Alzheimer disease from a child's perspective

Reactions commonly expressed by children 

Children affected by AD may exhibit their emotions in ways not easily recognized.5 The degree to which children are affected also depends on how close they are to the AD patient and where that person lives.5 If someone in the family has AD, children usually receive less attention, and their regular routine is disrupted, particularly if the AD patient lives in the same household.5 Children also may have to take on additional jobs and responsibilities around the house.6 Jealousy and resentment are common among children because of the increased time and attention given to the person with AD.5, 7

Children may feel sad and confused about the personality and behavior changes in their loved one and may be afraid of those behaviors.5, 7 They may feel angry or frustrated by the need to repeat the same questions or responses over and over or feel disregarded when their loved one does not recognize them.8 Young people can be confused about how their loved one got the disease and why they behave differently; they also may worry that their parents or even they may get it.5 Although the reaction is more common in the older child or adolescent, younger children may not want to have their friends visit because they are embarrassed by the behavior of the person with AD.5, 7

Young people may exhibit their reactions in very subtle ways. Signs such as changes in behavior are important to look for and may help in understanding their feelings. Some maladaptive reactions include withdrawing from or losing patience with the AD patient, spending more time away from home, and ceasing to invite friends to visit at home.5, 7 Additionally, children may complain of vague physical symptoms, such as stomachache or headache, and they may exhibit decreased performance at school.5

Discussing ad with children 

Children are naturally curious people, are excellent observers, and are well aware when something is wrong or different.7, 9 Although there is no easy way to explain AD, adults need to briefly explain what is happening to the person with AD. It is important to be honest with children. They can be told that grandmother or grandfather forgets things because his or her brain is not working properly; they do not require medical jargon or information about treatments or specific procedures.4 Children may need reassurance that AD is not contagious like other childhood diseases.7 Mace and Rabins7 also stress that children must be told that nothing they did caused the illness because children may secretly blame themselves for the things that happen in their family.

Goyetche4 suggests giving children specific examples about what their loved one might forget. Children could be told that grandpa or grandma forgot to wash his or her face or put on the same clothes he or she wore yesterday. He or she might forget what day it is or call the child by a different name. Giving regular examples will help the child understand more and be able to relate to a current experience.4

McCrea9 advises using examples of safety and comfort from the child's world to portray the condition of adults with AD. For instance, a child may need help dressing, tying shoes, or using scissors. It can be explained that the grandparent also needs help with these tasks because of a special illness that older people sometimes get. Fearful feelings, such as getting lost at the grocery store or having difficulty crossing the street alone, can be relevant for children and the person with AD. It is important to stress to children that the illness, rather than an external source, prevents their grandparent from feeling safe when alone.9

Be careful not to burden children with responsibilities and emotions beyond their capabilities.9 Tell them that their presence is comforting and find ways for them to feel helpful to their grandparent. Remind children that the adult with AD still loves them. Encourage children to kiss, hug, and hold hands with their grandparent to express their love and caring.9

Sharing activities 

As discussed previously, even the youngest members of the family are affected by AD. The connection between them and their loved one with AD can provide a rewarding and positive experience.5, 10 Children can be more accepting of the behavior from the adult with AD, can inspire fond memories, and can exert a calming influence.10 Shared activities can be mutually beneficial and pleasurable. People with AD respond better to activities that are familiar and not overly challenging. Similarly, children like to participate in activities they find enjoyable and not so overwhelming that they become frustrated.5

When deciding on intergenerational activities, McCrea9 recommends planning activities with a few goals in mind. He suggests choosing activities that use the skills and abilities of the person with AD. In addition, projects should be dignified and gratifying for all those participating. The focus should be on the experience itself rather than results. Flexibility cannot be stressed enough. Activities should be adapted to the responses of both the younger and older generations participating.9

Music can reduce tension, evoke memories, and stimulate movement, such as dancing and marching.11 Rhythm bands can be created with spoons or other household implements. If available, drums, rhythm sticks, or tambourines can be used.9 Simple, familiar dances—such as the Bunny Hop, Hokey Pokey, and square dance—can be a wonderful activity because precision is not imperative to enjoy them. Singing favorite songs, hymns, or simple melodies also can be amusing.9 Musical talent is not a prerequisite for therapeutic effects to occur.

Children and their loved ones with AD can share time in quite a few artistic ways. Crafting, coloring simple pictures, painting on large pieces of paper, and working with clay or modeling clay can provide additional avenues of expression, particularly for people in the early stages of AD.9, 12 These exchanges and sharing of expressions, not the degree of artistry, are the most important aspect of the activity.12

Physical activity, such as walking together or tossing a ball, can be pleasurable for both generations. Participating in some household chores can allow dignity and purposefulness as well. Everyday tasks—such as folding laundry, making beds, dusting, and washing and drying the dishes—can be a cooperative effort between young children and their older loved ones. Supervision may be required to maintain safety.12 These activities also allow children to participate in the caregiving. Although these actions may seem like small, simple things, children can feel proud that they are helping both their parents and their loved one with AD.4

Conclusion 

As life expectancy increases, so does the incidence of AD. Health care providers should be familiar with the common signs and symptoms and recognize the stages of AD. As is the case with many illnesses, the AD patient cannot deal with the consequences of the disease alone. Support and caring from family and friends are imperative, particularly in the early stages. Multiple issues need to be discussed regarding the immediate and long-term future. Health care providers are one of the many resources that patients and their families can turn to for help and information.

Holistic health care seeks to consider the individual in terms of his or her whole being. One important aspect of this concept is working with and educating the family of the person with AD, including young children. Learning the variety of reactions children may express and how to talk with them about AD benefits several generations coping with a devastating illness. With just a little guidance and instruction, positive interactions can occur between the person with AD and family youngsters. Health care providers, particularly nurses, can and should be facilitate this kind of attention and interaction.