When someone has Alzheimer’s disease (AD), it affects everyone in the family, including children and grandchildren. The books, brochures, articles, and websites on this list can help children and teenagers cope when a family member or friend has AD. These resources may also help parents learn how to talk with their children about AD.
Some of the resources listed below are free; others must be purchased. To buy an item, please contact the organization listed in the "available from" section of the description. Contact information was correct at the time this list was published. However, before you send payment for an item, please confirm that the price and payment information are current. Many items are also available from retail and online booksellers.
The items in this resource list are organized alphabetically into three categories:
Scacco, L. Washington, DC: Magination Press/American Psychological Association. 2005. 48 p. (ages 6-10)
Available from Magination Press Order Department, P.O. Box 92984, Washington, DC 20090-2984. (800) 374-2721; (202) 336-5510. Website: www.maginationpress.com. PRICE: $9.95 softcover, ISBN 9781591473121; $14.95 hardcover, ISBN 9781591473114.
This colorful, 48-page book tells the story of young Daniel and his grandfather, who has Alzheimer’s disease (AD). Daniel’s grandfather is a fisherman and a storyteller, and he lives in a cottage by the sea. Daniel and his mom spend every summer with Grandpa. Daniel loves these times spent playing baseball, walking on the beach, and hearing Grandpa’s stories of his days and nights on a fishing boat. But this summer is different. Daniel’s grandfather has AD, and Daniel is about to learn what this means for both Grandpa and himself. A “Note to Parents” at the end of the book offers advice for helping children deal with common emotions and reactions to a loved one with AD.
Johnson, J.L. New York, NY: Vantage Press. 2005. 39 p.
Available from online and local booksellers. ISBN: 9780533149902.
This illustrated storybook is designed to help children deal with the changes that occur in loved ones who have Alzheimer’s disease (AD). The story is about Madison and her grandmother, who have a very special bond. Madison loves to visit her grandmother in the country. Together they read stories, go on walks, or just sit on the swing and talk. When her grandmother begins to forget things and ask strange questions, Madison is worried and frightened. Her mother explains that Grandma has AD. Saddened by the news, Madison watches her grandmother interact with her mother and grandfather. Then the arrival of a special gift gives Madison and her grandmother the chance to reconnect.
Rosenbluth, R. Brooklyn, NY: Flashlight Press. September 2005. 32 p. (ages 5-9)
This illustrated children’s book tells the story of David and Grandma Rosie, who has dementia and whose unpredictable behavior threatens to embarrass him in front of a new friend. Ruben Plotnick is the coolest kid in David’s class. One day, he invites himself over to David’s house. David worries about what Rubin will think of his Grandma Rosie and her weird behavior. Grandma Rosie is an awesome checkers player, but sometimes she knocks over the board when arguing with Grandpa Nate, who died 5 years ago. Her favorite thing is dancing, so whenever she calls out, “Nate, let’s waltz,” the nearest family member puts an arm around her waist and waltzes her around the room. What will happen if she suddenly wants to dance while Ruben is visiting? To David’s great relief, when Grandma Rosie calls out, “Nate, let’s dance,” Ruben steps up and gallantly dances around the kitchen with her. David learns that Ruben is not just the coolest kid, he also has the warmest heart. He also discovers the importance of looking beneath the surface to really get to know someone.
Gerdner, L., Langford, S. Walnut Creek, CA: Shen's Books. 2008. 32 p. (ages 5-10)
Available from the Shen’s Books, 1547 Palos Verdes Mall #291, Walnut Creek, CA 94597. (800) 456-6660; (925) 262-8108. E-mail: email@example.com. Website: www.shens.com. PRICE: $16.95. ISBN: 9781885008343.
