National Newsletter - Volume 16, No. 2 - Summer '96
Eight year-old Brian Stansfield gets up early each morning to read the newspaper to his grandfather before leaving for school. Jessica Powers, 15, hurries home from her extra-curricular activities to cook dinner for her family. "When someone in your family has Alzheimer's, everyone has to pitch in and help," says Jessica.
A growing number of children and teenagers have grandparents -- or even parents -- who have been diagnosed with Alzheimer's disease. Often the affected person lives at home and children help provide care. Caregiving can be a 24-hour-a-day activity for some family members. And sometimes, care requires an adult's full attention, making it difficult for parents to consider how the disease affects their children. "Even most support services and resource materials are created for adult caregivers and seem to overlook children," says Paul Raia, director of patient care and family support for the Eastern Massachusetts Chapter of the Alzheimer's Association. "But young people experience different feelings and have unique needs."
Never too young to care
Even the youngest family member is affected by a loved one's Alzheimer's disease. Raia believes small children, in particular, benefit from information about the disease. Without it, erratic behavior that typically accompanies Alzheimer's can be misunderstood and even frightening.
Brian used to think he was to blame for his grandfather's periodic outbursts. "Since Thomas, Brian's grandfather, never directed his anger specifically at him, we never realized he felt responsible," says Denise Stansfield, Brian's mother. "Now we set aside time to talk with the kids about what's happening and how they're feeling."
"Open communication and education help make Alzheimer's less mysterious to kids," says Beth Boivin, president of the Alzheimer's Association's Northeastern New York Chapter and facilitator of a children's support group. "Parents should offer simple, honest explanations whenever possible." Boivin uses large, colorful puzzle pieces to explain how the brain works. The children in her group learn how Alzheimer's disease makes certain parts of the brain "sick", causing the person to act differently. "I always make sure to leave the piece that represents feelings intact, so kids remember their family member is sensitive and still needs love" adds Boivin.
Jim McCrea, Ph.D., researcher and author of Talking with Children & Teens About Alzheimer's Disease (see Resources, pg. 6) believes one of the most common mistakes families make is sheltering their youngest members from the person who's affected. "Studies show that children have a calming affect on people with Alzheimer's," says Dr. McCrea. "Young people can be extremely caring and resourceful, once they understand what's happening."
Sometimes, Brian is the only person in his family who is able to communicate with his grandfather. According to Denise, there are days when Thomas will only leave the house if Brian is there to encourage him. "When I'm able to help grandpa, it makes me feel good," says Brian.
Life as a teenage caregiver
Teenagers have different, yet equally important needs. "Being a teenager isn't easy, but being a teenager whose mother has Alzheimer's disease is especially challenging," explains Jessica, whose 46 year-old mother is in the early stages of the disease.
"It's the little things that are the hardest," says Jessica. "Like wondering if she'll remember to pick me up from school or recognize my friends." Raia believes it is emotional support that teenagers affected by Alzheimer's need most. "Sometimes, they seem completely unaffected by what's going on, and that's OK," explains Raia. "What's most important is that they have someone to turn to when they need to talk." Jessica agrees. "I talk to a few close friends, but mostly, I still talk to my mom."
In some families, teenagers often are expected to assume the unofficial role of "assistant caregiver." Boivin doesn't discourage parents from involving teens or even younger children in daily care or household chores. But she does caution them about overwhelming young people. Boivin suggests finding a few reasonable activities that the young person is capable of doing, and asking them for some assistance. "It's appropriate to ask for their help," says Boivin, "but be careful not to overload them with too much responsibility. You've got to allow them to be kids, too."
Help is available
Children, like adults, usually feel better when they realize they're not alone, and that there are other young people they can talk to who are going through similar experiences. Many chapters of the Alzheimer's Association have additional information available specifically for young people, and sponsor support groups especially for children. To locate the chapter nearest you call (800) 272-3900.
Tips for parents