Stories of Alzheimer’s Symptoms, Statistics: Amyloid Diseases

How many people does Alzheimer’s affect? Learn about Alzheimer’s statistics and symptoms by following fictional life stories, illustrated by age progression. Explore The Emergent Universe, an online interactive science museum about emergence.

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Age: 20s

Alzheimer’s is a disease that destroys the neurons in the afflicted person’s brain. Over time, the afflicted person will progressively lose brain function, typically starting with a loss of short term memory and culminating in the loss of physical coordination.

Seven of ten persons with Alzheimer’s live at home, and five of ten are cared for entirely by family and friends. And, of the estimated 7 million unpaid Alzheimer’s caregivers in the US, nearly 20% are young adults aged 18-34.

Age: 40s

An estimated 5 million persons in the US had Alzheimer’s in 2008. That’s nearly one person out of every 60 people.

While Alzheimer’s most typically strikes persons older than 65, some 5-10% of all cases involve an earlier onset. About half of these early onset cases are familial, meaning that they are passed genetically from parent to child.

Age: 70s

As Alzheimer’s progresses, neuron damage tends to spread throughout the cortex area of the brain in predictable ways. As a result, at each stage of Alzheimer’s, typical symptoms reflect loss of the brain functionality associated with the damaged areas. For example, the hippocampus, which is associated with short term memory formation, is usually damaged first, explaining why forgetfulness is a key symptom of early Alzheimer’s.

Age: 80s

As of 2004 in the US, Alzheimer’s has officially become the 4th leading cause of death among those 85 and older, and the 7th leading cause of death overall. The true numbers of Alzheimer’s related deaths are probably higher, since such deaths are often officially attributed to associated causes, such as pneumonia.

Finally:

As of 2008:
1 out of every 8 persons over 65 has Alzheimer’s
1 out of every 2 persons over 85 has Alzheimer’s

The occurrences of Alzheimer’s and deaths in this activity approximately reflect actual statistics. Statistics were compiled and computed from US CDC Life Tables (2004), US CDC Leading Causes of Death (2008), US Census Bureau Tables on Population (2000-2005) and on Marital Status (2006), and the Alzheimer’s Associations annual Facts and Figures report (2008).

Their Stories

Alyssa

20s:

Pearls. In class, on the running track, at the school pub. They’re Alyssa’s signature, and she’s never seen without them. Thanks to an alcoholic mother, Alyssa knows exactly what she wants: success, money, the good life. And she’s making it happen, yes sir-ee. Suma Cum Laude, Phi Beta Kappa, an econ and philosophy double major, she’s now eating law school for lunch. And while her budget’s still tight right now – well, not so tight she can’t have her triple soy latte every morning, or take-out Chinese every Friday – Alyssa knows it’s only a matter of time before luxury will be hers.

40s:

Given Alyssa’s intelligence, motivation, and never-ending willingness to work 16 hour days, it’s no surprise she made partner in her corporate law firm by 45. And while Alyssa’s still fueled daily by a triple soy latte, she now savors the view from her penthouse suite, the feel of accelerating her BMW, and the stir she creates – thanks in part to a religious running regimen – when she attends the opera wearing her signature pearls. She even makes frequent trips to Paris and Rome with her sometimes lover, Fortune 500 financier Jonathon Evans. Yep. Alyssa defines success. Yet she still keeps all of her childhood dolls on a shelf in her room and is known to drink a bit too much at company parties.

70s:

Since retiring from her law firm, Alyssa’s kept herself busy by donating reduced fee legal services to fledgling businesses. She enjoys the variety of legal challenges provided by this frequently changing clientele. Oddly, though, Alyssa is finding she has to take more notes than in the past, because sometimes she can’t seem to remember a client she’s met before. And she’s started making little directional cheat sheets for herself, because sometimes she forgets where she’s going. Very odd. Like when she suddenly can’t come up with the word for something really trivial, like a cellphone. Quite annoying, really. But after all, she is 75, and she still looks great in her gray suit and pearls.

80s:

Alzheimer’s. That’s what the neurologist said, back when Alyssa finally had to give up law because there were so many holes in her thinking that she just couldn’t see her way through a case anymore. Apparently this disease had been destroying her brain: first her short term memory and her words, then her ability to reason. Next she’d be losing her ability to understand speech and process perceptions. God. Who was she becoming? Who would she be without her intelligence? What would people think, and who would take care of her?

Five years later, Alyssa’s nurse at the upscale Alzheimer’s facility smiled when Alyssa proudly displayed a set of pearls draped over her left ear. Although Alyssa now has little connection with reality and is unable to use language, she still takes great joy in showing off her pearls and acting the role of a society lady.

Ben

20s:

Ben rocks the blues on his sax, bums cigs from his pals after gigs. He’s been trying to quit smoking for years now, but every time he sees a Golden Retriever he finds himself buying another pack. Golden’s – Ben’s grandpa used to breed them, and Ben loved those dogs. But grandpa got Alzheimer’s and couldn’t remember to feed them. Not only did they have to get rid of the dogs, but grandpa came to live with them, and Ben’s mom was so busy caring for her father that she didn’t even notice when Ben started with cigarettes. Ben tried to talk to his grandpa about the dogs, and it worked at first, but gradually grandpa talked only about dogs from when he was a kid, and then he stopped making any sense at all. So Ben stopped trying.

40s:

Twenty years later, Ben’s still trying to quit smoking. And still bumming cigarettes after gigs, of which he’s been playing more and more. Tired of his job modeling internet traffic patterns, Ben’s been working hard with his new band. They’ve recorded 2 CD’s and are getting some college radio airplay. Ben is finding it hard to find enough time to spend with his two young sons and their Golden Retrievers, but he loves watching the youngest, Jeff, trying to teach the dogs to count.

70s:

At 65, Ben finally retired his sax after 7 successful US tours. He settled near his kids, who, of course, now have lives of their own and no time for him. He finally quit smoking, and raised a pack of Golden’s with quirky names like Alto and Allegro. He died from lung cancer at 76.

Jasmine

20s:

Jasmine doesn’t know why this is, but total strangers invariably pour their hearts out to her. It’s just one of those things – she’s always made everyone feel like they’re her best friend. Not an un-useful talent in the restaurant business; in fact, it’s why she’s been the hostess at her family’s restaurant since she was 16 while her younger sisters were relegated to chopping vegetables in the kitchen. Jasmine did get away from home; she got her bachelors in comp lit. But she was happy to return, because she really missed the restaurant and her extended family. She’s especially fond of her mother’s youngest sister, the one who introduced her to Kingsolver, McEwan, and other favorite authors.

40s:

Jasmine enjoys the time she spends looking after her grandmother, a task that’s been shared by all the women in the family since Nana was diagnosed with Alzheimer’s. Jasmine actually feels closer to Nana than she did before, because as the disease stripped away Nana’s connection to cultural conventions, Nana became more outspoken, revealing a previously concealed satirical wit.

In the last year Nana’s illness has really progressed, and she’s started having perceptual problems. For weeks Nana was terrified by nightly earthquakes, until Jasmine realized that what Nana was feeling was the rumble of the furnace. Thankfully, moving Nana’s room to the other side of the house solved that problem, but, as her care is becoming more difficult, the family is divided about whether they should move her to an Alzheimer’s care facility.

70s:

At 67, Jasmine finally turned the management of the family’s 5 new and highly successful fusion restaurants over to her favorite niece. She then spent 7 contented years reading to her grand-nieces and nephews, volunteering at the local mobile library, and listening to the life stories of strangers before succumbing to heart failure. No less than 500 people attended her memorial service.

Lauren

20s:

Lauren’s only friends are online. She also loves birds, but she only sees the ones that come to the birdfeeder outside the window. Which isn’t too surprising, since Lauren rarely leaves the house. It all started when Lauren was 15 and her mom got fired from the bank for making math mistakes. Jeez, at the time Lauren couldn’t say anything right. And why did her mom always have to repeat herself? And forget to pay the cashier at the store? How embarrassing was that? Pretty soon Lauren was taking care of all the bills, and the cooking, too, ‘cause her mom would just walk away from a lit stove and forget about it.

