March 15, 2011 -- The number of Alzheimer's disease caregivers in the U.S. is far larger than previously believed, according to a new report issued by the Alzheimer's Association.
"The number of Americans living in the U.S. as caregivers to someone with Alzheimer's or a different type of dementia is 15 million," says Maria Carrillo, PhD, of the Alzheimer's Association.
The caregiver numbers are up 37% from the 2010 figure, Carrillo says, largely because the association, which bases its estimates on statistics from the government, hadn't had access to an updated number to work with since 2000.
The new report, 2011 Alzheimer's Disease Facts and Figures, was released today.
Among other facts in the new report, an estimated 5.4 million Americans are now living with Alzheimer's disease. That number could reach 16 million by 2050, the Alzheimer’s Association warns, without progress in effective treatments to modify the brain disorder, which is marked by memory problems, impaired judgment, confusion, behavior changes and difficulty in speaking, swallowing, and walking.
The annual costs for health care, long-term care, and hospice care for Alzheimer's is now $183 billion, according to the report, up $11 billion from the 2010 figure.
The new report details what those in the Alzheimer's care community have known, says Elizabeth A. Crocco, MD, chief of geriatric psychiatry at the University of Miami Miller School of Medicine, who reviewed the information for WebMD but was not involved in developing the report.
"We've been preaching about this for a long time, that the numbers [with Alzheimer's] are going to go up and the caregiver numbers have been under-reported," she tells WebMD.
The number of caregivers is difficult for some to fathom, Carrillo says. To put the 15 million caregivers figure in perspective: if they all were in one state, it would be the fifth largest state.
Alzheimer's disease is the most common form of dementia, according to the Alzheimer's Association, accounting for about 60 to 80% of cases. It's the sixth leading cause of death in the U.S.
The caregivers provide 17 billion hours of unpaid care per year, Carrillo says, valued at more than $200 billion.
Those with Alzheimer's survive, on average, for four to eight years after the diagnosis, she says, but some live as long as 20 years, further straining the finances and lives of their loved ones.
Caregivers Under Stress
According to the report, 61% of caregivers polled report the stress as ''high" or ''very high," and 33% reported depression related to caregiving. While many with Alzheimer's are cared for in dedicated Alzheimer's units, Carrillo said many are cared for at home by unpaid loved ones.
Over time, she says, the disease takes its toll and caregiving becomes all-consuming.
"The individuals over time are no longer able to do anything for themselves," she says. The caregiver must see that the person eats on time, takes medication on time, and often must also tend to their personal hygiene and keep a watchful eye so they don't wander, a common behavior.
The report underscores the need for more research dollars, Carrillo says, so more effective medications can be developed.
Right now, about 75 experimental therapies meant to slow or stop the progression of Alzheimer's are in clinical testing in people, according to the report. Six drugs are in phase III (final) clinical development.
''Early detection is key," she says. According to the report, primary care physicians have access to simple, inexpensive tests that can be used in the office to screen for dementia.
For instance, there is the Mini-Cog test and the General Practitioner Assessment of Cognition. These tests are useful as routine assessments to identify those who require more complete testing, according to the Alzheimer's Association.
Resources for Caregivers
Crocco agrees that many people may think those with Alzheimer's disease typically live in an Alzheimer's care unit.
''What they don't realize is, it's a tiny fraction," she says. Many patients are cared for at home by unpaid family members. Often, a caregiver is a daughter of the patient, she finds, and often caring also for their own young children.
What can help the caregiver? "There are a lot of resources available to caregivers that they are totally unaware of," she says.
To find resources, she suggests caregivers contact a memory disorders center, geriatric social worker or geriatric psychiatrist in their community, or contact the Alzheimer's Association.
Among the options, she says, are day care centers for adults with Alzheimer's, respite care to give caregivers a break, and support groups to help caregivers deal with stress and depression.