June 7, 2001 -- When Orien Reid found out her mother had Alzheimer's disease, she was devastated. As a result, she had some difficulty processing exactly what the doctor told her about the disease and its treatment.
She's not alone in that reaction. Results of a new survey suggest many caregivers feel exactly as Reid did in 1988 when her mother was diagnosed. Reid is a social worker and is now the chair of the Alzheimer's Association's National Board of Directors.
There's a major kink in the communication line between doctors and caregivers, according to a survey released Thursday at an American Medical Association meeting on Alzheimer's disease, held in New York City.
Alzheimer's disease is a progressive, degenerative disease of the brain affecting about four million adults. It usually begins gradually, causing a person to forget recent events or familiar tasks, and eventually causes confusion and personality and behavior changes. Estimates suggest that about 14 million Americans will have Alzheimer's by the middle of this century due to the rapidly increasing numbers of Americans living into old age.
More than 90% of 500 primary care doctors surveyed said they give caregivers information about how the disease will affect daily living, but only 28% of almost 400 caregivers surveyed said they received such information. What's more, 91% of doctors said they give caregivers information on available drugs and what to expect from them, but just 41% of caregivers reported actually receiving this information.
"There's a huge gap between what primary care physicians say they are telling family caregivers and what family caregivers say they are hearing -- and all this impacts the treatment and care of a person with Alzheimer's," Reid says. "I suspect that when the diagnosis is Alzheimer's disease, you go into such shock that you can't absorb any more information."
"The right information in the right dose at the right time," she says. "If families don't have the information that they need, they miss the opportunity to give proper care to a loved one in this early stage."
One thing that doctors and caregivers agree on is that early diagnosis of Alzheimer's disease is important; however, few doctors have clearly communicated that the quick diagnosis is important because treatments are more effective when initiated early and that it's possible to slow the progress of the disease.
To bridge the communication gap, "doctors should call the caregiver back a couple of weeks later and check in to see if they have questions," says Reid.
And the phone works both ways. "The caregiver can call the doctor and make an appointment and ask questions then," she says. "If you don't understand something, ask."
Also, she says, call the Alzheimer's Association for support. That's one of the first things that Reid did when her mother was diagnosed, and it helped her find appropriate care.
Caregiving can be extremely stressful, says Steven H. Zarit, PhD, professor of human development and the assistant director of the gerontology center at Pennsylvania State University in University Park. As many as 70% of caregivers report some symptom of depression.
Most care comes from family members, including dressing, bathing, and watching so the loved one doesn't wander off, all the while balancing work and family responsibilities, he says.
"Learn how to manage everyday problem behaviors associated with Alzheimer's, such as formulating new responses when the patient keeps repeating questions," he suggests.
He also suggests mobilizing family support. New research shows that family meetings can reduce caregiver burden and family distress.
Another suggestion: "Consider adult care in or out of the home," he says.
Zarit has found that when a person with Alzheimer's disease receives outside care two days a week there's significantly lower care-related stress or depression for caregivers, a benefit that was maintained for longer than one year.
Still, just three of 10 caregivers receive outside help, and it may be because the cost can be prohibitive.
In the new survey, 88% of doctors said they provided information on where to find help and services, but just 31% of caregivers say they got such information.
"The idea that there's nothing caregivers can do to relieve their own stress is wrong," he says.
According to the Alzheimer's Association, there are seven steps you can take to ensure you are a healthy caregiver: