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

alzheimer's disease quote: It's not a part of getting older.

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

alzheimer's disease quote: The disease might hide the person underneath, but there's still a person in there who needs your love and attention.

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

alzheimer's quote: even though helpful medication exists, there's still no cure, and we have to keep fighting to find one.

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

alzheimer's quote: [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.

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

alzheimer's quote: It's extremely hard to mourn the loss of my lifetime companion, my mother, while she's still alive.

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

alzheimer's quote: It's not simply forgetting things and people.

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

alzheimer's quote: They're not doing this on purpose.

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

alzheimer's quote: 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.

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

alzheimer's quote: Even though behaviors have changed -- the person you remember is still in there.

14. “It’s an epidemic.” — ljsharp

alzheimer's quote: It's an epidemic.

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

alzheimer's quote: Losing some memories doesn't make the still present ones any less important and meaningful.

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

alzheimer's quote: [It's] devastating when a person who helped raise you completely forgets who you are.

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

alzheimer's quote: It's not your fault.

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

alzheimer's quote: People can't handle it so they stay away. It's isolating and lonely.

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

alzheimer's quote: 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

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

alzheimer's quote: 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.

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

alzheimer's quote: The person who has Alzheimer's knows that pieces of the puzzle are missing, and they are terrified.

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

alzheimer's quote: You feel so helpless

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

alzheimer's quote: I can still hold my dad's hand, but I miss him every day.

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

alzhiemer's quote: Referencing The Notebook doesn't mean anything to me

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

alzheimer's quote: the person affected by Alzheimer's is not a child or a toddler

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

alzheimer's quote: They may not be able remember who we are, but they feel us just the same.

What would you add to this list? Let us know in the comments below. 

Visit Hilarity for Charity to learn what they’re doing for Alzheimer’s disease.

*Answers have been edited and shortened. 

33 Things People Affected by Alzheimer's Wish Others Understood
33 Things People Affected by Alzheimer's Wish Others Understood


When I was 7 years old, my grandmother was diagnosed with Alzheimer’s disease. I’m the oldest of her four grandchildren; my brother was 4 and my cousins were 4 and 2. When she died, we were 10, 7, 8 and 5 years old, respectively.

four children sitting in front of cake

I remember when my mom told me about my grandma’s diagnosis. She said something like, “Mama is sick now, but we can’t ask her about it.” I’m sure she explained more, but I don’t really remember. If she did explain more, I probably didn’t understand. I still don’t understand.

This is what I remember: I remember watching my grandmother forget every single one of us. I remember watching my grandma forgetting how to talk, and how she only babbled one sound over and over: “toh-toh-toh-toh.” I remember how it looked like she couldn’t hold herself up because she was so slouched over when she walked. I remember the heartbreaking day she had to get a gastro-tube because she couldn’t eat on her own anymore.

young girl with older woman and cat But here are the other things I remember – the things that helped make me who I am, both as a person and as a Board Certified Behavior Analyst (BCBA).

I remember when Mama found $20 on the ground in a parking lot, and I also remember being excited because I thought my mom would let my brother and I split the money. But she didn’t. She said Mama found it, so it was hers. It didn’t matter to my mom that Mama would never buy anything for herself again, that she didn’t talk or that she probably didn’t even know what she found. She found it, so it was hers. She was different, but she was not less. 

I also remember another day; we were in the car. Mom was driving us around Miami. I don’t remember why, but knowing my mom, she was probably just trying to keep us all busy and having fun. Mama was in the passenger’s seat. She was babbling sounds, and I told her I didn’t understand what she was saying. I wasn’t being rude or mean – it’s just that I was about 8 and I didn’t know what else to say. My mom immediately told me not to tell her that and explained that just because we don’t understand her doesn’t mean she doesn’t understand us. She wasn’t being mean or angry either. It was a long time ago, but how I remember it is that she said it in a very matter-of-fact way.

