’s not. It’s a terrible disease, not a part of aging. It’s not something that’s inevitable or just happens. It’s something we’re trying to fight to bring awareness to because with funding and research there can be hope.” — Stephanie Vasquez

2. “Be patient with those who suffer. Repeating and forgetting require compassionate responses, not exasperated ones. The disease might hide the person underneath, but there’s still a person in there who needs your love and attention.” — Jamie Calandriello

3. “I wish people understood how scary it must be for the person going through it.” — Tbird O’Leary

4. “The disease is still progressing… even though helpful medication exists, there’s still no cure, and we have to keep fighting to find one.” — Sally Noelle

5. “Just because he looks fine at this moment doesn’t mean it will be the same in five minutes, tonight or tomorrow.” — Nikki Dodson

6. “[People with Alzheimer's] can’t change the way it makes them act anymore than a cancer patient can keep the cancer cells from spreading.” — Brandyn Shoemaker

7. “I wish the world knew how heartbreaking it is to stand beside the woman who was the first one to ever call you by your name and realize she doesn’t know who you are. I wish they knew the joy it brings when she suddenly looks up at you after you’ve sat there for hours massaging her hands with lotion and says, ‘I love you, kid.’ It’s extremely hard to mourn the loss of my lifetime companion, my mother, while she’s still alive.” — Nancy Elizabeth Faram

8. “Rational thinking is gradually lost with Alzheimer’s, so don’t try to reason with someone with this disorder. Instead, distract them in as gentle a manner as possible. If they get angry or defensive, listen until they’ve said what they need to say. And remember, each time you interrupt or argue, you increase the duration of the conversation without resolving the issue.” — Rex Bierley

9. “It’s not simply forgetting things and people. It’s delusions, hallucinations, anger, poor judgment and personality altering. These things can come and go and the person suffering and their loved ones are on a continual and unknown roller coaster.” — Kimberly Crawford Bowman

10. “They’re not doing this on purpose.” — Denise Christy Reich

11. “The reality of this disease is that there’s no remission, there’s no stopping it, there’s no slowing it down, there’s no cure and there are no survivors.” — Suzanne Tackett

12. “One moment there’s clarity, and they look at you lovingly and say your name. A second later, they look at you frightened or confused because you look familiar or they don’t know you at all.” — Samwise Gamegee Works

13. “Even though behaviors have changed — the person you remember is still in there.” — Roxzan Sukola

14. “It’s an epidemic.” — ljsharp

15. “It’s not just memory loss. It robs the person of who they are and the ability to do the most basic tasks.” — Janice La Bella

16. “Losing some memories doesn’t make the still present ones any less important and meaningful.” — Molly Halla

17. “I wish people wouldn’t ask how my mom is doing or if she’ll get better. I wish people understood that Alzheimer’s is currently a terminal disease and that caregivers have to watch their loved ones waste away in front of their eyes. It’s often a painful thing to discuss [because] every time they ask, the person is worse than before.” — Michelle Raza

18. “[It's] devastating when a person who helped raise you completely forgets who you are.” — Odalys De Leon

19. “The caregiver, much like with any disability, carries a huge load. They need our support and love.” — Walking With Drake

20. “It’s not your fault.” — Rain Mom

21. “It’s the worst. People can’t handle it so they stay away. It’s isolating and lonely.” — Lisa Begley

22. “Although your loved one may not remember you or might do things that frustrate you, this is the time when he or she needs you the most. Your loved one needs you to care, to advocate, to be patient, to love and to be vigilant. Don’t turn your back on them.” — Angie Nunez Merryman

23. “I wish doctors would realize that the person with Alzheimer’s has thoughts and feelings about their care. Look the patient in the eye instead of talking to a family member and asking them questions as if the person who has Alzheimer’s isn’t there.” — Cynthia Adams McGrath

24. “You can’t explain what it’s like to mourn someone who’s still alive unless you’ve experienced it firsthand. It truly is the long goodbye.” — Jessica Seay-Soto

25. “[It's] important to remember those who are suffering from Alzheimer’s as they were before the disease and to keep that person in mind when learning to cope with the disease.” — alib13

26. “The person who has Alzheimer’s knows that pieces of the puzzle are missing, and they are terrified.” — sheilamcphierasak

27. “To lose a loved one is always sad, but losing a loved one bit by bit is so sad. It’s horrible to watch someone you love struggling to find words and trying to remember things they realize they should know. You feel so helpless seeing someone looking lost, and you try to take away that fear.” — Jeanette Maxwell

28. “I wish people understood the unique experience of grief and loss that comes with Alzheimer’s. My dad was 64 when he was diagnosed, and we’ve been living the loss of him for four years now, even though he is still in our presence. I can still hold my dad’s hand, but I miss him every day.” — Anna Copley

29. “Alzheimer’s patients are people, not patients. They are husbands, wives, brothers, sisters, bosses, employees, sons and daughters, all of whom were robbed of time and the ability to continue to chase their dreams and live their lives freely.” – nicoleadeline

30. “Referencing ‘The Notebook’ doesn’t mean anything to me. [My mother] not recognizing me is the least of my worries because she no longer knows how to swallow.” — fancyy77

