Who's Caring for the Caregiver?
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.