Then, without any more information, she showed me what she meant. She responded and acknowledged Mama’s sounds. In all honesty, they meant absolutely nothing. They weren’t words – they weren’t even parts of words. She was literally babbling. Like a baby. Mama made the same sound over and over (“toh-toh-tohtohtoh”). But, again, that didn’t matter to my mom. What mattered to my mom was that Mama was still a person, and she still deserved what the rest of us deserve. So my mom had a conversation with Mama. My mom saw beyond the babbles, beyond the memory loss, beyond the physical change, beyond the heartbreaking situation that sat next to her. My mom saw only my grandma.

My mom may not even remember these stories, but this is how she taught me to see the world. From Mama’s Alzheimer’s to our other family members diagnosed with autism, cerebral palsy and more… I see a world of people who are different, not less.

I so desperately want to help the rest of the world to see it, too.

In loving memory
Fra Fonseca, “Mama”
January 1937 – October 2000

PS – Thanks, Mom! 

This piece was originally published on The Behavior Station.

As we’ve seen before, time and time againHumans of New York (HONY) knows exactly how to hit us in the feelings.

The outlet that tells the story of New Yorkers, one human at a time, has done it again. This time, HONY hit home with a man’s touching story about memory loss.

humans of new york image of man sitting on a bench with a newspaper
Via @humansofny on Instagram

In a recent HONY post, an anonymous man talks of dealing with the inability to remember specifics about his life as part of an unspecified hereditary condition. He says his memory loss has forced him to withdraw from most social interaction.

Group situations are especially hard because I can’t steer the conversation toward something I can remember,” the man told HONY. “And when I do get stuck, it’s more embarrassing. So I’ve missed weddings. I’ve stopped returning calls.”

man holding newspaper
Via @humansofny on Instagram

Despite this heart-breaking admission, the story has an uplifting angle. The man confides that he has a dear friend who won’t fade into the background.

I do have one friend who won’t give up on me,” the man told HONY. “He calls me from Florida. And if I’m trying to tell him about a bridge, he’ll list off every bridge in New York City until I remember the one that I’m trying to talk about.”

Here’s to true friends — the kind who don’t mind listing some bridges or repeating some things. The kind that can outlast memory.

Read the full post on Instagram here and here

Last week, we asked our readers on Facebook to tell us about some of their favorite books pertaining to disease or disability. We received many wonderful responses and did a bit of literary research, too.

Here are some of the titles you shared, along with some of our own favorites.


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Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic by Martha Beck

Expecting Adam is Beck’s moving memoir of her and her husband, John, and their decision to carry to term their child with Down syndrome. Once Adam is born, he becomes an impetus for a significant change in perspective for the Becks.




Screen Shot 2015-01-15 at 5.29.36 PM Ido in Autismland: Climbing Out of Autism’s Silent Prison by Ido Kedar

Kedar, who has nonverbal autism, was just 16 years old when he published this compelling collection of autobiographical essays. Intended to defy common misconceptions about his disorder, Ido in Autismland demonstrates Kedar’s fiercely brilliant mind and provides readers with incredible insight into the world of autism. A must-read if you or a loved one has nonverbal autism.



Screen Shot 2015-01-15 at 5.41.08 PM A Smile as Big as the Moon: A Special Education Teacher, His Class, and Their Inspiring Journey Through U.S. Space Camp by Mike Kersjes

When one of his students mentions that he dreams of becoming an astronaut, Kersjes decides to take his special education class to space camp. Turns out, this is easier said than done. Kersjes must clear innumerable hurdles before taking the trip, including preparing his students, whose disabilities range from Down syndrome to Tourette syndrome to dyslexia, to spend six days living and training like astronauts.


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The Boy Who Loved Tornadoes by Randi Davenport

When Davenport’s son turned 15, he began demonstrating signs of a serious psychiatric disorder: he suffered horrifying hallucinations, became violent and sometimes didn’t recognize his own family members. Doctors were never able to pinpoint a diagnosis. This beautifully written and profound memoir is an important commentary on the state of the mental healthcare system in the United States.



Screen Shot 2015-01-16 at 2.19.53 PM The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey

After Brodey’s 4-year-old son was diagnosed with a mix of special needs, she found solace confiding in other parents going through the same thing. This collection of honest, personal essays written by moms and dads of children with special needs, addresses topics that will resonate deeply with parents going through similar experiences.


