The Dartmouth Memory Handbook

Section 11: For Children And Teens

HELPING CHILDREN UNDERSTAND ALZHEIMER’S DISEASE

From Alzheimer’s Disease Education and Referral (ADEAR) Center The National Institutes of Health – National Institute on Aging
https://www.nia.nih.gov/health/resources-children-and-teens-about-alzheimers-disease
Updated: January 22, 2015

When a family member has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. Giving children understandable information about Alzheimer’s can help them cope with the disease in their family. The type of relationship the child has with the family member and the child’s age are important to help determine: • What information the child receives

• How the information is presented

• The child’s part, if any, in caring for the person with Alzheimer’s disease It is important to answer children’s questions simply and honestly. For example, you might tell a young child, “Grandma has an illness that makes it hard for her to remember things.”

You can help children know that their feelings of sadness and anger are normal. Comfort them. If children express guilt or feel that they may have done something to hurt their grandparent, reassure them that they did not cause the disease.

Do not expect a young child to help care for the person with Alzheimer’s disease. Make sure a child of any age has time for his or her own interests and needs, such as playing with friends, going to school activities, or doing homework. Make sure you spend time with your child, so he or she does not feel that all your attention is on the person with Alzheimer’s.

Help the child understand your feelings. Be honest about your feelings when you talk with a child, but do not overwhelm him or her.

Many younger children will look to you to see how to act around the person with Alzheimer’s. Show children they can still talk with the person, at least in the early stages of the disease. Doing fun things together, with parental supervision depending on the age of the child, can help both the child and the person with Alzheimer’s. Here are some things they might do:

• Walk in the neighborhood

• Do simple arts and crafts

• Play music

• Sing

• Look through photo albums

• Read stories out loud

However, in the later stages of disease, the person with Alzheimer’s may be completely unresponsive. This may be very hard for a child to understand.

Some children might not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be signs that they are upset. You may want to ask a school counselor or a social worker to help a child understand what is happening and how to cope.

A teenager might find it very hard to accept how the person with Alzheimer’s disease has changed. He or she might find the changes upsetting and not want to be around the older person. It is a good idea to talk with teenagers about their concerns and feelings.

Do not force them to spend time with the person who has Alzheimer’s. This could make things worse.

If the stress of living with someone who has Alzheimer’s disease becomes too great for a child, talk to other family members or friends about helping out. Or, find out about, and consider using, respite care options available in your community. Then, both you and your child can get a much-needed break.

For More Information:

Alzheimer’s Disease Education and Referral Center P.O. Box 8250

Silver Spring, MD 20907-8250

1-800-438-4380 (toll-free)

www.nia.nih.gov/alzheimers

The National Institute on Aging’s ADEAR Center offers information and publications for families, caregivers, and professionals on Alzheimer’s disease research, diagnosis, treatment, patient care, caregiver needs, long-term care, and education and training.

Staff members answer telephone, email, and written requests and make referrals to local and national resources. The ADEAR website offers free, online publications in English and Spanish; email alert and online Connections newsletter subscriptions; an Alzheimer’s clinical trials database; the Alzheimer’s Disease Library database (AD Lib); online resource lists; and more.

For more information, see Alzheimer’s Disease Information for Children and Teens: A Resource List; Grandpa, Do You Know Who I Am?, an HBO film; and an accompanying discussion guide to the film.

Alzheimer’s Association

225 North Michigan Avenue, Floor 17

Chicago, IL 60601-7633

1-800-272-3900 (toll-free)

1-866-403-3073 (TDD/toll-free)

www.alz.org

The Alzheimer’s Association offers:

• Just for Children: Helping You Understand Alzheimer’s Disease • Parents’ Guide: Helping Children and Teens Understand Alzheimer’s Disease • Just for Kids & Teens website