When Lauren was 17 her mom was found wandering in a local park, lost, and Lauren had to quit school to care for her full time. The doctors said it was early familial Alzheimer’s – they’d identified the rogue gene in her mom’s DNA – and that it was incurable. And, oh, yeah, that Lauren herself had a 50/50 chance of having inherited the gene and the disease. Just great.

40s:

Back when she was 25, Lauren put her mom in a home, and returned to school to study journalism. When her mom died a few years later, Lauren just wanted out, out, out. So she took a job as a war correspondent. She liked the risk. And being around tragedies worse than her own.

Everything changed when she met TV anchor Jeremy Strong. At 38, with the prospect of marriage and children on the table, Lauren decided it was time to face her worst fear: that she might have inherited her mother’s illness. To Lauren’s great relief, DNA testing showed that she was not carrying the presenelin-1 mutation her mother had. Now, at 45, she’s home in Chicago working as an editor and watching the sparrows while raising her two sons. What a relief to know she won’t be passing familial Alzheimer’s on to them.

70s:

Lauren and Jeremy are both retired, and they spend long hours out in the field birdwatching, where Lauren really enjoys the solitude. She especially loves the diving birds, and loons in particular. Last week they even saw a reclusive least bittern hiding with its beak pointed straight at the sky. When she’s not out with the birds, Lauren donates her writing skills to help raise funds for humanitarian organizations working in war torn countries; she still has nightmares from her war years. And of course, she spends many hours babysitting her grandchildren and teaching them her favorite solitaire games.

80s:

At 84 Lauren experienced sudden severe back pain and was diagnosed with bone cancer. She died 5 days later, survived by Jeremy, her two sons, and 5 grandchildren.

Matt

20s:

Matt spent his college years listening to 70’s punk, reading the business section of the New York Times, partying, and pretty much never going to class. Now he’s working in a bar. Fitting, he thinks, for the family black sheep who could never measure up to his goody-two-shoes, straight A’s older brother Josh. Man, Matt hated being the family scapegoat. Especially how he – never Josh – was always the target of his dad’s rage after their weekly trip to see Gramma at the Alzheimer’s home. It would always start with some delusion of Gramma’s (which Matt usually found sweet). But Dad would have to argue reality with her non-stop, insisting she should know who they were, that her husband was dead, that the people on the TV weren’t really in the room. Of course Gramma couldn’t follow any of these arguments – she’d lost too many of the cells in her brain’s frontal lobe – but she sure knew she was being yelled at, and she’d always end up crying. And then Dad would blame Matt, screaming at him the whole way home. Good riddance to all that.

40s:

Divorced and bored at 30, Matt finally quit the bar scene, ditched his father’s expectations, and went back to school for his MBA. A business savant, Matt moved rapidly into the free-wheeling world of venture capital. Finally, Matt had found his true element.

Then Matt’s father was diagnosed with Alzheimer’s. Not surprisingly, there was no way Matt was moving back to that scene; he wasn’t going to give up his life to help take care of the old man. Which left the entire caretaking burden on goody-two-shoes Josh’s shoulders. And like many Alzheimer’s caretakers, Josh really suffered. He was tired and stressed, and he kept getting sick. His caretaking duties were also causing him to miss way too much work – 3 weeks last year alone. Probably why he got passed up for promotion. Josh wasn’t sure he could forgive Matt for dumping this entire burden on him.

70s:

At 76, Matt’s still a free spirit with a reputation for skateboarding in the boardroom. And he’s finally retiring from his Venture Capital firm. Or so he says – just like he said last year and the year before – so he can spend more time with his second wife, who’s recently retired from her work with the Red Cross. Although Matt made a mint with his VC firm, the two enjoy living simply, with Matt’s biggest extravagance being his stereo system. Every now and then, Matt wonders about his brother Josh, who hasn’t spoken to him in years.

80s:

Matt, who never quite managed to retire, died from a heart attack at 83. After substantial bequests for his wife and brother, Matt’s will dictates that the bulk of his fortune should be used to support research into treatments for Alzheimer’s disease.

Michelle

20s:

Michelle is trying to find a home for yet another cat. She collects strays almost as fast as she collects friends on all her social networking sites. Student government. Cheerleader. English major and sociology minor, she secretly wants to be a writer. But right now, married to Joe, her high school sweetheart, with one teething child and another on the way, she hasn’t the concentration. Besides, it’s enough work to keep the house clean and organized around all those cats …hmmm… maybe her brother’s roommate would take the gray tabby.

