GRAND RAPIDS -- When Alissa Anderegg was a little girl, she didn't understand why her grandmother couldn't remember her name and why she didn't talk to her much. Her grandma's angry outbursts confused and frightened her.
"I thought it was my fault," said Anderegg, now 17. "It hurt my feelings."
When her grandmother was diagnosed with Alzheimer's, Anderegg learned the disease was affecting her grandmother's personality, memory and ability to communicate. She began looking for ways to connect with her Grandma Mary Fran and managed to forge a meaningful relationship.
She found, as a teenager, she could play a valuable role in caring for her grandmother.
"The rewards are just so amazing," said Anderegg, speaking Monday at a conference on dementia care at Calvin College's Prince Conference Center. The caregivers' conference was sponsored byClark Retirement Community, in partnership with Optimal Life Designs in Dementia Care and the Alzheimer´s Association.
Anderegg, a high school junior from San Francisco, was featured in an HBO documentary by Maria Shriver, The Alzheimer's Project. She raises awareness about Alzheimer's disease through public speaking and a Facebook group, Alz4Kidz & Alz4Teenz: Resources for kids about Alzheimer's.
She also continues to regularly visit her grandmother, Mary Fran Anderegg, who is in the late stages of Alzheimer's. Through trial and error, she has found a number of ways to bridge the gap created by age and Alzheimer's. Some of her tips include:
Timing: Anderegg usually visits after lunch, because her grandmother is more likely to be awake and alert then.
Music: An accomplished musical actress, she sings old favorites to her grandmother, such as the national anthem and "Somewhere Over the Rainbow." For those not comfortable singing, she suggests bringing an ipod. "Put one ear bud in their ear and one in yours and just kind of hum along," she said.
Enthusiasm: Anderegg speaks to her grandmother with the same respect she would any other adult, but she adds extra enthusiasm and joy to her voice. "I stay positive because she picks up on that," she said.
Bring in old photos: She shows her grandmother photos of her wedding day, for example, and talks to her about the past.
Learn the topics that matter: Knowing her grandmother was an active volunteer and member of a Republican women's group, Anderegg talks about her own community involvement. Once, when she mentioned an event that former first lady Laura Bush attended, Anderegg was pleased to see her grandmother's eyes light up in recognition.
Human touch: She holds her grandmother's hand and keeps eye contact.
Anderegg says it's important to be patient and to realize that what works for one person might not work for others.
"Sometimes it take a good 20 minutes to connect," she said. "When I do have those moments with her, it makes it all worthwhile."
Anderegg's father, Jim Anderegg, said his daughter's visits make a big difference to his mother.
"I think that Alissa is able to bring things out in her that I can't," he said.
The relationship benefits Alissa as well, he added.
"I think she's grown because of it," he said.
Anderegg said having loved ones with Alzheimer's is scary for teens because they are old enough to understand their loved ones' condition will continue to deteriorate. Taking action helps with that fear, she said.
She encouraged teens to become involved in fundraising walks and to volunteer -- perhaps at their grandparents' facility.
"That really gets me inspired -- just trying to do whatever I can to get involved with the cause," she said.
Although only 16, Alissa Anderegg is using her talent to bring awareness to Alzheimer’s disease. In addition to speaking and singing at events to raise awareness for the debilitating disease, the Alzheimer's Association-registered advocate recently appeared in the Emmy-award winning HBO documentary "The Alzheimer's Project: Grandpa Do You Know Who I Am?" with Maria Shriver.
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