Alzheimer’s Foundation of America

322 Eighth Avenue, 7th floor

New York, NY 10001

1-866-AFA-8484 (1-866-232-8484)

www.alzfdn.org

www.afateens.org

Alzheimer’s Disease Education and Referral (ADEAR) Center

A Service of the National Institute on Aging

National Institutes of Health

U.S. Department of Health and Human Services

See also p.267

RESOURCES FOR CHILDREN AND TEENS

ABOUT ALZHEIMER’S DISEASE

From the National Institute on Aging

Alzheimer’s Disease Education and Referral Center

https://www.nia.nih.gov/alzheimers/resources-children-and-teens-about-alzheimersdisease Updated September 2015

When someone has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. This resource list offers a selection of fiction and nonfiction books, articles, websites, and other materials that may help children and teenagers cope when a family member or friend has Alzheimer’s. They can also help parents talk with their children about the disease.

Some of the resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online booksellers.

The items in this resource list are organized alphabetically within four categories: For Young Children:

Always My Grandpa: A Story for Children About Alzheimer’s Disease (by Linda Scacco, 2005, 48 p.)

This picture book tells the story of young Daniel and his grandfather, who has Alzheimer’s disease. Daniel and his mom spend every summer with Grandpa, a fisherman who lives by the sea. Daniel loves the times spent playing baseball, walking on the beach, and hearing Grandpa’s stories. But this summer is different—Daniel is about to learn what Alzheimer’s 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 Alzheimer’s. Published by Magination Press. Phone: 1800-374-2721. Email: [email protected] Hardcover $14.95; paperback $9.95.

Do You Have a Moon at Your House? (by Jeannie Johnson, 2005, 39 p.) This illustrated storybook is about Madison and her grandmother, who have a very special bond. 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. Her mother explains that Grandma has Alzheimer’s disease. The arrival of a special gift gives Madison and her grandmother the chance to reconnect. For ages 6–10.

Available from online booksellers. Hardcover $24.99.

Flowers for Grandpa Dan (by Connie McIntyre, 2005, 32 p.) In this picture book, a family copes with the illness of Grandpa Dan, an avid gardener who has passed on his hobby to his children and grandchildren. An informational page from the St. Louis chapter of the Alzheimer’s Association suggests ways for adults to talk with children about the disease. Available from online booksellers. Hardcover $15.19; paperback $12.53.

Getting to Know Ruben Plotnick (by Roz Rosenbluth, 2005, 32 p.) This illustrated children’s book tells the story of David and his Grandma Rosie, who has dementia. Grandma’s weird and unpredictable behavior threatens to embarrass David in front of Ruben Plotnick, a new friend and the coolest kid in class. One day, Ruben invites himself over to David’s house. When Grandma calls out, “Nate, let’s dance,” Ruben steps up and gallantly dances around the kitchen with her. David discovers the importance of looking beneath the surface to get to know someone. For ages 5–9.

Available from Independent Publishers Group. Phone: 1-800-888-4741.

Email:[email protected] Hardcover $15.95; PDF and ePub, $12.95.

Grandfather’s Story Cloth (by Linda Gerdner and Sarah Langford, 2008, 32 p.) Written in English and Hmong, this illustrated book tells the story of Chersheng and his grandfather, who is starting to forget little things like turning off the water and big things like Chersheng’s name. Chersheng feels sad and helpless when he learns that Grandfather has Alzheimer’s. Then Chersheng’s mother gives him a Hmong story cloth that makes Grandfather’s memories of his life in Laos come alive. For ages 6–10.

Includes a discussion guide for parents, teachers, and healthcare providers. Available from online booksellers. Hardcover $13.21.

Grandpa Doesn’t Know Me Anymore (by Terri Kelley, 2013, 36 p.) When his grandfather moves into his home, a young boy tries to reconnect with the man he knows. When this isn’t possible, the boy promises to always love and take care of his grandpa. Available from online booksellers. Paperback $9.49.

It Only Looks Easy (by Pamela Swallow, 2009, 192 p.) This book tells the story of a girl, Kat, whose dog is nearly killed by Mrs. Lawrence, an elderly driver with Alzheimer’s disease. When Kat visits Mr. and Mrs. Lawrence, she realizes that Mrs. Lawrence is very confused and doesn’t remember what she did. After the visit, Kat’s mother explains Alzheimer’s to her. Available from Macmillan. Phone: 1646-307-5151. Paperback $6.99.