40s:

When the household cat population dropped to 3 and her youngest was in high school, Michelle went back and got her master’s in social work. She now loves her job helping battered women at the shelter – she’s always been a rescuer, hasn’t she? – and she feels comfortable with the routine enforced by the shelter’s strict regulations. And while she’s given up rescuing stray cats, she’s not given up on her secret dream to write. So when she and Joe head out to their summer cabin in the pines, Michelle always writes a few lines over her morning coffee while Joe does the crossword puzzle.

70s:

Michelle’s world is collapsing. Something is wrong with Joe; in fact, it’s been going progressively wrong for years now. Joe’s been repeating himself, getting angry at the crossword puzzle, getting angry at her. And Joe won’t talk to her. They’ve always been so close, and now he’s really secretive about everything. In fact, while Michelle’s been trying so hard to hold things together and maintain a vanishing status quo, Joe’s been taking himself to doctors. Last fall he came home with the terrible news – Alzheimer’s.

As Joe’s illness progressed, Michelle had to come to terms with the changes in Joe, changes resulting from his loss of brain cells. Michelle used her writing to help move through her grief over losing the Joe she knew and to learn to meet Joe on his terms, in this new world of his where shadows can be burglars, the edge of a rug a 5 foot drop, and a dot pattern on the floor garbage that needs to be picked up.

80s:

Michelle took care of Joe at home for 5 years. She learned to set up tasks for Joe, like laying out his clothing in order, so that he could still do some things for himself. And she learned to live with him in the moment – Joe responded joyously to Irish music to the end – and to validate his fears.

Since Joe died last year, Michelle has been trying to re-establish a life centered around herself, instead of around Joe’s illness. She spends hours on the porch at their cabin, taking in the stillness and writing her first novel.

Miguel

20s:

Miguel kicks his much maligned trash can across the room instead of putting his fist through the wall, which is what he really wants to do when he gets off the phone with his father. Miguel spent four years driving a bus during the day, waiting tables at night, and dancing when he should’ve been sleeping, and he’s finally where he wants to be: enrolled on scholarship in a modern dance program. But can his father appreciate what it took Miguel to get here? No. All he can do is go on about how “No son of mine is going to go to dance school.” Well, Miguel’s sure showed him. But he really wishes his mom were still alive so she could talk some sense into the old man.

40s:

Miguel finished his dance degree, married a fellow dancer, and together they toured for years with a nationally recognized dance company. After their bitter divorce, Miguel decided to leave the company and try his hand at choreography. He was excited about exploring new types of movement, and he’d recently met an inspiring composer, Anna, who was excited about working with him as well. And, face it, he was tired of the road. He wanted to stay in the same town for more than two weeks at a time.

70s:

Miguel thinks Anna’s the best thing that ever happened to him. She’s been his best friend, his muse, his biggest supporter…and, for the last 20 years, his wife as well. They’ve had an amazingly successful run working together: international exposure, funding from the NEA, even their own dance company. And while Miguel’s friends keep telling him to retire, he just can’t. For him, creating dance is like breathing. He can’t imagine life without it. Just as he can’t imagine life without Anna. His only regret is that he was unable to heal the rift with his father before his father died. Not that he didn’t try, but it still makes him sad.

80s:

As Miguel stares out the window, his new dog puts his head on Miguel’s knee and gives him “walk me” eyes. Miguel’s still grieving over losing Anna, who died last year. He still feels like part of himself is missing. But Anna’s kids from her first marriage have been great: bringing him food, keeping him company, giving him this goofy, demanding dog. He’s also thrown himself into his choreography, which is providing an effective outlet, enabling him to express himself without words. And he finally has the time to study flamenco guitar, something he’s always wanted to do. So, maybe, just maybe, if he just keeps going, if he takes the dog for a walk, life will continue to get better.