This illustrated storybook was written to help Hmong children gain a compassionate understanding of Alzheimer’s disease (AD). Presented bilingually in English and Hmong, it tells the story of Chersheng and his elderly grandfather, who has dementia. Grandfather is starting to forget little things like turning off the water and big things like Chersheng’s name. Sometimes he even forgets that he is in America now. Chersheng feels sad and helpless when he learns that Grandfather has AD, but then Chersheng’s mother gives him a story cloth stitched by Grandfather himself, embroidered in the Hmong tradition. Through the story cloth, Grandfather’s memories of his life in Laos come alive. Inspired by Grandfather’s tales about his life, Chersheng comes up with a plan to capture his family’s new life in America with his own art project. This way, they can all remember that their love is stronger than AD, no matter which country they live in. Includes a 4-page discussion guide for parents, teachers, and health care providers.
Swallow, P.C. Brookfield, CT: Roaring Brook Press. 2003. 192 p. (ages 8-12)
Available from Macmillan, 175 Fifth Avenue, New York, NY 10010. (646) 307-5151. E-mail: firstname.lastname@example.org. Website: http://us.macmillan.com/RoaringBrook.aspx. PRICE: $6.99 softcover, ISBN 9780312561147; $15.95 hardcover, ISBN 9780761317908.
This book is the story of a girl whose dog is nearly killed by an elderly driver with Alzheimer’s disease (AD). On the first day of 7th grade, Kat’s beloved dog, Cheddar, is run over by Mrs. Lawrence. Kat is so worried about Cheddar that she leaves school on a “borrowed” bike to go to the veterinary hospital. When the bike is stolen from outside the hospital, her troubles worsen. Meanwhile, Mr. and Mrs. Lawrence ask Kat to visit. Although Kat is angry and doesn’t want to meet them, she realizes that Mrs. Lawrence is very confused and doesn’t remember what she did. After the visit, Kat’s mother explains about AD. Kat finds out that Mrs. Lawrence, who was not supposed to drive anymore, found the car keys and drove the car in a confused state when she hit Cheddar. As her friendship with Mrs. Lawrence grows, Kat begins to think that maybe everything will be all right again.
Chicago, IL: Alzheimer's Association. 2004. 2 p.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601. (800) 272-3900; (866) 403-3073 (TDD). E-mail: email@example.com. Website: www.alz.org. PRICE: free online access at www.alz.org/national/documents/topicsheet_kids.pdf (PDF, 130K).
This fact sheet is designed to help young children understand Alzheimer's disease (AD). It uses word games, puzzles, and simple text to explain how AD affects a person and why people with AD sometimes act confused, scared, or angry. The fact sheet also explains how caring for someone with AD affects the family and suggests ways to help children cope with their own feelings about the situation, participate in activities with the person who has AD, and remember special times spent with that person. Suggestions include making a memory box and asking questions about what is happening.
Available from the Alzheimer Society of Saskatchewan, 301-2550 12th Avenue, Regina, Saskatchewan, Canada S4P 3X1. (306) 949-4141. E-mail: firstname.lastname@example.org. Website: www.alzheimer.sk.ca/english. PRICE: free online access at www.alzheimer.sk.ca/english.
This website is designed for young people who have a family member with Alzheimer’s disease (AD). It provides information about AD and the brain and introduces the DoRight Kids, four cartoon characters who have a family member with AD. Users can help them “DoRight” by working through the activities on the website, including games, puzzles, and quizzes. There is also information about how to help a family member with AD, a story corner with jokes and audio books about a grandparent with AD, information about a Canadian school program that teaches students about AD, songs to sing with the family member who has AD, ideas for arts and crafts projects to do together, and a children’s dictionary of terms.
Los Angeles, CA: Alzheimers Association California Southland Chapter. 2005. 4 p.
Available from the Alzheimers Association California Southland Chapter, 5900 Wilshire Boulevard, Suite 1100, Los Angeles, CA 90036. (800) 272-3900; (323) 938-3379. Website: www.alz.org/californiasouthland. PRICE: free print copy.
This colorful, bilingual (English/Spanish) booklet was developed to teach children about Alzheimer’s disease (AD) and how they can help a relative with the disease. It explains how AD affects someone and reassures children that you can’t get AD from a hug or being close to another person. It also suggests things children can do with their relative, such as looking through photo albums, making a memory box, helping around the house, matching socks, gardening, going for walks, and listening to music. The booklet includes activities, such as connect-the-dots, word scramble, word search, find-the-differences, and picture-matching games that feature AD-related terms and concepts.
Steinkellner, E. New York, NY: Skyhorse Publishing. 2012. 32 p.
Available from Sky Pony Press/Skyhorse Publishing, 307 West 36th Street, 11th floor, New York, NY 10018. (212) 643-6816. Website: www.skyponypress.com. PRICE: $16.95 hardcover. ISBN: 9781620872239.
This book tells the heartwarming story of Fini, a young girl who discovers and learns to accept the changes in her grandmother, who has dementia. After Granny moves in with her family, Fini at first is puzzled by her grandmother's sometimes strange and childlike behaviors. For example, at the park Granny eats the bread crumbs instead of feeding them to the birds. But Fini gets used to her "new Granny" and learns how she can help her mother and the new aide, Agatha, take care of her. The text captures the thought process of children, while simple yet evocative illustrations paint a realistic picture of how to cope with dementia in a family.
Altman, L.J. New York, NY: Lee & Low Books, Inc. 2002. 28 p.
This book tells the story of 9-year-old Tamika and her grandmother, Momma Lou, who has Alzheimer's disease (AD). Every Sunday, Tamika visits Momma Lou in the nursing home. She does not know much about AD except that it makes Momma Lou forget things. Tamika wants to find a way to help Momma Lou get her memory back. She uses photographs, school yearbooks, movie ticket stubs, newspaper clippings, songs, and other mementos to help Momma Lou remember important times in her life. She enjoys learning about her grandmother's life and sharing the memories with her.
Schnurbush, B. Washington, DC: Magination Press/American Psychological Association. 2006. 32 p.
Available from Magination Press Order Department, P.O. Box 92984, Washington, DC 20090-2984. (800) 374-2721; (202) 336-5510. Website: www.maginationpress.com. PRICE: $9.95 softcover, ISBN 9781591474760; $14.95 hardcover, ISBN 9781591474753.
Libby and Nana love to read stories and color pictures together. They garden in the spring and feed the songbirds. But Libby notices that Nana is forgetting the words in books. She’s also mixing up the names of birds. And she’s wearing clothes that don’t match. Libby doesn’t know what’s going on. When Libby’s parents tell her about Alzheimer’s disease (AD), she begins to understand what is happening to Nana. With their reassurance and help, she finds ways to be with Nana and still do the things they love. This full-color picture book includes notes from a clinical psychologist to guide parents who are helping young children cope when a family member has AD.
Perry, C. Fayetteville, NY: Centerpeace Press. 2004. 32 p.
Available from online and local booksellers. PRICE: $12.95. ISBN: 0975592807.
This illustrated storybook is designed to help children understand what is happening to their loved ones with Alzheimer’s disease (AD). It tells the story of a mother who develops AD and the loving care given by her daughter. On the day her daughter was born, the mother plants a small rose bush near a well. As time passes, the woman watches both her daughter and the rose bush grow. After a storm uproots the rose bush, the mother and daughter replant it and secure it with rope and wooden stakes. The mother tells her daughter that the fallen rose bush is like a person who needs help. Many years pass and the rose bush grows strong. The little girl becomes a mother herself. The mother ages, too, and develops AD. She forgets many things, including the rose bush and her own daughter. But the daughter still loves her and cares for her, as her mother cared for the once-fallen bush long ago. The book comes with a one-track CD containing a lullaby, “Promise,” written by the author and performed by vocalist Linda Stout.
Shriver, M. New York, NY: Time Warner Book Group. 2004. 41 p.
Available from online and local booksellers. PRICE: $15.95. ISBN: 0316001015.
