Sources of Information and Support for Alzheimer's Disease
Learn valuable resources where an Alzheimer's caregiver can go for practical guidance, medical referrals, and emotional support.
Alzheimer's can be a complex and challenging disease to deal with, both for patients and for their caretakers and loved ones. Thankfully, a number of public and private organizations are available to supply both needed help and essential information to Alzheimer's patients and caregivers.
Most of this help and information is available online, through the Web sites of such groups as the Alzheimer's Association, the Alzheimer's Foundation of America and the National Institute on Aging. People who are not Web-savvy can also reach these groups by mail or phone, or by reaching out to a local Alzheimer's Association chapter.
"We have Alzheimer's Association chapters nationwide, 77 chapters with 300 offices throughout the country," says Peter Reed, PhD, senior director of programs for the Alzheimer's Association. "There are also local agencies, called "Area Agencies on Aging," that provide a link to resources for older adults, but they don't have specific focus on Alzheimer's."
Assistance in Managing Alzheimer's
Alzheimer's patients who want to plan and prepare in advance for the progression of the disease can receive good guidance from the Alzheimer's Association and the Alzheimer's Foundation. The advice covers such topics as setting up your finances, naming someone as your guardian, preparing a living will and other potential legal issues that could arise. "Through preparation, Alzheimer's patients can have a voice in what's going to happen to them," Reed says.
Caregivers also can find practical advice from such groups. The Alzheimer's Association and the Alzheimer's Foundation offer education and training for caregivers. They also provide message boards and support groups through which caregivers can swap info or simply offer a comforting ear. "The message boards provide lots and lots of different types of information," Reed says.
The Alzheimer's Association Web site also offers a Caregiver Stress Check, which can help you to determine just how high your stress level is, info on what you can do to manage stress, as well as a CareFinder service to help you get the assistance you need when you need it. Other groups that help caregivers connect and provide useful information include the Children of Aging Parents, the National Family Caregivers Association, and the Well Spouse Association.
These groups also help put people in touch with the day-to-day support systems they will need. Chief among these is respite care, in which a nurse or social worker steps in to provide care while the patient's caregiver runs errands or takes a needed break.
Alzheimer's: Help in a Crisis
In the event of a serious emergency, Alzheimer's caregivers are advised to dial 911. But if the crisis seems manageable, the Alzheimer's Association and the Alzheimer's Foundation offer toll-free help lines that can provide the information you need. The association's 24-hour helpline number is (800) 272-3900; the foundation offers a social worker hotline at (866) 232-8484. Either number can provide assistance in getting you through the situation.
The Alzheimer's Association also offers a service to help find an Alzheimer's patient who has wandered off. The MedicAlert+Safe Return program helps police and local Alzheimer's support groups mobilize when a person has wandered. To enroll in the program, call (888) 572-8566. To report a person who has wandered, call 911, then call (800) 625-3780.
Alzheimer's Organization Contact Information
Alzheimer's Disease Education and Referral Center (ADEAR)
P.O. Box 8250
Silver Spring, Md. 20907-8250
(301) 495-3311 or (800) 438-4380
225 North Michigan Ave.
Chicago, Ill. 60601-7633
Alzheimer's Foundation of America
322 Eighth Ave.
New York, N.Y. 10001
Children of Aging Parents
P.O. Box 167
Richboro, Pa. 18954
Family Caregiver Alliance
180 Montgomery St.
San Francisco, Calif. 94104
National Family Caregivers Association
10400 Connecticut Ave.
Kensington, Md. 20895-3944
(301) 942-6430 or (800) 896-3650
Well Spouse Association
63 West Main St.
Freehold, N.J. 07728
(800) 838-0879 or (732) 577-8899