When one person receives a diagnosis of Alzheimer’s disease (AD) or a related dementia, the news reverberates throughout the entire family. All family members are affected in its wake, and each person will process the news differently. Children and teens, for instance, might experience acute grief and emotional losses that are different than an adult’s experience. Furthermore, it is estimated that as many as 250,000 children aged 8 to 18 are family caregivers for those with AD in the US (Rosenthal & Greer, 2011) . With millions of families being affected by the disease — and so many children on the front line of caregiving — it is crucial that we understand and overcome the unique challenges faced by this young group.
Keep Open Lines of Communication
Although children/teens may not be privy to everything that is happening in the household, that doesn’t mean they are spared any stress or anxiety. The young person might be aware of the tense atmosphere in the family, but not understand why. This could cause them to blame themselves, feel guilty, or retreat from family involvement. Therefore, it could be more damaging to ‘sweep the issue under the rug’ rather than to address it head-on. Even if the truth is unpleasant, it is better to be open and honest about changes as they occur.
When a family member is diagnosed, it could be helpful to schedule a family meeting or one-on-one conversation with the youngsters. This will help to facilitate on-going discussion about the disease, and it will allow family members to freely surface concerns or questions.
Answer Questions Honestly
Respond simply to questions in an age-appropriate, honest way. Children are astute observers and are often aware if someone is being inauthentic. Remember to address and validate the young person’s emotions. Listen attentively to the child/adolescent and offer reassurance.
Teach Your Child about the Disease
Education about the disease can often aid in dispelling fears and anxiety. Use concrete examples or even humor to help educate your child or adolescent. For example, you could say ‘Even if Grandpa sometimes forgets your name, he really enjoys spending time with you’ or ‘If grandma says something mean or upsetting, remember is the Alzheimer’s disease making her act this way”. Picture books have also been shown to be effective in teaching children about dementia and older adults (Holland, 2005). Encourage your child to ask questions. Be patient and use words that are easy to understand. Reassure your child that just because a person in the family has Alzheimer’s, it does not necessarily mean that he or she or other family members will get the disease too.
Create Opportunities for your Child to Express Feelings
Agitation, withdrawal, poor performance at school, lost of interest in activities, etc. are all possible indications that the young person is suffering emotionally. It is important to create an environment that is conducive to open expression of feelings. Teens may need some additional prodding in order to open up. Younger individuals may express themselves better through painting, poetry, or a journal.
Encourage your Child/Teen to get Involved in Caregiving
Allowing the young person to be involved in caregiving, can help him/her to feel included and in control of the situation. Teach your child about appropriate communication techniques, such as speaking slowly and using body language. Below are some ideas on activities children can share with a person with dementia:
- Bake cookies
- Take a walk around the neighborhood
- Put a puzzle together
- Weed a garden or plant flowers
- Color or draw pictures
- Make a scrapbook of family photographs
- Read a favorite book or story
- Eat a picnic lunch outside
- Watch your favorite TV show together
- Listen to or sing old songs
However, be careful to not overwhelm the teen/child with responsibility, and he/she should probably not be left alone with the person with dementia. Acknowledge and appreciate the young person’s efforts in caregiving.
Early-onset Alzheimer’s disease (EOAD)
Early-onset Alzheimer’s disease affects individuals in their 50’s, 40’s or even younger. When someone is diagnosed with EOAD, their children may still be school age and living at home. In these cases, the children in affected families often take on more caregiving responsibilities and experience greater emotional upheaval, as their parent loses mental faculties during critical developmental periods. It is important to exhibit even greater patience and understanding with these unique cases.
References
http://www.afateens.org/
http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp
Holland, M. (2005). Using picture books to help children cope with a family member’s alzheimer’s disease. YC Young Children, 60(3), 105-109. Retrieved from http://search.proquest.com/docview/197697278?accountid=27927
Rosenthal Gelman, C., & Greer, C. (2011). Young children in early-onset alzheimer’s disease families: research gaps and emerging service needs. American Journal Of Alzheimer’s Disease & Other Dementias, 26(1), 29-35. doi:10.1177/1533317510391241
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