31. “It can happen to anyone, young and old… my dad was 49 when diagnosed.” — karli_anne1012

32. “I wish other people would understand that the person affected by Alzheimer’s is not a child or a toddler, as I have heard people casually say to me. Yes, they have childlike qualities, but people have to understand this individual is still an adult, and you can’t treat them as you would a kid. My mom can notice when she’s not getting the respect she deserve.” — a11ofthelights1832

33. “They may not be able remember who we are, but they feel us just the same.” — Amanda Dillon

For Alzheimer's patients, resveratrol brings new hope

By Carina Storrs, special to CNN

(CNN)Over the years, resveratrol, an antioxidant found in grapes, chocolate and red wine, has been touted as a possible antidote to Alzheimer's disease, cancer, diabetes and many other conditions. Now, the first study in people with Alzheimer's suggests that the compound, when taken in concentrated doses, may actually have benefit in slowing progression of this disease.

Researchers at 21 medical centers across the United States looked at the safety and effectiveness of taking high doses of resveratrol in an experimental pill -- equal to the amount found in 1,000 bottles of red wine -- in people with mild to moderate Alzheimer's.

The researchers looked at several biomarkers of Alzheimer's, and found that people who took up to four pills a day for a year had higher levels of amyloid-beta proteins in their spinal fluid than those who took a placebo (control) pill.

Although accumulation of amyloid-beta in the brain is a hallmark of Alzheimer's disease, patients actually have lower levels of this protein outside of the brain. The study finding suggests that resveratrol could help change the balance from amyloid-beta buildup in the brain to circulating protein in the body.

Even if concentrated forms of resveratrol pills like the kind used in this study were available, it's too soon to recommend going out and getting some just yet.

"The study is encouraging enough that we should certainly go ahead and do a [larger] clinical trial because we showed that it is safe and does have significant effects on Alzheimer's biomarkers," said Dr. R. Scott Turner, professor of neurology at Georgetown University Medical Center and lead investigator of the study, which was published on Friday in the journal Neurology.

The main goal of the current study, which included 119 patients, was to find out whether high doses of resveratrol could be safe. The only small concern they found was that patients taking resveratrol lost about two pounds during the one-year study, and weight loss is already a problem with Alzheimer's, Turner said. In comparison, the control group gained about 1 pound.

Much more research is needed

The study was not big enough to answer some important questions, such as whether patients taking resveratrol actually had lower levels of amyloid-beta plaques in their brain, and most importantly, whether they experienced less decline in their mental faculties.

A large, phase 3 clinical trial getting at these issues could start in as soon as a year, Turner said. (The current study was a phase 2 trial, typically meant to evaluate safety and get an early look at efficacy of a new drug.)

Related: Is Alzheimer's disease preventable?

Even for the relatively small number of participants in the study, the researchers did see indication that resveratrol could improve cognition. Patients in this group had slight improvements in their ability to carry out daily tasks, such as remembering to brush their teeth. And anecdotally, patients who took resveratrol told the researchers that they felt like they were maintaining their mental ability. (Neither the participants nor the researchers knew who was taking resveratrol and who was taking placebo.)

"To really get a better feel of how effective this could be you really need to do larger studies for longer periods of time (such as several years)," said James A. Hendrix, director of global science initiatives at the Alzheimer's Association, a research and advocacy organization. "Other potential therapies we've had had some early exciting results and then they didn't pan out in later trials," he added.

If resveratrol does pan out in further research, it may add to the medications that are currently available, such as Aricept and Exelon, which slow, but do not halt, progression of the disease, Hendrix said.

Ultimately, it will probably be a combination of several drugs, as well as diet, exercise and social and mental stimulation that help stave off the rapid mental decline that is often associated with Alzheimer's, he added.

Antioxidant may be most effective in combination

This is one of the first studies to look not only at these biomarkers, but also the metabolites of resveratrol in spinal fluid, to show that resveratrol is probably getting into the brain, said Dr. Giulio M. Pasinetti, who is the Saunders Family Chair and professor in neurology at the Icahn School of Medicine at Mount Sinai. However, he added that changes in biomarkers may not necessarily lead to mental and behavioral improvements, which larger studies will address.

In addition, resveratrol on its own might not end up working as well as a combination of resveratrol and other polyphenol compounds found in red wine, grape juice and grape seed extract, which could help people at risk of Alzheimer's and those who already have mild symptoms, Pasinetti said.

Related: Healthy diet may improve memory, says study

The current study used high doses of resveratrol to increase the chances that enough of the compound got into the brain to have an effect. But for now, the best way to get resveratrol is probably through diet. One glass of red wine a day could help those with mild Alzheimer's, "but no more than that," Turner said.

There is probably little benefit in taking currently available resveratrol supplements, even if they claim to contain levels similar to the ones used in this study. "The things that are on the market are not regulated, and you don't know how much is in them," Turner said. "There could be 500 milligrams, which is what they advertise [researchers gave participants in the study four 500 milligram pills a day] or there could be zero," he said.

Previous research has suggested that people who consume diets rich in resveratrol do not have lower rates of cancer, heart disease and other conditions.