Help for coping with loved one's dementia

When a loved one is diagnosed with Alzheimer's, worlds come crashing down. Not only for the person with the disease, but for family members who face a long, difficult task as caregivers.

Typically, much of the caregiving falls to the adult children, who are unprepared for the responsibility. "For our parents, we never really plan on taking care of them in this type of capacity," says Nataly Rubinstein, a certified geriatric care manager and social worker specializing in dementias. Rubinstein knows about caregiving from the personal side as well. She was the primary caregiver for her mother, who was diagnosed with dementia in 1994 and died in 2009.

Rubinstein is the author of "Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide" (Two Harbors Press, $17.95). In her book and on her website (alzheimerscareconsultants.com), Rubinstein gives hope to family members who believe they are in a hopeless situation. Rubinstein details the progression of the disease and offers advice on how caregivers can cope as the disease advances. One mistake frustrated family caregivers often make is raising their voice, thinking yelling will bridge the communication gap. Instead, Rubinstein advises them to keep their voice calm and sentences to a minimum. And do not ask questions -- make statements. For example, don't say, "Do you have to go to the bathroom?" Instead, say, "Let's go to the bathroom."

One error many families make comes soon after the diagnosis. Rubinstein notes that because we are all more aware of Alzheimer's, many patients are diagnosed early in the disease. But families immediately strip the person of all responsibilities, even though he or she is still capable of performing many daily tasks. This is bad for everyone. "Before you know it, the family takes on more responsibility than they need to at that stage," she says. "Don't sign on for things before you need to."

And while this early diagnosis is heartbreaking, it can be beneficial. In a way it's a good thing, Rubinstein says, because the patient is often still competent and can be included in decision-making and make plans with family members before there is a crisis.

"While people still have a voice, they should be able to use that voice," she says. "Instead of waiting for the storm, learn how to dance in the rain."