Tomorrow is Alzheimer’s Action Day, a day dedicated to raising awareness about–and one day eliminating–a disease that afflicts more than 5 million Americans and 35 million people worldwide. (September is also World Alzheimer’s Month.)
With an aging population (baby boomers are turning 65 at the rate of 8,000 a day), the number of people who have symptoms of Alzheimer’s (problems with memory, thinking, and behavior) are only going to go up. In fact, by 2050, the number of people with Alzheimer’s could triple. Here’s what you need to know.
1. Alzheimer’s isn’t “normal” aging. Run-of-the-mill memory loss shouldn’t be confused for Alzheimer’s. We all suffer from memory lapses from time to time and it’s often caused by nothing more than sleep deprivation, stress, or maybe a vitamin deficiency. Alzheimer’s, which can vary from brain to brain, is a form of dementia that is progressive; it may start with someone forgetting what you just said or repeating things over and over again and worsen to the point where the person is disoriented and can’t reason, talk, or move.
2. Alzheimer’s affects the whole family. In 2012, 15.4 million family and friends provided 17.5 billion hours of unpaid care to those with Alzheimer’s and other dementias, according to the Alzheimer’s Association.
“Spouses and adult children (and sometimes grandchildren) tend to take care of the person as the disease progresses, mostly in their homes, because ‘it’s just what families do,’” says expert Paula Spencer Scott, author of Surviving Alzheimer’s (November 2013), who has had four family members with dementia and was recently a panelist with Leeza Gibbons for Conversations in Caregiving at AlzheimersDisease.com.
“Caring for a family member with Alzheimer’s can be an emotionally, logistically, physically, and financially taxing job for which few of us are prepared,” she says. “And it can go on for years as you watch the person you love recede in slow motion. That’s a unique package of stressors–on relationships, on jobs, and on health.”
3. Alzheimer’s takes a big toll on caregivers. More than 60% of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; more than one-third report symptoms of depression, according to the Alzheimer’s Association.
That’s why keeping yourself and your well being high up on the priority list is so important, says Scott. “It’s easy to put everybody else’s needs first–lack of time, lack of sleep are very real issues –but there’s some pretty compelling evidence that the demands of caregiving can be pretty toxic on a person’s mental and physical health,” she says.
In fact, thanks to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers racked up $9.1 billion in additional health care costs of their own in 2012.
4. There is no cure for Alzheimer’s–yet. The five FDA-approved drugs available today mask the symptoms but don’t currently treat the causes of Alzheimer’s. Part of the purpose of Alzheimer’s Alert Day is to raise awareness about the need for more research. Meanwhile, some progress is being made. A study published in a recent issue of the journal Neuron revealed that fluorescent compounds used in brain scans prove might help researchers diagnose the disease, monitor treatment effectiveness, and test new drugs.
Even if a cure were found tomorrow, it’s likely it would benefit people in the earliest disease stages, says Scott. “That leaves millions who already have the disease who need effective treatments,” she says. In the absence of medications that can stop or reverse the progression of the disease, treatment still has to rely heavily on hands-on care and attention, responding appropriately to behaviors, and providing love and security, she says. “It comes down to those all-consuming things that families do. It will keep coming back to families.”
5. It really does take a village. If you’re caring for someone with Alzheimer’s, it’s critically important that you realize you can’t go it alone, says Scott. “You need practical help as well as emotional support.” Talk to the patient’s doctor for suggestions and reach out to Alzheimer’s organizations (Alz.org, Alzheimersdisease.com), which might have local chapters, or a site like Caring.com, which specializes in supporting families. How critical is it to find your “village”?
“It’s actually common for caregivers to get too sick to continue or to be outlived by the person with Alzheimer’s. So you have to see your own self care as something you’re doing for the good of the person in your care,” Scott says.