Journalist, author, and First Lady of California Maria Shriver tells the story of Kate, a young girl whose grandfather has developed Alzheimer’s disease (AD). Grandpa has always been the best storyteller Kate has ever known, but lately he seems different. He repeats himself, becomes easily frustrated, and then one day, he even forgets Kate’s name. When Kate’s mother explains that Grandpa has AD, Kate is overwhelmed. What will happen to him? How do her mom and Grandma feel about it? Will others in her family get sick, too? How will she explain it to her friends and younger siblings? Kate sets out to explore these questions and to find a way to cherish her Grandpa’s life and memories. In doing so, she creates a bond between them that will last forever in their hearts.
Knowlton, L.L. Honesdale, PA: Boyd's Mill Press. 2006. 32 p.
Available from online and local booksellers. PRICE: $15.95. ISBN: 9781590782590.
This illustrated children’s book tells the story of a young boy who has a hard time adjusting to the changes in his grandmother caused by Alzheimer’s disease. Grandma Ronnie loved to dance with her grandson while cookies baked in her oven. Now she lives in a nursing home, where she sits in a wheelchair and plays bingo. She doesn’t remember the cookies or the name of her grandson. But Grandma Ronnie remembers how she loved to dance. Seeing Grandma Ronnie like this is hard for her grandson, and he doesn’t like visiting. But his mother helps him understand that Grandma Ronnie is still his grandmother. One day when they visit, a band is playing at the nursing home. That’s when her grandson remembers Grandma Ronnie twirling him around her living room, and he thinks of a way to let them relive those loving moments.
Available from the Alzheimer’s Foundation of America, 322 Eighth Avenue, 7th floor, New York, NY 10001. Phone: 866-AFA-8484. E-mail: email@example.com. Web site: www.afateens.org. PRICE: Free online access.
This website for teenagers, a branch of the Alzheimer’s Foundation of America, seeks to raise awareness of Alzheimer’s disease (AD), offer support for teens in families affected by AD, and involve youth in Foundation activities. Founded in 2002 by a high school student, the website lists ways to get involved in AD advocacy, hosts a bulletin board, and announces Foundation news and events. The section on information and coping contains articles on topics such as “Someone I Love Has Alzheimer’s Disease,” “How Do I Talk to People with Alzheimer’s Disease?” “What Will I Tell My Friends? Can Friends Still Come Over?” and “What/Who Can Help Me?”
Bethesda, MD: National Institute of Neurological Disorders and Stroke. 2007. 5 p.
Available from BRAIN, P.O. Box 5801, Bethesda, MD 20824. (800) 352-9424; (301) 496-5751; TTY: (301) 468-5981. E-mail: firstname.lastname@example.org. Website: www.ninds.nih.gov. PRICE: Free print copy on request and free online access at www.ninds.nih.gov/disorders/brain_basics/know_your_brain.htm.
This illustrated brochure presents basic information about the human brain. It describes how the healthy brain works, how to keep it healthy, and what happens when the brain is diseased or dysfunctional. The brain is divided into the forebrain, midbrain, and hindbrain. The hindbrain controls the body's vital functions, such as respiration and heart rate, as well as movements learned by rote. The midbrain controls some reflex actions and voluntary movements. The forebrain enables thought and memory storage. The portions of the brain responsible for thoughts, sensations, and voluntary movements comprise the frontal, parietal, occipital, and temporal lobes. The cerebral cortex, or coating of the brain, is where information processing occurs. The inner brain controls emotional states and perceptions. Structures connecting these major parts of the brain are dendrites, axons, and the axonal sheath, which acts as an insulator. Neurotransmitters help signals move from nerve cell to nerve cell. Neurological disorders that alter the brain's ability to function properly are listed. 7 figures.
Vitale, K.T. North Reading, MA: Cheshire Press. 2011. 139 p.
Available from local and online booksellers. PRICE: $14.95. ISBN: 9780963279781.
