If you're caring for a loved one with Alzheimer's, you're in plenty of company. Nearly 11 million people take care of the 5.3 million Americans with the disease, a number that's expected to grow to almost 16 million by 2050, according to the Alzheimer's Assn.
The demands of care-taking often place enormous pressure on a family's time and resources. A 2009 AARP and National Alliance for Caregiving survey found that caregivers — most commonly middle-aged women caring for a parent — give more than 20 hours of their time per week. Most say it interferes with work, and the longer someone is a caregiver, the more likely her own health is to suffer.
Experts say that handling the challenges of caring for someone with Alzheimer's depends in large part on the steps you take to reach out for support and information and devise a plan.
Get a thorough evaluation from a specialist. "You can get diagnosed incorrectly," says Nancy Foldi, director of the Neuropsychology Laboratory of Aging and Dementia at Queens College, City University of New York. Many families don't realize that some illnesses, such as urinary tract infections or depression in an older person, can look like dementia.
A comprehensive evaluation typically involves a full medical history, as well as psychological and neurological evaluations. And the key is to work with experts. "You need a medical provider who identifies dementia as a major interest in their practice," says Dr. Gary Kennedy, director of the Division of Geriatric Psychiatry at Montefiore in New York. "There are some family physicians and internists who are superb with people with Alzheimer's disease and other dementias. There are others who are not, and you may need to consult either a neurologist or geriatric psychiatrist."
Alzheimer's disease research centers are a good option for a comprehensive initial evaluation and treatment, and to connect with a group of Alzheimer's specialists for ongoing care. You can also inquire about research studies, something experts say can improve an Alzheimer's patients' cognitive abilities even if they receive a placebo.
The Alzheimer's Assn., which has chapters throughout the country, can help consumers locate specialists and research and treatment centers in their area. Call the 24-hour hotline at (800) 272-3900 or visit the association's national website (http://www.alz.org).
Services can also be located through the Family Caregiver Alliance's family care navigator, a state-by-state resource (http://www.caregiver.org).
For Southern California residents, a guide to local diagnostic centers and treatment resources can be found on the home page of the Alzheimer's Assn.'s California Southland Chapter's website (www.alz.org/californiasouthland).
Make financial and legal plans early. "Find an attorney who understands elder law and financial planning and get your house in order," advises Cathy Ladd, vice president of programs for the Alzheimer's Assn., California Southland Chapter.
According to Ruth Phelps, president of the National Academy of Elder Law Attorneys, a meeting with an elder-care lawyer should happen as soon as possible after an Alzheimer's diagnosis and include discussions about estate and long-term care planning, as well as putting in place or updating legal documents such as advance healthcare directives, wills and trusts. This is the time to discuss end-of-life wishes, such as whether a feeding tube or cardiac resuscitation will be used.
Failing to put legal structures in place before a person's memory declines often blocks family members from helping in a crisis. Without planning, "how do you help [your mom] pay her electric bill because no one else is on her bank account?" Phelps asks. "You can't step in and get into her bank or go to her doctor with her. The doctor won't tell you anything because of HIPAA," the federal law that protects patients' rights to privacy. "You come to a roadblock where the only choice is to go to court and be appointed conservator." Conservators are granted legal control to make medical, legal and financial decisions on someone's behalf. In California, the process can take four to six weeks.
Medicare does not cover long-term nursing-home stays, which can cost $60,000 to $200,000 a year, depending upon where you live. Unless you are able to pay yourself or have good long-term care insurance, you'll need help planning for the option to use the Medicaid system (called Medi-Cal in California).
For information about healthcare as well as legal and financial options, consumers can go to Help4srs.org, which provides information about healthcare documents, estate planning and more.
You can download advance directives for each state at the National Hospice and Palliative Care Organization's Caring Connections website (http://www.caringinfo.org). They can be filled out without the help of an attorney.
To find an attorney specializing in elder care, check the National Academy of Elder Law Attorneys' online directory (http://www.naela.org). In California, legal and financial services (as well as others) are available at no cost at 11 Care Resource Centers, a statewide system established by the California Department of Mental Health, including one in Los Angeles based at USC's Andrus Gerontology Center.
Don't go it alone. "Most people are going to need some help at home with the person they're caring for at some point," Kennedy says. Adult day services are one resource. They provide Alzheimer's patients with a safe environment in which to spend the day and caregivers some much-needed respite. Some programs are paid for by Medicaid, while others accept only private pay. Medicare does not cover the cost of adult day services.
California residents on Medi-Cal can access a program called In-Home Supportive Services (IHSS) (http://www.dss.cahwnet.gov/cdssweb/PG139.htm), which aims to keep seniors who might otherwise be placed in a nursing facility safely at home. Medicare doesn't cover in-home care (except for brief periods following hospitalization). But a three-year pilot project funded by the new health reform law will test the idea of in-home care coverage for Medicare recipients.
The Department of Health and Human Services offers an Eldercare Locater (eldercare.gov or  677-1116) to help families find aid such as home care, caregiver support services and transportation. The National Institute on Aging's Alzheimer's Disease Education and Referral Center (http://www.nia.nih.gov/alzheimers) also provides a wealth of resources.
Evaluate nursing homes carefully. Many families decide early on that they will never place their loved one in a nursing home or similar residence. Yet most people with the disease do, ultimately, move into some kind of residence providing professional care. That isn't necessarily a bad thing, says Dr. G. Allen Power, clinical associate professor of medicine at the University of Rochester, N.Y., and author of the book "Dementia Beyond Drugs: Changing the Culture of Care." "I've seen people get a lot better when they move to the nursing home because they get many shifts of people providing the care that one tired person was trying to do. They have better socialization, they have people who are more skilled … and all of a sudden, they come to life."
But many families worry about how to find a place that provides good care. The best way to determine the quality of care, experts say, is to ask about the nursing staff turnover rates. "That's the single most important criterion, because it's the nursing staff that is there with the patients," Kennedy says. "If 25% of the nursing home staff is turning over every year, that would bother me."
A new website (CalQualityCare.org), sponsored by the California HealthCare Foundation in partnership with UC San Francisco, helps consumers choose among available long-term care options in California. The site also rates the care provided by a number of long-term care providers. And Medicare has a tool called Nursing Home Compare (http://www.medicare.gov/nhcompare) that provides detailed information about nursing homes across the country.
Care for yourself as well. While looking after someone with Alzheimer's, try not to forget about yourself, says Carolina Rodriguez, study coordinator with UCLA's Easton Center for Alzheimer's Research. Look for support groups (the Alzheimer's Assn. is a good place to start), care-giving classes and ways to help you relax — be it meditation or stress reduction classes or time for a cup of coffee with friends — to help maintain your own health.