The Alzheimer’s
Association, in partnership with local healthcare professionals, will address issues of
caring for a loved one with Alzheimer’s disease or a related dementia. All
names are fictitious and the questions are of a general nature.
School is out and the sounds of summer
surround us. The "thwack" of a baseball bat, ice cubes in a glass of lemonade,
children splashing and laughing in the pool. Summer brings back memories of family
campouts and picnics, the wonderful smell of the back yard barbecue and cold, sweet
watermelons of the season.
Summer has always been the perfect time for grandparents and children to spend days or
weeks together - building a special relationship and enjoying activities; fishing, trips
to the zoo, playing ball or just visiting. We all have sweet, sentimental memories of
summertime, and want the same for our children.
Unfortunately life is not always kind, and we often have to make adjustments in our
dreams to accommodate reality. The reality for 4.5 million American families is
Alzheimer’s disease.
Alzheimer’s disease impacts the whole family, and in the flood of activity and
emotions that follow a diagnosis of Alzheimer’s disease, the impact on the younger
members of the family may be neglected. A child can find grandpa is behaving differently,
forgetting his/her name, or doesn’t want to join in familiar activities, leaving them
puzzled, hurt, or even frightened. Children need our support, guidance and reassurance
when Alzheimer’s disease affects someone they love.
At this time of the year many of us are planning trips to visit family. When the visit
involves an individual who has Alzheimer’s or some other health concern, spending
time talking and preparing children is time well spent for everyone.
In terms of Alzheimer’s disease, the appropriateness of an interaction between a
person with Alzheimer’s and children should be considered on a case by case basis.
For every occasion that a person with dementia is comforted and entertained by the company
of children there will be another person who is agitated and irritated by the activities
and energy of youngsters. The Alzheimer’s Association has materials for all age
groups that will help them understand, and Helpline volunteers can offer advice on how to
talk with your children about Alzheimer’s disease. In addition the Helpline
volunteers can suggest activities the whole family can enjoy, thus ensuring happy,
memory-making vacations and visits!
Paul Harrington, Director of Patient and Family Services addresses a concern often
voiced by families:
My father lives with me; he has had Alzheimer’s disease for three years.
Recently, he’s been unable to remember my children’s names and on occasion has
not recognized them. Increasingly he seems unable to tolerate their playing (OK, noise!)
around him and has shouted at them. The children are bewildered at the changes in their
beloved Grandpa. Can you give me some suggestions on how to talk to them about what is
happening?
I’m glad to hear of your interest in talking with your children about your father
having Alzheimer’s disease (AD). When you consider how bewildering the behavioral
symptoms of AD can appear to us as adults, you can imagine how children perceive these
behaviors. As adults we have the ability to think in abstract terms such that we perceive
symptoms of AD as a disease of the brain. For children, who typically think in concrete
terms, it is difficult for them to understand an illness they cannot see. The fundamental
principle in discussing issues of AD with your children is to use communication techniques
that match their developmental abilities. Ideally, your conversation should not only
provide varying degrees of factual information, but also be an opportunity for your
children to describe how they see the situation and how they feel about it. You may also
gain insight into their feelings by observing their reactions to your father’s
symptoms. The bottom line is that you want to set an emotional tone with your children
that will allow open lines of communication. Helping Children and Teens Understand
Alzheimer’s disease: A Guide for Parents, a brochure available through the
Alzheimer’s Association, provides an outstanding overview of this issue.
Age-appropriate videos and books about AD are excellent resources, especially if you watch
or read together and discuss. From our video lending library, consider Someone I Love
has Alzheimer’s Disease and Just for the Summer. You are also welcome to a
copy of When Someone You Care About has Alzheimer’s Disease which is an
educational activity book for children ages 4-10 our chapter has developed. (This
publication can be mailed to you for a small fee if preferred) Additional books available
through many libraries or bookstores include: Great Uncle Alfred Forgets by Ben
Shecter (for ages 4-8), Grandpa Doesn’t Know It’s Me: A Family Adjusts to
Alzheimer’s Disease by Donna Guthrie (K-3), My Grammy by Marsha Kibbey
(Grades 1-4) and Coping When a Grandparent Has Alzheimer’s Disease by Beth
Wilkinson (Grades 9-12)