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Don’t Worry, He Won’t Get Far On Foot by John Callahan

This late cartoonist was known for incorporating difficult topics into his controversial, darkly funny works. In Don’t Worry, He Won’t Get Far On Foot, Callahan describes with candor his life after becoming a quadriplegic, his recovering alcoholism and how he continued to find comedy in bleak situations.



On Pluto: Inside the Mind of Alzheimer’s by Greg Screen Shot 2015-01-16 at 3.58.09 PM O’Brien 

O’Brien, an award-winning journalist, was diagnosed with early-onset Alzheimer’s disease at age 59. As a coping mechanism and to keep his mind sharp, O’Brien began meticulously detailing the daily hardships of the disease, chronicling what was happening to him day-by-day for six years. He later turned his notes into this insightful autobiography.



Screen Shot 2015-01-16 at 3.55.28 PM FICTION

The Speed of Dark by Elizabeth Moon

This science-fiction novel takes place in a futuristic society, where disease and disorders are a thing of the past. Protagonist Lou Arrendale was among the last to be born with autism before the condition was eradicated, and now, he’s faced with the chance to undergo an experimental treatment which could “cure” his autism. But will losing his condition completely change who he is as a person and how he views the world?

Screen Shot 2015-01-15 at 5.47.53 PM Wonder by R.J. Palacio

This bestselling children’s book tells the fictional tale of Auggie, a fifth-grader with a severe facial deformity, who wants nothing more than to be treated like an ordinary kid. The book begins with Auggie’s perspective and later includes that of his classmates, his sister, her boyfriend and others, to create a portrait of a community learning to accept peoples’ differences.





Screen Shot 2015-01-15 at 5.48.49 PM The Curious Incident of the Dog in the Night-Time by Mark Haddon

This mystery novel centers on Christopher John Francis Boone, a 15-year-old boy who knows all the countries in the world and their capitals, as well as every prime number up to 7,057. He also abhors being touched and cannot stand when the different foods on his plate meet. When the neighbor’s dog, Wellington, turns up dead, Christopher must work past his difficulties with people and in interpreting the world around him to uncover the person responsible.

What would you add to this list? Let us know in the comment section below.

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Since 2007, I’ve been placing a Christmas wreath on my parents’ grave. It doesn’t get any easier. As I secure the wreath to the grave, a swell of nostalgia encompasses me. I close my eyes and take in the familiar aroma of pine and memories of childhood come flooding back.

10408598_960403057732_2302712366337560804_n Mom and Dad always made sure Christmas was a special family time. Preparations began two weeks before. Tradition was important. I was raised in Stuyvesant Town in Manhattan with my brother, Bill, and my sister, Jane. Each December, in the center of our neighborhood, a set of beautifully decorated trees were set up. This is where we went to see Santa Claus.

My parents took great care to decorate our windows. One year, Dad used glass wax and cotton balls to simulate a snow scene on the glass. But the tree was the highlight. Dad would walk the streets looking for the perfect one. He’d carry it home, set it in its stand and let it fall into place. He’d decorate it with blue lights and old-fashioned balls. Each one was strategically placed. The biggest deal was the tinsel. No one could do it but Dad. He hung one piece at a time, and if you tried to help, it would be taken back down and rehung.

It was inevitable that I would grow up to cherish Christmas the way I do. My parents didn’t have much, but they made sure we celebrated the holiday in a big way. To this day, my husband, Jim, and I do the same for our children and grandson. In later years, I took over hosting. Mom and Dad came to all the Christmas pageants my children were in and visited for Christmas Eve and Christmas Day.


After a series of strokes and a dementia diagnosis, Mom had to go into a nursing home. My father later joined her after breaking his hip. That year, I purchased a small Christmas tree; they kept it in their room until Dad passed away. He was told it was against the rules to leave the tree lit, so he’d wait until the head nurse went off duty to put the lights on, and set his alarm for the morning so he could turn it off before she returned. That explained why he was so tired during the Christmas season.