Paul

20s:

Every day at 11:45 Paul leaves the motorcycle repair shop, crosses the street to the local diner, and orders the Triple-Bypass Burger and fries to go. Paul’s a CNN junkie, and lunch at his desk gives him a chance to catch up on the latest news. And if nothing’s happening, he reads Nietzsche for the rest of the hour. Paul completed a Poli-Sci degree last year, but found he really prefers working with his hands. So he stayed on at the bike shop where he’s been working summers since he was 17. Besides, it’s a job that allows him the flexibility to pursue his dream of going Pro on the motocross circuit. He’s been racing since he was 11, and he’s finally made “A” class, which means he’s eligible to race in Pro/Am events.

40s:

Paul still has the Triple-Bypass Burger for lunch every day, but he no longer races. He never made Pro, and his knees just can’t take the beating anymore. He also had to quit his job at the bike shop. After Paul’s dad got Alzheimer’s, Paul and his wife Lisa found it impossible to maintain both of their jobs while caring for both Paul’s father and their boys, then 3, 5 and 9. Paul struggles to help his kids understand what is happening to grandpa. He’s explained that when grandpa repeats himself or calls them by the wrong names it’s not because he’s frustrated at them or trying to be annoying, it’s just that his brain doesn’t work right anymore. Paul’s also been trying to find activities that will let his kids connect with their grandpa, like having them trade stories about favorite children’s books and having them create a scrapbook of family pictures together.

70s:

Paul still gets the same burger and fries for lunch everyday. And he’s working in motorcycle repair again, but this time it’s at his own shop. He took out a loan after he and Lisa divorced – his father’s illness was just too big a strain on their relationship. And Paul’s shop’s gotten by ok. They’re even able to sponsor a youth motocross team, which Paul coaches. Otherwise, Paul lives alone, listens to his new-found love, opera, watches CNN and reads philosophy. After a minor stroke in April, Paul’s decided it’s finally time to retire.

80s:

Paul is frequently cranky, demanding constant attention from the aides on his floor at the Alzheimer’s home. Yet Janice, one of the aides, speaks fondly about Paul. As needy as Paul can be, he always does something to make Janice laugh, or takes a moment to thank her graciously. And yesterday, immediately following lunch, he gave a marvelously entertaining and surprisingly coherent account of the history of motocross racing. After which he demanded to know why they hadn’t served him lunch yet.

Paul’s son Derek, who visits regularly, has finally come to terms with Paul’s illness. He’s realized that it doesn’t matter that his father doesn’t recognize him. He can still connect with his father if he’s willing to enter Paul’s world. So what if Paul thinks he’s at the opera or that he has an upcoming motocross race – Derek can still enjoy sharing the moment with his father.

Ryan

20s:

It’s no surprise to anyone that Ryan’s getting his PhD in Robotics. A confirmed geek who quotes incessantly from Blade Runner; I, Robot; and Sponge Bob, “Remember, licking doorknobs is illegal on other planets,” Ryan built Lego masterpieces at 6 and his first robot at 15. Now, he’s studying emergent phenomena, that is, how simple signals between individual robots can generate complex behaviors in swarms of robots. Given Ryan’s childhood fascination with Hitchcock’s “The Birds,” even his current interest in robot swarms seems predictable. Clearly, Ryan’s on the right path.

40s:

Ryan, a Professor of Robotics, had become a world expert in programming robot swarms, and was investigating the potential for using such swarms to assist in post-disaster search and rescue missions. It was thus a great loss to the robotics community when Ryan was killed in a traffic accident on his way to a prestigious speaking engagement in Rome. Ryan is survived by his parents, his wife, his three children, and his 7 current graduate students.

Shawna

20s:

Pink Martini. That’s Shawna’s signature drink, and also her favorite band. Quite appropriate for the local swing dance queen. And she’s got such a crush on her latest partner, Xavier – what a great lead. She’s hoping he’ll ask her out. Although she hasn’t really got the time right now, because she’s working so hard to get through the first year of her materials science Ph.D. program. And trying not to think about the fact that her great grandmother, who’s 92 and has lived with them for as long as Shawna can remember, had to go into a nursing home. With late stage Alzheimer’s, her great grandmother can no longer walk. Shawna feels like she’s about to lose her for a second time – the first time was when the Alzheimer’s took away the person she knew and loved, and the second time will be when her great grandmother finally dies.

