Discussing Dementia With Your Kids

What Do Kids Want to Know?

Teens yearn for interactions that diminish frustration, embarrassment, and anger, and want specific guidance from doctors, therapists, or relatives about how to engage their loved one. Pressuring kids “to spend time” with the family member suffering from dementia may add stress to each encounter. Instead, parents and friends should encourage adolescents to find mutually satisfactory activities without forcing exchanges. Suggestions include movies (no talking, for the most part, which eases the burden of communication), chess games, walks, or family photo album/ home movie viewing to revive good memories.

They want to understand the illness, but not in excessive detail, so energy spent obsessing about specific and often elusive diagnoses is better directed elsewhere. The more children want to learn, the more they will ask. Often, this evolves with their age, with older teenagers expressing a desire for more knowledge. Mostly, they want to feel secure that you will be able to manage, that you have help, and that despite this tragedy in your family, you will find happiness.

How and When to Tell Them?

Essentially, kids want to feel informed sooner rather than later, so don’t wait. You may think you’re protect them, but it doesn’t work, because they will know something is wrong. Share the news in a conversation that allows them to express emotions and ask questions. The depth of details depends on the age of the child (kids 11 and older want more), but they have a very good sense of how much they can handle. Let them guide you.

Adolescents quickly grasp the actual or possible symptoms; by the time the diagnosis rolls around, they’ve probably experienced a lot of odd behavior. They usually feel enormously sad — yet relieved — to learn that an illness has caused the changes in their loved one. But some are surprised and relieved to hear how much those behaviors can vary from one patient to another. Adults need to remind kids that no two patients are exactly alike, and no single patient exhibits all symptoms. Unpredictability is the only constant. When children know this, they can attribute all unpleasant interactions with their beloved family member to the illness, which can ease their anguish.

Checking in With Your Kids

This may seem obvious, but finding time to sit down and check in with your children is difficult — even when you don’t have an ill family member to worry about. Adolescents tell us that they are extremely reluctant to approach parents under stress, for fear of adding to the problems. Therefore, the responsibility lies with you to establish regular check-in sessions. This may include setting a specific day of the week when everyone sits down to dinner, or it may fall in those few minutes before you go to bed (because if you have teenagers, they often outlast you at night). Driving to and from school or practice is not ideal, but if it’s all you can get, use it wisely. Have a hard time initiating conversation with your teen? Ask him to load some music onto your iPod (or burn a CD), then play it in the car. It’s a fantastic way to bridge the gap.

Helpful Messages to Reinforce

  • Everyone feels similar emotions; they are normal and completely acceptable.
  • Children need to hear repeatedly that there’s no wrong way to react to such a heartbreaking loss. But that’s not entirely correct, because young adults have a way of disappearing in damaging coping mechanisms, such as drinking, drugs, and unhealthy relationships. The key here is to continue checking in over the long haul. Many families do well initially with counseling and open discussions. Six months later, everybody’s busy, going in different directions, and nobody wants to talk about it anymore. But the fear and sadness persist, and nobody knows there’s a problem.
  • It might be helpful to admit that while you must remain strong for the family, these sentiments affect you, too. Typically, they include:
    • Sadness
    • Guilt
    • Anger
    • Shame
    • Resentment
    • Confusion
    • Fear
    • Frustration, frustration, frustration
  • Make sure you know of a psychologist/family therapist who is ready to help, if necessary.
  • Most often, teens just need you to hear them and hug them.

Empowering Kids to Help You — and the Patient!

Again, modeling life balance and an openness is most important. When friends say, “If there’s anything I can do to help, just let me know,” follow through. Let your kids hear you say, “My husband would love to listen to stories about the time you spent together. Would you be willing to pick up sandwiches and have lunch at home with him?” or “Next time you run to Costco, could you pick these items for us, and I’ll pay you back?”

Also tell your kids how you need their help. If it’s not related to caregiving, it may revolve around household chores that relieve you and make them feel like an essential part of the family — emotionally and logistically (believing you should spare them this work is the wrong approach.) “Why doesn’t anybody help around here?” does not sound the same as, “Can we talk about who will be in charge of emptying trash? Cleaning dishes? And walking the dog? Can we brainstorm a system that will work for all of us?” Taking on every detail because you feel terrible that your children are suffering sends you marching down the martyrdom trail. And nobody wants to follow you there. Or even be around you.

How Much Caregiving Should Kids Do?

Caring for a loved one can be meaningful and positive— to a point. Adolescents reveal that providing care does not connect them to the ill family member (besides the good feelings that arise from helping their parents), and can become enormously stressful if required to provide hands-on care too often. They must have time to live their own lives.

Physical demands, such as feeding and suctioning for a loved one who can’t eat or swallow, are difficult but sometimes less taxing than encounters that devolve into emotionally draining and negative memories. Caregiving at all levels can make children feel awkward, uncomfortable, and defeated. Frequently, kids rely on you, the healthy parent, to act as a buffer. Despite the stress endured by all family members, however, helping to care for the person with dementia draws children much closer to you. While not much changes with the patient, all agree that their relationship with the healthy parent evolves significantly.

Written by Tiffany Chow, M.D. and Katherine Nichols, based on qualitative research.