How does having a family member with dementia affect children? The answer: It depends on the age of the child, the severity of the memory loss and the child’s relationship to the person with dementia. The better you understand how the disease affects your loved one, and how you handle your own process of loss and adapting to change, the better you can help your child.
Depending on their age, children understand only what they are developmentally capable of understanding. But they will also benefit by knowing the truth—as described in their terms. Accepting and acknowledging the truth requires that we allow ourselves to experience feelings of loss. When caring for a person with dementia, the feeling of loss is quite complicated and is often called “ambiguous loss”—it is unclear and indeterminate. The ambiguity comes from needing to recognize that the person might be here physically, but absent psychologically and cognitively. Often our greatest paradox as caregivers is the paradox of letting go of the person who used to be, and holding on to the qualities of the person who is present now. How you meet this challenge will significantly influence your child’s ability to find a pleasurable connection–throughout the disease process–with the person they love.
Children and teens often receive less attention, have their routines disrupted and may have to help with caregiving responsibilities. Children’s grief comes out differently than adults’ grief, depending on their developmental stage. When children don’t have information, they make up explanations for the things happening around them. They might experience sadness, confusion, fear, worry, anger, frustration, guilt, jealousy, resentment and embarrassment. They may feel unloved, that they are not normal and/or their family is not normal, concern that the illness or disability is “contagious,” and even that they caused this disease to happen.
Children may have difficulty understanding and accepting the disease, particularly a disease as confusing as dementia. They might withdraw from or lose patience with the person with dementia or spend more time away from home or not invite friends to the house if the person with dementia lives with you. Often they express vague physical complaints like a stomach ache or headache, show regressive (younger) behavior and you might see a decline in their school work. Sometimes children quietly worry that the disease will “happen” to them or mommy or daddy, and if so, who will take care of them.
Parents need to maintain open lines of communication with children, explaining the disease more than once and answering questions truthfully. Children need comfort and support and the opportunity to express their feelings. Normalizing their feelings by naming them and accepting them keeps the channels of communication open. It also helps children if the adults in their lives express their own feelings, to show them that feelings are ok and there are appropriate ways to express those feelings.
Preschool children and young children will express themselves best through play and art activities. They often sense something is wrong but have no way of asking what it is, so it’s best not to pretend all is well. Use simple and concrete explanations such as, “If grandma doesn’t remember things as well as she used to, we may need to help her.” Or “Grandma’s brain is having trouble remembering and the doctors are trying to help her.”
School-aged children often want a lot of detail about the disease and might respond well to pictures of the brain of an Alzheimer’s person. They might be particularly upset by the many mood swings and behavior problems of someone with dementia. They need us to help them identify their feelings, discuss their reactions to the person with dementia without judgment, and help them understand why their beloved grandparent is behaving the way he or she is. Give the child the opportunity to help in problem solving, such as “How can we help grandma not be scared when she goes outside?” It is also important to not give children responsibilities beyond their capabilities (e.g., taking grandma to the bathroom). The school-aged child needs reminders that the person with dementia still loves them even if he or she doesn’t say so or even remember the child’s name.
For teenagers, the many mood changes of the person with dementia may be similar to the ones they themselves are experiencing. Adolescence tends to be a self-centered time and it might be hard for the teenager to be patient with the changes in their loved one and with the accommodations necessary at home to care for someone with dementia. Listen and be understanding and tolerant of their negative feelings. Bring your teenager into the planning process so they feel they have some control. As with all children, information is important. Teenagers can understand a more complex explanation of the disease. Work with your teenager on schedules to accommodate their needs and yours, and give them some control on what chores they might have. Having specific tasks to do for the person with dementia can help the teenager to feel more comfortable, e.g. reading a story, looking at photo albums, folding laundry, etc. “Fitting in” is of primary importance to many teenagers and having someone with dementia in the home may be a source of profound embarrassment. These feelings need to be acknowledged and accommodations made to allow the teenager to socialize with as much dignity for him or herself and the person with dementia as possible. They may need to help finding words to explain the disease to friends.
It is important in all families and for all children that there be sources of support, whether it be extended family, friends, religious community or counselor. It is very easy to be consumed by the responsibilities of being a caregiver. As a family, make sure you plan fun activities to do together (sometimes, at least, without the person with dementia) and have alone time with your child as often as possible. Doing research on the web or reading books together on dementia is another way to help everyone in the family gain knowledge and share their feelings and experiences. Click here to see a list of recommended books. Other recommended books can be found by searching the web.
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