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The Ribbon - Care for Caregivers

Helping Children Cope With Dementia

Although the vast majority of people with dementia are elderly, in many cases there are young children and adolescents in the household or close by who are strongly affected by the illness of someone they love. It could be their grandparent who is affected by the disease or, in early-onset cases, their own parent. At a time when they are trying to cope with their own growing up, they find they also have to cope with a family member who is ill.

Communicating Feelings

The most important thing you can do to help your children or grandchildren cope with dementia is to be willing to listen and communicate. They need the opportunity to ask questions and express their feelings without fear of repercussion or rejection. A non-judgmental atmosphere will help them to become more comfortable with discussions of the painful changes taking place in their lives.

Remember, young children may not be able to take in too much information at one time - keep it simple and try to respond to their questions at their own level.

Adolescents are often good at expressing themselves and their feelings, but don't be surprised if they do not initiate discussion. Watch for clues in their behaviour that something is on their mind and then try to talk openly. Some young people may have problems talking with parents because they don't want to worry them or are afraid of making them sad or being a burden. They may prefer to talk to their peers or to counsellors.

Young people will react differently depending upon their age and stage of development and on how important the person with dementia is in their lives and how often they interact with that person.

Questions Children May Ask:

  • What's happening to Grandpa or Grandma (or even to a parent)?
  • Why is it happening?
  • Why can't medicine make them better?
  • Did I do something to make them sick?
  • Will I or my parents get it, too?
  • Will they die?
  • Who will take care of me?
  • What can I do to make them better?
  • Why is everyone always so sad and angry?
  • Why can't things be the way they were?

Emotions Young People May Feel:

  • sadness
  • overwhelming sense of responsibility
  • resentment
  • unwillingness to take responsibility
  • helplessness
  • despair and hopelessness
  • jealousy/ tension / stress
  • denial
  • frustration
  • anger
  • guilt
  • fear
  • embarrassment

Behaviors Children May Exhibit:

  • withdrawal - staying away from the house as much as possible, refusing to visit the person with dementia
  • acting out - radical changes of behaviour such as staying out late or using drugs
  • displaying suicidal tendencies or talking about how he or she might as well be dead
  • pretending everything is great - putting on a happy face
  • having psychosomatic illnesses - such as repeated headaches or stomach aches
  • sleep disturbances - insomnia, nightmares, sleeping during the day
  • eating disorders - overeating or refusing to eat
  • performing poorly at school
  • running away - the home situation may become too much
  • wanting the person with dementia to disappear - talking about how life would be better if they were no longer around

Some General Guidelines:

  1. Let your child or grandchild know that you care and that you understand and know this is tough on them as well.
  2. Give them permission to say what they really feel - don't be afraid of their feelings or your own.
  3. Help them confront and deal with their worst fears - sometimes these fears may be unrealistic but they are certainly very real to the child.
  4. Try to maintain as much family structure as possible - continue to do some of the things you used to do as a family as this will give your children a feeling of security and self-confidence.
  5. Try to spend some time with your child each day - it is important that they continue to have separate time when they are the focus of your attention.
  6. Make family plans and carry them out - persist, even though you may not get overwhelming enthusiasm for your suggestions.
  7. If you are the primary carer of your spouse or parent with dementia, access respite care services to give yourself a break, as well as your children.
  8. Encourage teenagers to get on with their own lives and make their own plans.
  9. Deal with conflicts and problems - don't brush them under the rug.
  10. Set aside special times when the family can discuss responsibilities and problems, but try not to make "helping" the overriding concern.
  11. Notify your child's teacher or school counsellor that there is a serious illness affecting a family member - check with the school from time to time to see if the child has experienced problems you may not have heard about.

Take care of yourself so that your child does not think that you might get sick, too.

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