parent's guide - Alzheimer's Association

parent’s
guide
Helping children and teens
understand Alzheimer’s disease
the compassion to care, the leadership to conquer

what is alzheimer’s?
Alzheimer’s (AHLZ-high-merz) is a disease of the
brain that causes problems with memory, thinking and
behavior. It is not a normal part of aging.
Alzheimer’s worsens over time. Although symptoms
can vary widely, the first noticeable problem is often
forgetfulness severe enough to affect the ability to
function at home or at work, or to enjoy lifelong hobbies.
Other symptoms include confusion, getting lost in
familiar places, misplacing things and trouble with
speaking or writing.
how children and teens
are affected
Alzheimer’s disease can have a big impact on
every member of the family, including children.
Each child will react differently to someone who
has Alzheimer’s.
The young people in your life might have questions
about what is happening. It’s important for you to
answer these questions openly and honestly. It will also
help to share with them the changes the disease might
bring, now and in the future.
Factors that may affect your child
include:
z How your child is related to the person (a parent,
grandparent, relative, friend).
z How close your child is to this person emotionally.
z Where this person lives (in the same home,
long-term care facility, another state).
1 2

Common reactions of children and teens
When a family member is living with dementia,
a child might feel:
z Sad about how the person is changing.
z Curious about how people get the disease.
z Confused about why the person acts differently
or doesn’t recognize him or her.
z Frustrated by the new things it’s necessary to do
like repeating words or phrases.
z Guilty for resenting the time and resources the
person requires of the family.
z Afraid of the different ways in which the person
may act.
z Jealous of the additional time and attention given
to the person.
z Worried that he or she — or other friends and family
members — might also get Alzheimer’s.
z Embarrassed to have friends or other visitors to
the house if the person is there and acts strangely.
z Unsure how to act around the person.
All of these feelings are normal. Keep in mind that
children are also resilient and may respond to the situation
with few problems.
Encourage your child to keep a journal. Writing down
feelings might help bring the child comfort.
It might be difficult to recognize how your child
is feeling. A child who is having a hard time
understanding or accepting the disease might:
z Withdraw from or lose patience with the person.
z Express physical pain, like a stomachache
or headache.
z Do poorly in school.
z Spend more time away from home.
z Stop inviting friends to the house.
z Argue more with others at home, especially those
providing care for the person with Alzheimer’s.
3 4

Make sure your child knows that even though a
person with dementia may be forgetful, love and
kindness are still felt in the moment.
Special issues for teens
Adolescence is challenging in general, and the disease
may bring even more changes to your teen’s life. For
example, you may need to ask your teen to pitch in
more around the house or to assist with caregiving.
Teens may express a variety of thoughts about how
their lives have changed, such as:
z I don’t like to talk with my friends about what’s
going on at home.
z When I help out with my uncle, I feel like my
family really needs me.
z I feel good that I know how to do the little things
that make a difference for my dad.
z Sometimes I feel embarrassed about how my
grandpa is acting.
z I don’t feel comfortable having my friends over
right now.
z I’ve never felt closer to my mom than I do now
because we’re facing this together.
Questions your child might ask
Often the whole family is learning about dementia
together. Your child might not understand the disease.
Encourage your child to ask questions. Answer honestly
and in a way that is easy to understand. Use terms that
match the child’s level of understanding.
5 6

Some questions your child might have:
z What is Alzheimer’s disease?
z Why is Dad acting differently?
z Will Mom get Alzheimer’s, too? Will I?
z Why does Grandpa call me by my dad’s name?
z Will Grandma die from Alzheimer’s?
z Why does Abuelita keep asking the same question?
z How can I help Papa?
z Will my uncle get better?
z Will I get Alzheimer’s if I spend time with Auntie?
z What are some things we can do together?
z Will Grandad forget me?
The Alzheimer’s Association can help you answer
questions and provide suggestions for how your family
can work through changes brought on by the disease.
Keep open lines of communication
Good communication is the best way to help your
child deal with the changes that are happening.
Answer questions honestly
Respond simply to questions in an age-appropriate
way. Try not to sugar coat the message. Children
are excellent observers and often aware if an answer
doesn’t sound right.
Teach your child about the disease
Begin sharing information about the disease and its
symptoms as soon as you can. Encourage your child to
ask questions. Be patient and use words that are easy
to understand.
Reassure your child that just because a person in the
family has Alzheimer’s, it does not necessarily mean
that he or she or other family members will get the
disease, too.
Your child has special memories about favorite times
shared with the person with dementia. Encourage your
child to create and decorate a “memory box” filled with
reminders of those special times.
7 8

Help your child learn more
about Alzheimer’s
Great progress has been made in scientific research. Let
your child know that better treatments and even a cure
could be discovered by the time he or she is grown.
Your child might find comfort in learning more
about the disease and how the brain works. The
Alzheimer’s Association website features a kids and
teens section (alz.org/kids) offering information
and support, as well as videos of other children and
teens facing the disease in their families. You can
also contact the Association for more information
and recommendations for books and other resources
geared toward children and teens.
If your child expresses feelings of helplessness, work
together to find a way to get involved. For ideas,
contact the Alzheimer’s Association 24/7 Helpline
at 800.272.3900.
Let your child know these
feelings are normal
Young people need a way to share their feelings about
having a family member with Alzheimer’s disease. Show
comfort and support by letting them know that those
feelings are normal.
Create opportunities for your child to
express feelings
Make sure your child is getting enough support. Set
aside a regular time to be together. Activities or outings
can create great opportunities for a child to open up.
Prepare the child for changes
Alzheimer’s worsens over time. A person with dementia
may look healthy on the outside, but on the inside, the
brain is not working properly.
Let your child know what changes to expect. Talk
about what those changes will mean for him or her and
your family. Also, make sure your child understands why
you might have less time to spend together.
Let your child know it’s not
his or her fault
Dementia can cause a person to direct confusion, fear
or anger at the child. If this happens, be sure the child
knows the person did not mean to act that way.
People with dementia have good days and bad days.
Make sure your child does not feel responsible for the
kind of day it is.
Those who care for the person with dementia might
sometimes seem tired, frustrated, sad or short-tempered.
Explain to your child that he or she is not to blame.
Inform your child’s teacher and
school counselor
Let them know the ways in which Alzheimer’s disease is
affecting your child and the family. Teens may open up
more to an adult outside the family than to a parent, so
explore whether a teacher, counselor or another kind of
mentor is available.
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10 activities
children can share with
a person with dementia
1 Bake cookies.
2 Take a walk around the neighborhood.
3 Put a puzzle together.
4 Weed a garden or plant flowers.
5 Color or draw pictures.
6 Make a scrapbook of family photographs.
7 Read a favorite book or story.
8 Eat a picnic lunch outside.
9 Watch your favorite TV show together.
10 Listen to or sing old songs.
Encourage your child to come up with other
ideas. Make sure the activity is a good
match for the abilities of both individuals.
The Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care,
support and research. Our mission is to eliminate
Alzheimer's disease through the advancement of
research; to provide and enhance care and support for
all affected; and to reduce the risk of dementia through
the promotion of brain health.
Our vision is a world without Alzheimer's .
For information and support,
contact the Alzheimer's Association:
800.272.3900
alz.org
© 2012 Alzheimer's Association. All rights reserved.
This is an official publication of the Alzheimer's Association but may be
distributed by unaffiliated organizations and individuals. Such distribution
does not constitute an endorsement of these parties or their activities by the
Alzheimer's Association.
041012.03 770-10-0023