Learning that a loved one has Alzheimer’s can be quite overwhelming. If you’re a parent and have to talk to your child about the disease, those feelings are likely exacerbated. This reality, while harsh, is one that affects millions of families. While we often think of Alzheimer’s as an illness that solely affects the patient diagnosed with the disease, the fact is, it affects the whole family.
According to the Alzheimer’s Association, more than 5 million Americans are living with the disease and these numbers are expected to escalate rapidly in the coming years. While symptoms of the disease develop slowly, it’s considered a progressive disease, worsening over time and becoming severe enough to interfere with daily life. And, unfortunately, Alzheimer’s disease is the only disease among the top 10 causes of death that cannot be prevented, cured or even slowed.
Various factors affect the impact the disease has on your child.
The degree to which a child is affected by learning that a loved one has the disease will depend largely on the child’s age, how close emotionally the child is to the person, where the person lives and the stage of the disease. A child who lives with a grandparent and is daily seeing the impact the illness is having on their loved one will likely be more affected than a child who sees that grandparent less often.
It’s OK to feel a wide range of emotions.
Don’t expect your child to react to a loved one’s Alzheimer’s in a certain way. We all cope and express our feelings differently. Know that one day your child may be sad and another day he or she may feel angry. Your child may worry that he or she or another loved one might also get Alzheimer’s. Your child may be curious, confused or even frustrated. Again, these are all very normal emotions. Talking to your child about their feelings will help them deal with them.
Don’t distance your child.
You may be tempted to shield your child from the disease by limiting the amount of time your child spends with his or her loved one, but it’s very important to keep that relationship thriving. While you might have to limit the amount of time they spend together or the type of activities they share, do your best to preserve the bond your child has with his or her loved one. Reading familiar children’s stories, singing familiar songs or using familiar nicknames or phrases may be soothing to both the child and the person coping with Alzheimer’s.
Educate your child about the disease.
When talking to children about the disease, it’s important to be frank and keep things simple. Encourage them to ask questions, sharing the answers you know and looking together for the answers you don’t know. It’s equally important to use language that is age appropriate. A teenager might comprehend what a progressive neurodegenerative disease is, while a school-aged child will better understand that it’s a disease that damages a person’s memory and their ability to perform certain functions.
Prepare your child for the changes.
Children are inquisitive and as the disease progresses, they will ask questions. While many parents will want to wait until those inquiries comes up, it’s best to be forthcoming about the details of the disease. Let your child know that Grandma or Grandpa’s health will worsen. There will be “normal” days and challenging days. Be candid and honest about the changes your loved one may experience and, as the disease progresses, remind your child that Grandma or Grandpa is acting differently because of the Alzheimer’s, not because she or he doesn’t love or care about them.
Don’t dismiss your child’s silence.
Be on the lookout for emotional or behavioral changes in your child. For example, if you notice that your child is withdrawing or has trouble talking about their loved one, open the conversation. A child who is having a hard time communicating might display physical symptoms, like a stomachache or headache. Validate your child’s feelings. Let him or her know it’s OK to be scared, nervous or afraid and that you’re always there to talk. Let them know that you, too, feel some of these emotions.
Reach out to others for support.
Make your child’s teacher aware of the situation, as he or she can help your child cope. Let him or her know the ways in which Alzheimer’s disease is affecting your child and the family and ask them to notify you about any changes in behavior. If needed, school psychologists should be contacted and scheduled for on-site emotional support.
Take care of yourself, too.
If you’re the caregiver, take good care of yourself! Sleep well, eat well and mind your own emotional well-being. Discover your self-care time in exercise, art, music, faith rituals or hobbies. Be patient and recognize that you’re dealing with a stressful situation. Remind yourself that your loved one is still present and that he or she is much more that a person with a disease.
Julie Keenan, MSW, is a Hospice Social Worker, and Lynn Gabriel, MDiv, BCC, is Director of Bereavement Services at Kaiser Permanente Downey Medical Center Hospice Department.