Just for Children: Helping You Understand Alzheimer’s Disease (PDF, 132K) (2004, 2 p.)

This fact sheet uses word games, puzzles, and simple text to explain how Alzheimer’s affects a person and why people with the disease sometimes act confused, scared, or angry. The fact sheet also suggests ways to help children cope with their feelings and participate in activities with the person with Alzheimer’s. Available from the Alzheimer’s Association. Phone: 1-800-272-3900. Email: [email protected] Free online access.

The Memory Box (by Mary Bahr, 1992, 32 p.)

This is the story of young Zach, who spends summers on a lake with his beloved grandparents. When Gramps develops Alzheimer’s, his memory sometimes fails, and Zach has to help him out. Zach and his grandparents start a memory box, a wooden box filled with treasures to help everyone remember the times they shared. For ages 6-9.

Available from online booksellers. Paperback $6.88.

My New Granny (by Elisabeth Steinkellner, 2012, 32 p.) This book tells the heartwarming story of Fini, a young girl who learns to accept her grandmother’s dementia. After Granny moves in, Fini at first is puzzled by her sometimes strange and childlike behaviors. But Fini gets used to her “new Granny” and learns how she can help her mother and the new aide take care of her. Available from Sky Pony Press. Phone: 1-212- 643-6816. Hardcover $16.95.

Remember Me? Te acuerdas de mi? (by Sue Glass, 2004, 32 p.) Written in English and Spanish, this tale is told from a child’s point of view. A little girl whose grandfather has Alzheimer’s disease is confused and upset when he cannot remember her. Her mother tells her about Alzheimer’s and gives the girl a job—to be her grandfather’s memory and remind him about all the fun things they have done together.

Available from Raven Tree Press. Phone: 1-800-323-8270.

Email:[email protected] Hardcover $14.95.

Singing with Momma Lou (by Linda Jacobs Altman, 2002, 32 p.) This book for children age 6–9 tells the story of 9-year-old Tamika and her grandmother, Momma Lou, who has Alzheimer’s disease. Every Sunday, Tamika visits Momma Lou in the nursing home. Tamika uses photographs, school yearbooks, movie ticket stubs, newspaper clippings, songs, and other mementos to help Momma Lou remember important times in her life and to learn about her grandmother’s life. Available from online booksellers. Hardcover.

Still My Grandma (by Veronique Van den Abeele, 2007, 28 p.) Recommended for ages 4–8, this illustrated story describes little Camille’s fun times with her grandmother. When her grandmother develops Alzheimer’s and does odd things, Camille learns about the disease and finds ways to continue their special relationship.

Available from Eerdmans Books for Young Readers. Phone: 1-616-459-4591.

Email:[email protected] Hardcover $16.

Striped Shirts and Flowered Pants: A Story About Alzheimer’s Disease for Young Children (by Barbara Schnurbush, 2006, 32 p.) In this picture book for children ages 4–8, Libby and Nana love to read stories and feed birds together. But Libby notices that Nana is forgetting the words in books, mixing up the names of birds, and wearing clothes that don’t match. When Libby’s parents tell her about Alzheimer’s disease, 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. Published by Magination Press. Phone: 1-800-374-2721.

Email: [email protected] Hardcover $14.95.

The Voice of the Climbing Rose: A Tribute to Caregivers (by Christopher Perry, 2004, 32 p.)

This illustrated storybook is designed to help children understand what is happening to loved ones with Alzheimer’s. It tells the story of a mother who plants a rose bush the day her daughter was born. As time passes, the woman watches both her daughter and the rose bush grow, but she eventually develops Alzheimer’s and forgets many things, including the rose bush and her own daughter. The daughter still loves and cares for her, as her mother cared for the once-fallen bush long ago. The book comes with a CD containing a lullaby. Available from online booksellers. Paperback from $1.25.