Maggie’s Ryan’s life is changing. Her grandmother is acting weird, her father has moved to California, and middle school is almost over. When Grandma is diagnosed with Alzheimer’s disease, the whole family is affected. While Maggie tries to understand what is happening to her grandmother, she also copes with her parents’ divorce. As time goes on, Maggie learns to “roll with the punches” and become a better person. In this journal-style novel for teens, the author reaches into her own experience to tell Maggie’s story.
Leavitt, S. Jonathan Cape, UK: Freehand Books. 2010. 127 p.
Available from Skyhorse Publishing, 307 West 36th Street, 11th floor, New York, NY 10018. (212) 643-6816. Website: www.skyhorsepublishing.com. PRICE: $14.95. ISBN: 9781616086398.
When her mother, Midge, started showing signs of Alzheimer’s disease at age 52, Sarah Leavitt knew she had to record what was happening. She created this graphic memoir to remember her mother as she was before she developed Alzheimer’s and as she changed during the course of the disease. Even as Alzheimer’s took Midge away in a series of losses, she would still cry out with joy when her husband or children came into the room. In this book, Leavitt combines candid text with black-and-white, cartoon-style drawings to share her “tangled” story of a mother and a daughter, and the bond between them that Alzheimer’s could not break.
Anderson, J.L. Minneapolis, MN: Milkweed Editions. 2005. 169 p.
Available from Milkweed Editions, 1011 Washington Avenue South, Suite 300, Milwaukee, MN 55415. (800) 520-6455. Website: http://milkweed.org. PRICE: $6.95 paperback. ISBN: 1571316590.
In this novel for teens, middle schooler Trudy has parents who are older than her friends’ parents—and sometimes mistaken for her grandparents. And if that isn’t enough, Trudy has problems at school. Math class isn’t going well, and her best friend Ashley has ditched her for a new crowd. Then Trudy finds a new best friend and has her first crush on a boy. Just when things are starting to look up at school, Trudy and Ma notice that Pop is acting funny. He forgets to pick Trudy up from school and starts to put groceries in the wrong place. Once Pop is diagnosed with Alzheimer’s disease, Trudy and her mother face some tough decisions.
Cianciolo, P. Marquette, MI: Northern Michigan University. 2010.
Available from the Sociology and Social Work Department, Northern Michigan University, 1401 Presque Isle Avenue, Marquette, MI 49855. (906) 227-2706. E-mail: email@example.com. Website: http://webb.nmu.edu/Departments/SociologyAndSocialWork. PRICE: Free online access at http://myweb.nmu.edu/~pciancio/index.html; free CDs available for high schools in Michigan.
This dementia education curriculum was developed for use with high school students. Module 1, Medical Overview, provides an overview of dementia. Module 2, Impact on Caregivers, explains who caregivers are and what they go through. The module addresses many issues that teenagers, in particular, face and suggests activities and coping strategies they can use. Module 3, Community Resources, explores resources for dementia caregivers in Michigan, such as health and social services. Module 4, Careers, examines career paths and volunteer opportunities for students who are interested in working with older adults.
Available from the Nemours Center for Children’s Health Media, Alfred I. DuPont Hospital for Children, 1600 Rockland road, Wilmington, DE 19803. (302) 651-4046. E-mail: firstname.lastname@example.org. Website: http://kidshealth.org. PRICE: Free online access at www.kidshealth.org/kid/grownup/conditions/alzheimers.html.
This short article, on a website for kids about health, describes Alzheimer’s disease (AD), what happens to the brain in AD, symptoms and diagnosis, and treatment. It also discusses how children might react to a loved one with AD and simple ways to show caring and love for a person with AD.
New York, NY: The Home Box Office (HBO). 2009.
Available from HBO Documentary Films. 1100 Avenue of the Americas, New York, NY 10036. (866) 316-4814; (212) 512-7467. New York, NY 10016. E-mail: AlzheimersProject@cegny.com. Website: www.hbo.com/alzheimers. PRICE: free online access and free Screening Kit at www.hbo.com/alzheimers.
