"Mommy, what's wrong with Grandma?" asked my then 6-year old daughter, Carly. Her beloved grandma would repeat the same question multiple times or would often act confused. About three years earlier, my mother had been diagnosed with Alzheimer's disease (AD), a progressive, neurodegenerative disease that causes problems with thinking, memory, and behavior. There are more than 5 million Americans living with AD. Of these, approximately 200,000 people under 65 are estimated to have "younger-onset" Alzheimer's, meaning it strikes people in their 50s and 60s (and in very rare cases, 30s and 40s). The biggest risk factor is getting older. After age 65, the risk of Alzheimer's doubles every five years. After age 85, the risk reaches nearly 50 percent. Right now there's no way to way to prevent it, cure it, or even slow it down. However, recent medical advancements have led to better ways of diagnosing the disease, which is helping to shape the direction of research and clinical trials.
Each of my daughters was dealing with their grandmother's changing behavior in different ways. Emma, who was 8 at the time, had noticed some of the subtle changes, but had easily accepted my simple explanation that Grandma was getting forgetful; she never pressed for details. For Morgan, then 4, AD hadn't changed anything. Since our routine visits with my mom still included cookies, milk, and playing with toys, in Morgan's world, everything was the same.
But Carly's inquisitive mind needed to make sense of what she saw. In time, her questions made me realize that I could no longer continue to pretend that everything was fine with my mother. It was time to open up and tell her the truth. The tough part was figuring out how to do this. What I learned may help your family, too.
Be straightforward. The best approach for talking to kids about Alzheimer's disease is to keep it simple, suggests Claire Day, vice president constituent services, at the Alzheimer's Association's Delaware Valley chapter in Pennsylvania. "Educate them in the basic, simple terms on what AD is, how it progresses and what they should expect to see as changes occur in their grandparent," she says.
Use terms they can understand and be specific about behaviors. Remind your daughter that Grandpa is acting different because he has AD -- not because he doesn't care about her. As my mom forgot names, I reassured my children that Grandma may not know their names, but she knows the love that's between her and them. If your child is older, you can explain that the changes deep inside the brains are destroying the centers that control remembering, thinking and feeling. "It can be as simple as saying, 'Grandma is losing her ability to make sense out of the world,'" says Day.
Take advantage of free online resources. Maria Shriver helped create a moving 30-minute film called "Grandpa, Do You Know Who I Am?" for HBO, which can be helpful to watch as a family. Videos in the "Kids and Teens" section of the Alzheimer's Assocation's site (alz.org) talk specifically to kids about understanding AD and share stories from other children. These videos can help reinforce the message to your children that they're not the only family dealing with this. In addition, alz.org includes fact sheets and book suggestions that explain Alzheimer's in a kid-friendly manner.