What should you consider when talking to younger
family members about Alzheimer’s disease or other dementias?

As if it weren’t demanding enough to focus on the ever changing needs of the person with dementia, one ought not to lose sight of the impact of this illness on the younger members of the family and extended family. If one can imagine what it might be like to be a student in elementary, junior high or high school, and to have to make sense of the subtle and not so subtle changes that are part of a dementing illness, one can begin to see the need for helping a younger family member cope with these changes.

The children and teens in need of this attention are very often the grandchildren of the persons with dementia. However, with the growing numbers of people diagnosed before the age of sixty (early onset), more of these young people are the children and teenagers of the persons with dementia. These children and teens along with the grandchildren who have had a particularly close tie with their grandparent with dementia are the main focus here.

Probably the most important thing to consider in your dialogue with younger family members is how the devastation of the losses that accompany Alzheimer’s disease and other dementias is affecting them. Resist the temptation to ignore the signs of their distress. These signs can range from the child or teen withdrawing from or losing patience with the person with dementia to their spending more time away from home and refraining from inviting friends to the house. In addition, their overall school performance level may suffer as indicated by an increase in behavioral difficulties and/or a drop in academic performance.

It is probably best to assume that younger family members are experiencing some distress even if there are no obvious signs. The feelings of anger and guilt for getting angry at the person with dementia, sadness about how the person with the illness is losing capacity, frustration with needing to repeat words and phrases in response to the repetition of questions, and the overall increase in worry and anxiety that occurs when a family member has dementia are just some of the feelings that are evoked. Being able to express these feelings verbally or in writing is extremely important especially when you consider that young children often need help and permission to identify these feelings and help in coping with them effectively. Talking with or encouraging younger family members to keep a journal also provides an opportunity to give them accurate information about the illness and to answer their questions.

Younger people in the family may be more keenly aware of the changes than the adult family members know. Eight year old Ashanti Ellis wrote about her grandmother with Alzheimer’s disease in a homework assignment from school. She wrote,“When I first found out that my grandmother had Alzheimer’s I was surprised I didn’t cry but as the days went by I eventually cried a lot. I haven’t stopped crying yet because this is a disease you can’t get over… Every night I pray that she’ll get better. I go downstairs to her room and I look at her and she looks at me and I try to hold in my tears. It’s hard to have a loved one in your family to have Alzheimer’s disease. People whose family don’t have Alzheimer’s disease is what I call a perfect family. So if you ever tell me I have a perfect family, I will have to say, no, I don’t.” Clearly Ashanti Ellis has pinpointed the most difficult aspects of her grandmother’s Alzheimer’s disease, i.e. it’s a disease you can’t get over, and it is a heartbreak for the entire family to slowly lose aspects of a person who is so central to all members of the family.

For some children, books can be a useful tool in opening up the dialogue. Maria Shriver’s What’s Happening to Grandpa? has been helpful to some families. We also have a brochure called Parents’ Guide, Helping Children and Teens Understand Alzheimer’s Disease which can be received by calling our 24-hour Helpline. Finally, we are available to meet with families to assist with planning for the person with dementia, but also to discuss the impact of the illness on the younger members of the family. Please don’t hesitate to call our Helpline and request an individual or family meeting with one of our care consultants.

— Reva Hoffman, LCSW
Director, Clinical Services

Previous | Next