For Alzheimer's caregivers, patience and compassion are key

Expert advice for those facing the challenges brought on by the disease.

24 feb 2013—The picture isn't necessarily pretty when it comes to Alzheimer's disease.

More than 5 million Americans currently have the degenerative brain condition, there's no sure way to prevent it and current treatment options don't work for everyone. Even more millions are tasked with the sometimes difficult and frustrating daily care of those stricken with the memory-robbing disease, often with little experience or training.

But as the number of Americans with Alzheimer's has risen in the past few decades and continues to spiral upward, anecdotal and research evidence has accumulated on ways to make everyday life more bearable for those with the disease and to help those caring for them. It includes expanded knowledge of what works and what doesn't in areas of medication, living situations, everyday contact and more, and ranges from complex to simple solutions.

"There are times that it can be difficult to handle someone with Alzheimer's, but you have to have patience, and you have to put yourself in their shoes," said Teresa Dinau, a caregiver for Home Care Assistance, based in Palo Alto, Calif. "It's important to try to understand what they're going through."

Dr. Jacobo Mintzer, chairman of the Medical and Scientific Advisory Board for the Alzheimer's Foundation of America, said that the biggest initial problem for caregivers is often that "they're trying to preserve the person they knew as long as possible."

"That's usually where they get themselves into trouble," he said. "Because of this desperate need to try to preserve the person, caregivers will put themselves in dangerous situations, like letting the person with Alzheimer's drive because it has always been important to them."

Not pushing someone with Alzheimer's to be who they used to be makes some caregivers feel like they've given up on their loved one, added Mintzer, who's also a physician at the Ralph H. Johnson VA Medical Center in Charleston, S.C.

But he said that's not the case and that there are plenty of safe ways to keep a connection. If someone with Alzheimer's used to like to swing dance, for instance, and you put on music and swing dance with them, it will often be calming, he said. Or, people with Alzheimer's usually enjoy looking at photos from the past, according to the Alzheimer's Association.

Mintzer said there are no treatments currently available to alter the course of the disease. However, two types of medications have been approved in the United States to help with memory loss: a group of drugs called cholinesterase inhibitors (brand names include Aricept, Exelon, Razadyne and Cognex) and memantine (brand name Namenda). However, the Alzheimer's Association reports that these medications don't work for everyone and, on average, delay worsening of symptoms only by about six to 12 months.

Also, antidepressants, anti-anxiety and antipsychotic medications are used to ease some of the behavioral symptoms that can be a part of Alzheimer's disease, including agitation and anxiety. None of these medications have been specifically approved to treat Alzheimer's, however, so the Alzheimer's Association recommends discussing the risks and the benefits of any medication with a doctor.

Despite the limitations of existing medications, problem behaviors can sometimes be overcome with the right type of stimulation and care.

"We need to see ourselves as a therapeutic agent," said Mintzer. "Patients have needs. When social stimulation is diminished, patients tend to get agitated." He noted that sundowning—increased confusion and agitation that some people with Alzheimer's experience later in the day—"may occur because the amount of care goes down in the evening, whether at home or in a nursing home."

"Sit down and talk with them for five minutes every hour," Mintzer suggested. "Talk with them in a non-threatening manner. Share a meal, or even sit down and split a cookie. It may not meet your needs for a social interaction, but that's not the purpose of it."

Using a calm voice is always important, and it's often easier to redirect attention than to try to get your friend or loved one to change a behavior. It's important to acknowledge any questions or requests, even though it may be the fifth time in 10 minutes that you've been asked what the time is. Each request is new to them.

Dinau said that she tries to keep routines as normal as possible. Instead of letting someone have dinner in bed, she guides them to the table to eat and then has a conversation with them during dinner. "A little activity here and there really helps," she said.

Mintzer also said it's important to have routine structure. Things can change within a day, but try to keep activities similar. For example, if Tuesday is the day you go out to lunch together, make a doctor's appointment for Tuesday. Then, while you're on your way to lunch, you can say something like, "Do you mind if we stop at the doctor on our way?" That way, he said, you're not changing the routine but just adding an element to it.

An array of devices also exist now that can help make a home safer for someone with Alzheimer's. He said these range from the very simple drawer and cabinet locks used to keep young children away from dangerous items to more high-tech safety devices like motion sensors for the stove and tracking devices that can be worn by people with Alzheimer's in case they wander.

But there does come a time when the disease ravages the brain so significantly that someone with Alzheimer's can't consistently control their behavior, Mintzer said. "When they get this impaired, they lack the ability to understand reality and suffer from delusions," he said, adding that medications that treat symptoms can be helpful at this point.

Though people with Alzheimer's can often stay in their homes, Mintzer said that if that's no longer safe, it's time to start looking into long-term care.

"When this time comes may be very different for different patients," he said. "If you live in the middle of New York City and you have a grocery store downstairs, it's irrelevant that your loved one can't drive anymore. If you're loved one lives in rural North Carolina and can't drive anymore, they will starve and need assistance or long-term care earlier."

More information: Learn more about caring for someone with Alzheimer's on a special website for caregivers set up by the U.S. Department of Health and Human Services.