The McGowan Institute for Regenerative Medicine faculty member Steven DeKosky, MD, Director of the University of Pittsburgh Medical Center’s Alzheimer's Disease Research Center and Chairman of the Department of Neurology, is very familiar with the many painful changes that families struggle to understand and deal with as Alzheimer’s progresses. As care in the familiar surroundings of home may delay onset of some symptoms and delay or eliminate the need for more professional and costly levels of care, the role of family caregivers has become more prominent.
Alzheimer's disease (AD) is a neurodegenerative disease that, in its most common form, is found in people over the age of 65. Alzheimer's is a major public health challenge since the median age of the industrialized world's population is increasing gradually. Today, home-based care for Alzheimer patients may entail tremendous economic, emotional, and even psychological costs. Family caregivers often give up time from work and forego pay to spend 47 hours per week on average with an affected loved one who frequently cannot be left alone.
The disease scrambles far more than memory. It plays havoc with mood, personality, perception, and thought, and can require constant adjustments by friends and relatives just to keep life on an even keel. Calm, easygoing people may turn anxious and prone to fits of rage. Patients may wander and get lost, sleep by day and stay up all night, demand to drive when they no longer can, turn on an empty oven, refuse to bathe, and accuse others of stealing items they have lost. Family members are sometimes shocked and cannot help wondering if the disease has peeled back inhibitions to expose an ugly side that the patient was repressing all along.
“To put a meaning on it is tough,” said Dr. DeKosky. “I think it’s unfair. Half of what they say is so nonsensical to begin with, to impute lifelong suppression, I would doubt that. It’s too Freudian for me.”
It is pointless to argue, correct, reason, explain, or try to teach someone with dementia. Instead, experts say, agree, soothe and distract; enter the patients’ skewed world and try to see things their way. But that is easier said than done, especially as exhaustion mounts, patience wears thin, and the disease only gets worse.
For some, support groups for caregivers are a lifeline, along with adult day-care programs. Among the most successful are programs that let Alzheimer’s patients spend time around children. In some communities, night-care programs are also available for restless patients, to give caregivers a chance to sleep.
Approximately 24 million people worldwide have dementia of which the majority (~60%) is due to Alzheimer's. By 2040, it is projected that this figure will have increased to 81 million. In the U.S., AD was the 7th leading cause of death in 2004, with 65,829 number of deaths (and rising). At over $100 billion per year, AD is the third most costly disease in the U.S., after heart disease and cancer. The U.S. federal government estimates spending approximately $647 million for AD research in fiscal year 2005.
International Herald Tribune/France (12/26/07)