How do I explain Alzheimer's to a child?
Be simple and direct, but not overly technical. Alzheimer's is a big word that may not mean much to kids of any age, and "disease" can sound like something catching (which it isn't). So simplify: "Grandma has a memory problem." Or, "Grandma has a disease that is sort of like if you had a tape recorder in your head, but the tape recorder is turned off. When she was younger, the tape recorder was on, so she remembers a lot of things from her past, but she can't remember recent things as well."
Put the disease in perspective for a younger child. Ask, "Are you really good at everything? Well, sometimes people aren't very good at memory." Explain that lots of people have problems when they get older -- sometimes you need glasses, sometimes a cane or a walker. Sometimes you can't remember. It doesn't mean you can't do anything anymore. Explain what sorts of things the person can still do (play cards, take walks, give hugs, and so on).
Assure teenagers, who have a longer history of life with that person, that behavioral issues (like aggression) or memory changes (like forgetting the teen's name) are effects of the disease and shouldn't be taken personally.
I have recently had a discussion with my 5 year old. I told her that sometimes when people get older things in our bodies don't work like they used to. I told her that when her mom-mom "acts funny" its because her memory is not good. I explained that her memory works slower now, kind of like her toys when the batteries are running out. I'm not sure if it helped, however she seemed satisfied with that answer, although she did ask why we couldn't ask a doctor to make her memory good again, lol.
In our practice we routinely deal with young children who have parents with AD.
If the child is in grade school you may be surprised at how much they understand about the brain because of school-based drug education.
When counselling children I like to see what the child understands about how the patient is acting, gently adding thast this is an illness (young children worry that this will happenb to their parents and other grand relatives if they think it will happen to all older adults).
Then I add a bit about how does the disease make the patient act and how do they feel about it. I am careful not to defend the patient as this time needs to be spent with the child expressing how he/she feels. I ask about feelings of anger, fears, and if they are frightened of the patient.
I encourage families to meet with the school guidance counsellors if the child in living with the patient. I tell parents to reassure the children that it is okay to notice something seems wrong and if they are afraid, that the child will not be left alone for activitirs with the patient.
I counsel the family on good communication and unconditional positive regard/respect for the patient to model how the child can communicate.
Finally I revisit the issue as children in different developmental stages have very different concerns about what the disease means to them.
Geri Hall, PhD, ARNP, GCNS, FAAN Advanced Practice Nurse Banner Alzheimer's Institute