It’s funny how the familiar scent of a pine wreath could bring back so many years of fond memories. When I leave their grave, I turn around and look at the wreath and thank God I had Mom and Dad to create the traditions I continue today. I miss them terribly. But I know they’re together and happy that the legacy they began continues on.

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My husband, son, two daughters, son-in-law, and grandson with Santa.

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected]. Hint! Some gifts don’t come in packages.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

194513_10150158545580540_4259971_o (1) I’m 5 years old, sitting cross-legged on the carpet, and beneath an uneven flop of bangs, my forehead scrunches in frustration.

I cannot for the life of me remember where Piglet is hiding.

In front of me lay playing cards, all facedown, concealing two of every “Winnie the Pooh” character. The goal is simple. Find the pairs. Flip two cards over and remember their location so later you can match two Tiggers or two Poohs or two Roos. Whoever finds the most pairs, wins.

My Pop Pop sits across from me. His green sweater vest matches his eyes, and his tan corduroy pants match the sunspots on his head from summers at the Jersey Shore and winters in Florida. He has less hair than most people but more sweetness. Still, he’s not going to let me win.

I’m taking a long time because a mismatch and subsequent loss would put a dent in my 5-year-old ego. Before my forehead permanently wrinkles and a tantrum erupts, my Pop Pop says this:

“It’s OK if you can’t remember.”

Seven years later, I’m sitting in the living room in our home in Hillsborough, New Jersey, when I overhear my mom on the phone.

“Mom, that’s Dad,” she says. “He’s not a stranger. He’s your husband.”

I’m 12, and dementia doesn’t mean anything to me. (Diseases, I’ve found, don’t mean anything to you until suddenly they mean everything to you.)

“Mom, that’s Bill. You’re married to him.”

The first time you see your parent cry is weird and confusing and devastating — just like Alzheimer’s disease.

A few weeks go by, and my brother and I get home from school and we’re told that 1) Nana and Pop Pop are visiting; 2) Nana may not recognize us; and 3) we’re supposed to go along with this if it happens.

Preteen me is outraged. We can make her remember, I think.

My Nana looks through me when I talk to her and doesn’t hug me back. Everyone pretends as if none of this is happening.

Weird. Confusing. Devastating.

Two years later, I’m sitting on a metal chair in a hallway in Mary Manning Walsh Home, the nursing home in Manhattan where my Nana now resides. My Pop Pop takes the bus uptown every day to visit her. He hates when the nurses dress her before he gets there. He’s labeled her clothing and handles her laundry at home. He tells her stories. He feeds her. He “borrows” extra ice cream cups from other people’s trays because sometimes it’s all she’ll eat.

She can’t talk to him anymore. A series of strokes has reduced her to syllables. She says things like, “La luh, ba da, fa fuh, ka ka,” and he replies with things like, “I love you, Eleanor,” and “You look beautiful today, Eleanor,” and “Yes, I’ll turn ‘The Price Is Right’ on, Eleanor.”


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We’re just visiting for the day, but I’m not in their room because the weirdness and confusion and devastation is frankly too much for me to handle, and I’d prefer to sit among oxygen tanks and wheelchairs and unidentifiable smells.

At one point, my mom and dad go to talk with someone down the hall, and my grandparents are left alone. From my spot, I spy. My Pop Pop holds his wife’s hands, and she riddles off syllables. The cable news plays in the background.

I’m on the verge of tears, but for some reason that early memory of him winning our “Winnie the Pooh” card game finds me, and I regain my composure. I can’t hear what he’s saying to her. I don’t know if her brain knows what she’s trying to say when the syllables come out instead. I don’t know if she even recognizes him.

But I suddenly realize it’s his being there that matters. It’s his long bus rides uptown that matter. It’s his patience and understanding that matter. It’s his chattering and hand-holding and clothing-labeling and ice cream thievery that matter.

I abandon my hiding spot and join them, and I lean into my Pop Pop, and I hold my Nana’s hand, too, and I think, for the first time, It’s OK if you can’t remember, Nana. 

Because we do.

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