By Marcela De Vivo, Freelance Writer
Dementia affects every member of the family, whether you choose to care for your aging parent at home, or have them in hospice care. Stressful and confusing for the patient, and the caregiver, the children in the family are also very much affected by an elderly relative’s dementia. The lack of stability in the home environment, increased tension, volatile moods, and decreased awareness and attention coming from both the parents and from the relative with impaired cognitive abilities can be very upsetting to a child. In order to help your child understand the situation, you’ll have to spend time teaching him or her about the disease and how it is affecting the family and the loved one with dementia. A better understanding of the situation can go a long way in making interactions and transitions smoother and less stressful for all parties involved (especially if you plan on moving your elderly relative into your home). When discussing dementia with your children, make sure you talk about the following points:
- Dementia is a disease that affects the brain, and causes the person with the disease to think and behave differently that before. However, this person still loves you.
- While dementia is an illness, it is not contagious. Nor is it the result of anyone’s actions.
- Talking to the relative with dementia can be confusing, because the disease is creating gaps in the connections in the brain. So sometimes sentences and words get lost—much like a derailed train that can’t get to its destination.
- The relative with dementia may forget a lot of things, for the same reason they may have difficulty communicating. They might forget basic things, like names, faces, or how to tie a shoelace. Don’t get upset if they call you by the wrong name—instead tell them who you are, or play along like you’re role-playing.
- The person with dementia will be happy to have visitors and to see people who love him/her.
Be honest when answering questions and be available for questions. While the talking points are a solid guideline, they probably will generate more questions. Be open and available to your children when they ask questions before, during and after a visit. Try to answer as simply and honestly as possible—sugarcoating the situation may lead to more stress and confusion for the child than a direct answer.
Allow them to work through their feelings. Ideally, the honest discussions about dementia should help your children understand the situation from a logical standpoint. However, emotions will still come into play, and your children will react differently to seeing a loved one with dementia. Don’t shame them or scold them for feeling uncomfortable, confused, left out, frustrated and fearful after a visit with the relative with dementia. Let them know that their feelings are normal. Be supportive as they try to find solid footing on which to interact with their changed relative.
Seek outside support. There are organizations and resources dedicated to helping young children to young adults understand and cope with dementia in the family. Encourage them to join groups, read the books or sign up for meetings that allows them to talk to peers about their fears, questions, and concerns.
Celebrate the good times. Encourage your children to remember their “happy” times with their loved one and to develop new ones. Celebrate it by taking pictures of particularly happy moments between your elderly relative and child, or going over existing photos and scrapbooks with your children to help them remember how much your relative with dementia loved them. Find ways for the children to spend time with the relative that is fun and playful for all parties involved. Don’t be afraid or hesitant to talk to your children about the realities of dementia. The more they understand, the better they will be able to handle uncomfortable or awkward situations. Constant interaction will also help them build empathy and compassion, while reminding them of care and love this relative once brought—and still brings—into their life.
Marcela De Vivo is a freelance writer from Los Angeles whose writing covers a variety of subjects from health to technology. As a mother of three young children, one of whom has cerebral palsy, she knows how important it is to be open and honest with any question they may have about health. She encourages parents to speak with their own children about common ailments such as dementia.