What’s Happening to Grandpa? (by Maria Shriver, 2004, 48 p.) This book tells the story of Kate, a young girl whose grandfather has Alzheimer’s disease. Grandpa has always been the best storyteller Kate has ever known, but lately he repeats himself, becomes easily frustrated, and even forgets Kate’s name. When Kate’s mother explains that Grandpa has Alzheimer’s, Kate finds a way to cherish his life and memories. For children age 3–6. Available from online booksellers. Hardcover $15.99.

When My Grammy Forgets, I Remember: A Child’s Perspective on Dementia (by Toby Haberkorn, 2015, 38 p.)

This picture book, told from a young girl’s perspective, reveals the closeness and love between a grandmother and granddaughter as they spent time together. The girl notices changes in her Grammy’s behavior, like how Grammy can’t read to her anymore. The girl’s mother tells her that “Grammy’s brain is not working properly” but assures her that Grammy still loves her. The refrain “My Grammy hugs me tight” becomes “I hug my Grammy tight.” Available from online booksellers. Paperback $12.95.

Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer’s Disease for Children (by Max Wallack and Carolyn Given, 2013, 40 p.) Seven-year-old Julie explains Alzheimer’s to young readers in terms they can understand. Told from a second-grader’s point of view, this illustrated book can help children cope with a relative’s gradual memory loss and new behaviors and learn how to care for a relative in their own way. Available from online booksellers. Paperback $11.53.

A Young Man’s Dance (by Laurie Knowlton, 2006, 32 p.) This illustrated children’s book tells the story of a young boy whose Grandma 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 doesn’t remember the cookies or her grandson’s name. Seeing his grandmother like this is hard for the boy. One day, when a band plays at the nursing home, the grandson finds a way to relive dancing with Grandma. Available from online booksellers. Hardcover $14.26.

For Teenagers

AFA Teens

This website seeks to raise awareness of Alzheimer’s and engage teens in the cause.

For teens with family members affected by the disease, AFA Teens offers an online community with support from experts and the chance to share experiences and connect with each other through a bulletin board and blog. Other features include an e-newsletter and calendar of events. Published by the Alzheimer’s Foundation of America. Phone: 1866-AFA-8484. Email:[email protected] Free online access.

Brain Basics: Know Your Brain

This web page explains the parts of the human brain, functions they control, and how they work, with accompanying figures. It describes the brain’s communications system and lists major neurological disorders that alter the brain’s ability to function properly.

Published by the National Institute of Neurological Disorders and Stroke. www.ninds.nih.gov. Free online access.

Curveball: The Year I Lost My Grip (by Jordan Sonnenblick, 2012, 304 p.) After Peter’s hopes to join his new high school’s baseball team are dashed, he turns to an old hobby, photography. Taught by his grandfather, a professional photographer, Peter spends more and more time with his grandfather and a girl in photography class at school. Grandpa’s forgetfulness and new habits puzzle Peter until he learns about Alzheimer’s. This novel explores friendship, romance, family, and tragedy. Age 12 and up. Published by Scholastic Press. Phone: 1-800-724-6527. Hardcover $12.59; paperback $5.59.

Pop (by Gordon Korman, 2011, 272 p.)

New-boy-in-town Marcus joins the school football team and meets Charlie, a middleaged man who turns out to be retired NFL linebacker Charlie Popovich, “the king of the pop.” Marcus’s rival teammate Troy turns out to be Charlie’s son. This book weaves a tale of intergenerational friendship as Marcus learns that Charlie has early-onset Alzheimer’s—a fact that Charlie’s family desperately wants to hide but that is increasingly hard to ignore. Published by HarperCollins/Balzer + Bray. Phone: 1-212207-7000. Email:[email protected] Paperback $9.99.

Trudy (by Jessica Lee Anderson, 2005, 192 p.) In this novel for teens, Trudy, who is in middle school, has older parents who are sometimes mistaken to be her grandparents. And if that isn’t enough, 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, Pop is diagnosed with Alzheimer’s disease, and Trudy and her mother face some tough decisions. Available from Milkweed Editions. Phone: 1-800-520-6455.