“Grandpa, Do You Know Who I Am?” is part of The Alzheimer’s Project, which looks at groundbreaking scientific discoveries and seeks to increase public understanding of AD research and caregiving. This multimedia public health series is co-presented by HBO Documentary Films and the National Institute on Aging in association with the Alzheimer's Association, Fidelity Charitable Gift Fund, and the Geoffrey Beene Gives Back Alzheimer's Initiative. It includes a four-part documentary film series focusing on science and research, children touched by AD, and people across the United States with AD and their caregivers. “Grandpa, Do You Know Who I Am?,” narrated by Maria Shriver, shows how dementia can affect children and ways in which younger people can relate to older family members with memory problems. Other segments in the series include: “Caregivers,” which highlights the daily sacrifices and successes of people who are primary caregivers of loved ones descending into debilitating stages of dementia; “The Memory Loss Tapes,” which provides personal views of seven individuals living with AD; and “Momentum in Science,” which takes viewers into the laboratories and clinics of 24 leading scientists and physicians who are working on cutting-edge research advances. The Alzheimer’s Project website offers free access to these films, as well as15 short films about scientists involved in research, interactive channels, discussion guides, tips, fact sheets, and an Alzheimer’s Tribute Wall on Facebook. A companion book, The Alzheimer’s Project: Momentum in Science, published by Public Affairs Books and a set of all films on DVD are also available.
NSW, Australia: Alzheimer's Australia. 2005. 2 p.
Available from Alzheimer's Australia, P.O. Box 4019, Hawker ACT 2614, Australia. Website: www.alzheimers.org.au PRICE: Free online access at www.alzheimers.org.au/understanding-dementia/section-6-young-people-and-dementia.aspx.
This fact sheet provides basic information about dementia for children and adolescents. The first part provides a general overview of dementia, who can get dementia, the types problems people with dementia may experience, and how doctors can determine when someone has dementia. The second part explains how dementia can affect children and grandchildren, how kids can help people with dementia, and how kids can handle their feelings about dementia. This website also includes a help sheet for parents and grandparents that explains how young people may be affected when a person they are close to has dementia.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601. (800) 272-3900; (866) 403-3073 (TDD). E-mail: email@example.com. Website: www.alz.org. PRICE: free online access at www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp.
When a friend or family member has Alzheimer’s disease (AD), kids and teens may feel upset, confused, or scared. AD can be puzzling because people who have it often don’t look sick, but their behavior changes in ways that let you know something is wrong. This website provides resources to help kids and teens learn about AD and understand how it affects the individual and the family. An article and an interactive tour, available in English and 13 other languages, explain how the brain works and what happens in the brain of a person with AD. Another resource is a 2-page fact sheet for children that explains what happens to a person with AD and explores the challenges of caring for that person. The website also has a list of 101 activities, like making a scrapbook and looking at family photographs together, that a person with AD might enjoy doing with children. In addition, an online “fotonovella” tells the story of a Latino family going through the phases of awareness, treatment, and care of a family member with AD. Other features include book reviews, videos, and links to other websites on AD.
Chicago, IL: Alzheimer's Association. 2006. 12 p.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601. (800) 272-3900; (866) 403-3073 (TDD). E-mail: firstname.lastname@example.org. Website: www.alz.org. PRICE: Single copy free and free online access at www.alz.org/national/documents/brochure_childrenteens.pdf (PDF, 934K).
This brochure is intended to help parents talk to their children and teenagers so they understand what is happening to a relative with Alzheimer's disease (AD). It outlines the types of emotions children and teenagers may feel about the person with AD, how they might express those feelings, and questions they may ask about AD. It explains how parents can help children and teenagers cope and suggests enjoyable activities they can do with the person who has AD. It briefly describes the help offered by the Alzheimer's Association and lists some of the Association’s resources for children and teenagers.