For Alzheimer's Caregivers, Patience and Compassion Are Key

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

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By Serena Gordon
HealthDay Reporter

FRIDAY, Feb. 22 (HealthDay News) -- 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."