Hardcover $6.95

For All Children

About My Grandfather, About My Grandmother (2007, 6:30) This video features young children and teens from two different families talking about what it’s like to experience a grandparent’s dementia. They discuss how they learned about Alzheimer’s, their feelings during situations that arose, and how they responded.

Produced by the Alzheimer’s Society. Free online access.

Alzheimer’s Disease (2011)

This short website article for children describes Alzheimer’s disease, what happens to the brain, symptoms and diagnosis, and treatment. It also discusses how children might react to a loved one with Alzheimer’s and simple ways to show caring and love.

Published by the Nemours Center for Children’s Health Media. Free online access.

https://kidshealth.org/en/kids/alzheimers.html

Grandpa, Do You Know Who I Am? (2009, 30:48)

This film is part of The Alzheimer’s Project, which looks at groundbreaking scientific discoveries and seeks to increase public understanding of Alzheimer’s research and caregiving. Narrated by Maria Shriver, it tells five stories of children ages 6–15 whose grandparents have Alzheimer’s. It shows how dementia can affect children and how children can relate to older family members with memory problems. An accompanying discussion guide (PDF, 318K) is designed to help start family and community conversations between kids and adults about the film and about Alzheimer’s disease. Produced by HBO Documentary Films. Free online access at https://www.hbo.com/alzheimers/grandpa-do-you-know-who-i-am.html Information About Dementia for Young People (PDF, 152K) (2012, 2 p.) This fact sheet provides basic information about dementia for children and adolescents.

The first part provides a general overview of dementia, its symptoms, and diagnosis. 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.

Includes a list of downloadable publications. Available from Alzheimer’s Australia. Free online access at https://fightdementia.org.au/sites/default/files/helpsheets/HelpsheetAboutDementia05-InformationForYoungPeople_english.pdf

Kids & Teens

This web page links to several videos, fact sheets, and other materials to help young people understand Alzheimer’s disease, how it affects the brain, and how to cope with a family member’s diagnosis. It links to the Alzheimer’s Association’s “Brain Tour” and related websites, as well as resources for parents to help them talk to children about Alzheimer’s. Includes videos for kids and teens.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: [email protected]

Free online access at

https://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp For Parents and Adults Who Work with Children

After a Diagnosis of Alzheimer’s: Libby’s Story (2011, 3:49) In this video, Libby explains how she told her grandson about her diagnosis of Alzheimer’s disease and “made memories” with him. Produced by the Alzheimer’s Association. Free online access at https://www.youtube.com/watch?v=jSqhpBhTaz8 Helping Kids Understand Alzheimer’s Disease (2012, 2 p.) When a family member has Alzheimer’s, it affects everyone in the family, including children and grandchildren. This tip sheet suggests ways to help children and teenagers cope with their feelings and find ways to spend time with the person with Alzheimer’s.

Published by the National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: [email protected] Free online access at https://www.nia.nih.gov/alzheimers/publication/helping-kids-understandalzheimersdisease

Parents’ Guide: Helping Children and Teens Understand Alzheimer’s Disease (2013, 11 p.)

This brochure is intended to help parents talk to their children and teenagers so they can understand what’s happening to a relative with Alzheimer’s disease. It outlines the emotions children and teens may feel and how they might express them, as well as questions they may ask. The brochure also suggests activities kids can do with the person with Alzheimer’s and other ways parents can help kids cope. Published by the Alzheimer’s Association. Phone: 1-800-272-3900. E-mail: [email protected] Free online access at https://www.alz.org/documents/national/brochure_childrenteens.pdf When the Brain Fails to Do Its Work: Dementia Education for High School Students (2010)

This four-part dementia education curriculum for high school students includes an overview of dementia, information about caregiving, community resources in Michigan, and career paths and volunteer opportunities for students interested in working with older adults. The curriculum addresses many issues that teens with Alzheimer’s in the family may face and suggests activities and coping strategies. Available from Northern Michigan University. Phone: 1-906-227-1000. Free online access at https://myweb.nmu.edu/~pciancio/index.html

(See also p. 263)