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Help for Caregivers

More than 5 million Americans have Alzheimer's, but the number of lives affected is much greater. Most people with Alzheimer's are cared for at home by family and friends.

Many of them say they find caregiving rewarding, but many also say it can be difficult. People with Alzheimer's can have trouble with the basic tasks of life, such as eating, bathing and getting dressed. But the emotional impact of the disease is often what's most devastating for caregivers. People with Alzheimer's can be combative and have severe mood swings. Sometimes, they simply forget where they are and who they are.

In her book Learning to Speak Alzheimer's, Joanne Koenig Coste talks about productive and simple ways to ease mood swings and anger in people with Alzheimer's, which in turn can ease the caregiver's stress.

"Aggressive behavior and angry behavior is a result of frustration," on the part of the person with Alzheimer's, Coste says. Their inability to communicate, as they search for words or are repeatedly told they're wrong, or their resentment over the limits placed on them by the disease, can trigger outbursts and mood swings.

It's a defense against a world they no longer understand, says Coste. That aggression can be lessened if caregivers try to see the world from the perspective of the person with Alzheimer's, Coste advises. So if a loved one who's confused thinks it's 1941 and Franklin Delano Roosevelt is still alive, it's OK to pretend FDR is still holding his fireside chats.

In the past 15 years, there has been an explosion in support groups, guides and adult day-care centers, all of which work together to bring some respite as families adjust to the tough issues surrounding Alzheimer's. Find out more:

— The National Institute on Aging's Alzheimer's Caregiving Guide covers a wide range of topics, such as bathing, communication, home safety and choosing a nursing home.

— The Alzheimer's Association keeps up to date on the latest research and has extensive caregiver fact sheets, from sexuality and nutrition to recommended activities. The association also runs an excellent 24-hour hotline that provides practical advice and emotional support for caregivers.

Minnesota's Geriatric Research and Education Clinical Center advice for caregivers talks about how to use body language to improve communication.

— The National Family Caregivers Association has 10 tips for how caregivers can take care of themselves.

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Vikki Valentine
Vikki Valentine is a senior supervising editor on NPR's science desk. She oversees the network's health coverage across broadcast and digital platforms. Previously, Valentine was the network's climate change, energy, and environment editor and in this role was a recipient of a 2012 DuPont Award for coverage of natural gas drilling in Pennsylvania.