Approximately 5 million Americans have Alzheimer’s disease. But that figure is only half the story of Alzheimer’s. For everyone who has Alzheimer’s disease or dementia, there is usually at least one other person who is their primary caregiver — struggling every day to keep their loved one healthy, fed, clean, safe and reasonably happy, while at the same time grappling with their own painful emotions at watching someone they love disappear by inches.
Sometimes the caregiver is a husband or wife, sometimes it’s a brother or sister, oftentimes it’s an adult child. But it doesn’t matter who it is, or whether or not the person with dementia is living at home, getting some care from a visiting nurse or adult day care service, or living full time in an assisted living center — there is almost always a loved one who bears the daily weight of worrying about their care.
It may be less physically taxing if the ill person is in a nursing home, but the emotional burden can still be crushing. Recent research from the University of Indianapolis found that caregivers of people with Alzheimer’s report that their greatest challenge is dealing with the emotional impact of watching their loved ones slip away and forget who they are.
“You are losing and grieving while you’re providing the care, because Charlie isn’t Charlie anymore,” said associate professor Jacquelyn Frank of the University of Indianapolis’s Center for Aging and Community. Studies have found that at least half of dementia caregivers have depression, and caregiving has also been linked to higher levels of infectious illness, such as respiratory tract infections.
So how do we care for the caregiver? In many ways, we don’t. Although people are often uncomfortable visiting someone who’s ill, there’s a whole new dimension to sickroom avoidance when dementia is involved. It’s one thing to visit a heart patient or even someone who has terminal cancer if they can still hold a conversation with you and share memories. But when the memory loss and personality changes of dementia set in, even longtime friends can become uncomfortable and shy away.
When my mother was diagnosed with dementia three years ago, the friends that she and my father had had for a lifetime began to fall away. Some loyally continued to visit, but others — people she had known for more than 50 years, including some women she considered her best friends — rarely called and never came by. At my mother’s funeral, someone she had once considered a beloved friend told me that she had visited our house for an antique sale two months before my mother’s death. She had found time to get to the sale — but hadn’t called, written or visited my mother in more than two years.
My parents went from an active social life to virtual seclusion. Until my mother finally entered a nursing home six months before she died, my father cared for her by himself, with assistance from home health aides. Like many Alzheimer’s caregivers, he’s in poor health himself, with congestive heart failure and post-polio syndrome.
This doesn’t happen for everyone, or to such a degree. (It’s often worse when the partner with dementia is the one who maintained the couple’s friendships, as my mom did.) But it happens often enough. So if you can’t necessarily rely on your friends for help when you’re caring for someone with dementia — or if you need more help than they can give — whom can you rely on? Fortunately, there are a number of services, tools and resources available.
Your first stop should be the Alzheimer’s Association (www.alz.org), the leading voluntary health organization in Alzheimer care and research. The association is also a major source of support, and its “Caring for Alzheimer’s” section online (under the “Living With Alzheimer’s” link) can connect you with local support groups — as well as message boards and live chat rooms — help you find housing or respite care, advise you on coping problems, and coordinate care through their Personal CareFinder. You can also call them 24 hours a day, seven days a week at (800) 272-3900 — even if you don’t have a specific question to ask and just need someone to talk to.
This month, the Alzheimer’s Association is holding its big annual gala at the National Building Museum on March 25. Since it began in 2004, the widely attended event has raised more than million for cutting-edge research and critically needed assistance for Alzheimer’s patients — as well as their families and caregivers (also see “Remembering Importance of Alzheimer’s” in the April 12, 2007, news column of the Diplomatic Pouch online). This year’s gala will honor French President Nicolas Sarkozy for his .4 billion plan to fight Alzheimer’s in France, where as many as 860,000 people currently have the disease — a number estimated to grow to as many as 2.1 million by 2040.
Likewise, as baby boomers all around the world age, the problem of dementia will boom as well. The Alzheimer’s Association reports that the latest worldwide estimate of Alzheimer’s disease prevalence shows that more than 26.6 million people are living with dementia. Researchers predict this number will quadruple by 2050 to more than 100 million, at which time 1 in 85 persons worldwide will be living with the disease. That also means more centers and support groups to help the hidden victims of the disease (see sidebar below).
So if you’re caring for someone with dementia, you don’t have to go through it alone. You may not be able to rely on the people you thought you could, but there’s always help available.
SIDEBAR Remember, You’re Not Alone A number of organizations and centers offer support to help caregivers cope with the stress of Alzheimer’s, so that they in turn can better help their loved ones.
In addition to the Alzheimer’s Association (www.alz.org), be sure to check out Alzcast (www.alz.org) for outstanding personal, scientific and educational perspectives on caregiving via online podcasts.
Also try: — The Alzheimer’s Disease Education and Referral Center of the National Institute on Aging (www.alzheimers.org, (800) 438-4380) — The Alzheimer List, an e-mail-based support group offered by the Washington University Alzheimer’s Disease Research Center (http://alzheimer.wustl.edu/adrc2/alzheimerlist/) — Forgetful Not Forgotten, a Web site aimed at caregivers in Canada with plenty of great resources for others as well (www.forgetfulnotforgotten.com) — “The Tangled Neuron: A Layperson Reports on Memory Loss, Alzheimer’s and Dementia” is a particularly excellent blog on the subject where you’ll also find links to some two dozen other family-caregiver dementia blogs (www.tangledneuron.info/).
And books that should be on your bookshelf include: — “The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life” by Nancy Mace and Peter Rabins — “The Forgetting: Alzheimer’s: Portrait of an Epidemic” by David Shenk — “There’s Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer’s” by Michael Castleman, Matthew Naythons and Dolores Gallagher-Thompson — “Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease” by Joanne Koenig Coste — “A Dignified Life: The Best Friends Approach to Alzheimer’s Care” by Virginia Bell and David Troxel — “Talking to Alzheimer’s: Simple Ways to Connect When You Visit with a Family Member or Friend” by Claudia Strauss (try loaning this one to uncomfortable or anxious friends).
About the Author
Gina Shaw is the medical writer for The Washington Diplomat.