Helping Children Understand Alzheimer’s Disease
When a family member has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. How much and what kind of information you share depends on the child’s age and relationship to the person with Alzheimer’s.
Helping Kids Cope
Here are some tips to help kids understand what is happening:
- Answer their 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.”
- Help them know that their feelings of sadness and anger are normal.
- Comfort them. Tell them no one caused the disease. Young children may think they did something to hurt their grandparent.
Talk with kids about their concerns and feelings. Some may 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 a sign that they are upset. A school counselor or social worker can help your child understand what is happening and learn how to cope.
A teenager might find it hard to accept how the person with Alzheimer’s has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. Don’t force them to spend time with the person who has Alzheimer’s. This could make things worse.
Spending Time Together and Alone
It’s important to show kids that they can still talk with the person with Alzheimer’s disease and help him or her enjoy activities. Many younger children will look to you to see how to act.
Doing fun things together can help both the child and the person with Alzheimer’s. Here are some things they might do:
- Do simple arts and crafts
- Play music or sing
- Look through photo albums
- Read stories out loud
If kids live in the same house as someone with Alzheimer’s disease:
- Don’t expect a young child to help take care of or “babysit” the person.
- Make sure they have time for their own interests and needs, such as playing with friends, going to school activities, or doing homework.
- Make sure you spend time with them, so they don’t feel that all your attention is on the person with Alzheimer’s.
- Be honest about your feelings when you talk with kids, but don’t overwhelm them.
Helping Family and Friends Understand Alzheimer’s Disease
When you learn that someone has Alzheimer’s disease you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. Realize that people often sense when something has changed. By sharing what is happening, family and friends can help support you and the person with Alzheimer’s disease.
There’s no single right way to tell others about Alzheimer’s disease. When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s. You can:
- Tell friends and family about Alzheimer’s disease and how it affects memory, thinking, and behavior.
- Tell them what they can do to help, such as calling the person with Alzheimer’s disease, providing meals, or helping with home repairs or safety modifications.
When a family member has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening.
Tips for Communicating
You can help family and friends understand how to interact with the person with Alzheimer’s disease. Here are some tips:
- Help family and friends realize what the person can still do and how much he or she still can understand.
- Give suggestions about how to start talking with the person. For example, make eye contact and say, “Hello George, I’m John. We used to work together.”
- Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something. Instead, ask family and friends to respond to the feelings expressed or talk about something different.
- Help family and friends plan fun activities with the person, such as family reunions or visiting old friends. Video calls can be a great way to connect, too. Viewing a photo album together can help if the person is bored or confused and needs to be distracted. Family and friends could also create a care package or make a photo album or video to send to the person.
Remind family and friends to:
- Call or video chat at times of day when the person with Alzheimer’s is at his or her best.
- Be calm and quiet. Don’t use a loud voice or talk to the person as if he or she were a child.
- Respect the person’s personal space, and don’t get too close.
- Encourage a two-way conversation for as long as possible. Be patient when someone has trouble finding the right words or putting feelings into words. You can help them but try not to speak for them.
- Try not take it personally if the person does not remember you, is unkind, or gets angry. He or she is acting out of confusion.
When You’re Out in Public
Some caregivers carry a card that explains why the person with Alzheimer’s might say or do odd things. For example, the card could read, “My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for your understanding.”
The card allows you to let others know about the person’s Alzheimer’s disease without the person hearing you. It also means you don’t have to keep explaining things.
Holiday Hints for Alzheimer’s Caregivers
Holidays can be meaningful, enriching times for both the person with Alzheimer’s disease and his or her family. Maintaining or adapting family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with Alzheimer’s, this link with a familiar past is reassuring.
However, celebrations, special events, or holidays, which may include other people, can cause confusion and anxiety for a person with Alzheimer’s. He or she may find some situations easier and more pleasurable than others. The tips below can help you balance busy holiday activities with everyday care for a person with Alzheimer’s disease.
Finding the Right Balance
Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy.
Here are some ways to balance doing many holiday-related activities while taking care of your own needs and those of the person with Alzheimer’s disease:
- Celebrate holidays that are important to you. Include the person with Alzheimer’s as much as possible.
- Set your own limits, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.
- Involve the person with Alzheimer’s in simple holiday preparations, or have him or her observe your preparations. Observing you will familiarize him or her with the upcoming festivities. Participating with you may give the person the pleasure of helping and the fun of anticipating and reminiscing.
- Consider simplifying your holidays around the home. For example, rather than cooking an elaborate dinner, consider a smaller dinner with close family. Instead of elaborate decorations, consider choosing a few select items.
- When health and safety provisions allow, encourage friends and family to visit even if it’s difficult. Limit the number of visitors at any one time. Plan visits when the person usually is at his or her best. Virtual visits through video or phone calls are also a great way to connect over the holiday season.
- Prepare quiet distractions to use, such as looking at pictures or going for a walk, if the person with Alzheimer’s becomes upset or overstimulated.
- Make sure there is a quiet space where the person can rest and have time to recharge.
- Try to avoid situations that may confuse or frustrate the person with Alzheimer’s, such as changes in routine and strange places.
- Try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol).
- Find time for holiday activities you like to do. For example, go for a walk in the neighborhood and look at holiday decorations, or bake holiday cookies.
- If you receive invitations to events that the person with Alzheimer’s cannot attend, consider going yourself. Ask a friend or family member to spend time with the person while you’re out.
Explain to guests that the person with Alzheimer’s disease does not always remember what is expected and acceptable. Give examples of unusual behaviors that may take place such as incontenance eating food with fingers, wnadering or hallucinations.
If this is the first visit since the person with Alzheimer’s became severely impaired, inform people ahead of time what they can expect. The memory-impaired person may not remember guests’ names or relationships but can still enjoy their company.
- Explain that memory loss is the result of the disease and is not intentional.
- Stress that the meaningfulness of the moment together matters more than what the person remembers.
Preparing the Person with Alzheimer’s
Here are some tips to help the person with Alzheimer’s disease get ready for visitors:
- Begin showing a photo of the guest to the person a week before arrival. Each day, explain who the visitor is while showing the photo.
- Arrange a phone call for the person with Alzheimer’s and the visitor. The call gives the visitor an idea of what to expect and gives the person with Alzheimer’s an opportunity to become familiar with the visitor.
- Keep the memory-impaired person’s routine as close to normal as possible.
- During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest.