March 15th, 2011
12:01 AM ET
Caregivers of people with dementia provide 17 billion hours of unpaid care a year, at an annual cost of $206 billion, and all of this work and dedication is taking a toll on their health, according to the 2011 Alzheimer's Disease Facts and Figures, an annual report of the Alzheimer's Association.
"The caregivers are going to suffer as well with decreases in their quality of life, decreases in their own health and often shortening of life span," says Bill Thies, chief medical and scientific officer for the Alzheimer's Association.
In a little less than a decade,the number of caregivers for people with dementia has risen to almost 15 million – a 37% increase. And the around-the-clock care often means caregivers have little time to look after themselves. They put off doctor visits when their health starts to fail and forgo preventive care, skipping physicals and routine screening tests. And about a third of family caregivers have symptoms of depression, according to the report.
5.4 million Americans suffer from Alzheimer's and the numbers are expected to increase to 16 million by the middle of the century. Most of the cases are seen in people 75 and older, but the disease is not a normal part of aging. People who develop symptoms later in life usually live an average of four to eight years after diagnosis, but some survive for as long as 20 years.
There are things families can do to help with the burden of years of caregiving.
"Number One, learn about the disease. Families that understand the disease process cope much better," says Thies.
It helps to know that when a loved one starts to change and display odd or uncharacteristic behavior, that it’s the disease speaking.
"Also understanding that no one can deal with all the requirements of being a caregiver through all of the stages of Alzheimer's disease. You are going to have to have help," says Thies.
Day care for patients, services such as Meals on Wheels and home health care can help. And if families decide that the disease has progressed to the point of needing nursing home care, the Alzheimer's Association can assist in finding a facility.
There is no cure for Alzheimer's and no available treatment can stop the destruction of brain cells that leads to the progression of the disease. Some drugs can slow the worsening of symptoms but they work in only about half of patients for an average of 6 to 12 months. Six new drugs are in late stages of clinical trials but researchers won't know for two or three years which are effective.
From 2000 to 2008 death rates declined for most major diseases such as breast and prostate cancer, stroke, heart disease and HIV/AIDS, but for Alzheimer's, the rate climbed by a staggering 66 percent.
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