40s:

After 19 years of marriage, Shawna and Xav are still madly in love. Xav’s still an amazing lead when they go dancing, which, admittedly, isn’t all that often. Between Shawna’s faculty position at the local community college and raising their girls, Gail and Sharine, there’s just not much time for anything but students and family. In fact, Shawna spends most of her extra time mentoring her students and running programs supporting women and minorities in the sciences.

70s:

Shawna, retired from her physics career, has been living with her youngest daughter Sharine’s family for the past 3 years since Xav died. Since Shawna has middle stage Alzheimer’s, she can’t be left alone. She has a tendency to wander off and get lost, and she can’t get through simple multi-step tasks like brushing her teeth. Except for dancing. Somehow, her feet can remember what her brain cannot.

Shawna’s really frustrated by her feeling of uselessness. She’s been the caretaker for so long – she hates the sense of worthlessness that comes with her failing competencies. And it’s especially bad in the evenings, when the household comes alive with dinner preparation, the kids’ homework, and conversation. Thankfully, Sharine seems to have understood this, and has devised simple tasks that Shawna can do in the evenings to help out and be part of the family, even if she can’t follow the conversation.

80s:

After a 2 year progression through late stage Alzheimer’s, during which she had frequent hallucinations, Shawna died in a nursing home at 78. A very astute aide was able to help Shawna feel connected throughout this late stage, in spite of Shawna’s extremely limited ability to communicate.

Instructions:

  1. Read their stories: Mouse over an individual’s image to read his/her story.
  2. Watch them age: Click on the next point on the aging timeline to find out what happens next.

Resources

Living with Alzheimer’s

An excellent resource, written by an insightful medical social worker, that uses many anecdotal accounts to illustrate how to truly connect with persons with Alzheimer’s: N. Pearce, Inside Alzheimer’s: How to hear and Honor Connections with a Person Who Has Dementia (Forrason, Taylors, SC, 2007).

An informative look into what it’s like to have Alzheimer’s, why Alzheimer’s individuals respond in the ways they do, and how we can most effectively interact with them: J. K. Coste, Learning to Speak Alzheimer’s (Houghton Mifflin, Boston, MA, 2003).

A journalist beautifully recounts how she finds humanity and comes to terms with Alzheimer’s through her work at an Alzheimer’s care facility: L. Kessler, Dancing with Rose: Finding Life in the Land of Alzheimer’s (Viking, NY, 2007).

A candid, insightful first-person account of one woman’s descent into early-onset Alzeimer’s: D. F. McGowin, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s (Delacorte, NY, 1993).

A thoughtful first-person account addressing the complexity of emotional issues experienced by those with Alzheimer’s: R. Taylor, Alzheimer’s from the Inside Out (Health Professions, Baltimore, MD, 2007).

Because it’s written as a resource for teens, this book presents quality information in a straight-up, no-frills fashion: E. Willett, Alzheimer’s Disease, Diseases and People Series (Enslow, NJ, 2002).

The award-winning short video My Name is Lisa presents a story about teens and Alzheimer’s: http://sheltonfilms.com/lisa.html

Personal stories from individuals with Alzheimer’s and their caretakers: http://www.alz.org/living_with_alzheimers_8510.asp

Overview of Early-onset Familial Alzheimer’s: http://www.alzforum.org/eFAD/overview/essay2/default.asp

Statistics

Statistics about Alzheimer’s; updated annually: http://www.alz.org/alzheimers_disease_facts_figures.asp

US life expectancies: http://www.cdc.gov/nchs/products/life_tables.htm

US leading causes of death: http://www.cdc.gov/nchs/datawh/statab/unpubd/mortabs/lcwk3_10.htm

Search Terms

amyloid, amyloid diseases, Alzheimer’s, Alzheimer’s symptoms, Alzheimer’s treatment, Alzheimer’s care, stages of Alzheimer’s

Search Terms for Other Amyloid Diseases

Huntington’s, Parkinson’s, ALS, Lou Gehrig’s Disease, amyloidosis, CJD, prions, mad cow disease, transmissible spongiform encephalopathy, bovine spongiform encephalopathy, BSE, kuru, scrapie

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