When your loved one is diagnosed with Alzheimer’s disease, many questions come to mind. First is the question “Is there a cure?” Unfortunately, there is no cure for Alzheimer’s disease. However, some drugs may improve or stabilize symptoms. Also, there are care strategies that may minimize or prevent behavioral problems. Learning more about these treatments and knowing what questions to ask your care recipient’s doctor can help you through this challenging and confusing time. New drugs are under development that offers hope for Alzheimer’s patients, and clinical trials test whether these treatments are safe and effective. Your loved one’s physician will give you more information about treatment options and clinical trials that may be right for your loved one. The resources listed on this page are a great place to start.
There is help in dealing with the stress of caregiving.
Coping with Caregiving
Take a minute. Sit down. As a family caregiver of someone with Alzheimer’s disease, you have a lot on your plate. There’s so much to learn about, so much to plan, so much to worry about. But you need to read this guide—not only for the person you’re caring for but for yourself.
Caring for someone with Alzheimer’s is a stressful job. It’s an emotional roller coaster of love, hope, anger, guilt, loneliness, and sadness. You will have to make tough decisions and consider questions you’ve never thought about before: What are my responsibilities toward my parent? How can I take Mom or Dad out of their home of 50 years? What does it mean to be in a marriage “in sickness and in health”? How can I balance my relationship with my loved one with the other relationships in my life?
Caring for someone with Alzheimer’s changes your life. Caring for someone with a dementing disease such as Alzheimer’s is typically more stressful than caring for someone with only a physical impairment. Many family caregivers—up to 47 percent, according to one study—experience depression. And many caregivers become overwhelmed by the strain of caring for a person with Alzheimer’s disease and experience stress, illness, sleep deprivation, premature aging, and depression. A study of caregiver health revealed that elderly spousal caregivers who experienced caregiver strain had a mortality risk that was 63 percent higher than that of control subjects. You will need help keeping yourself whole as your loved one needs more and more from you.
But you are not alone. Help is available—right in your own community. Keep reading about some of the issues you will face as a caregiver and where you can find help.
10 Signs of Caregiver Stress
Be aware of the “10 Signs of Caregiver Stress,” and talk to your own physician if you experience any of these:
- Denial about the disease and its effect on the person who’s been diagnosed
- Anger at the person with Alzheimer’s or others, anger that no cure exists, and anger that people don’t understand what’s going on
- Social withdrawal from friends and activities that once brought pleasure
- Anxiety about facing another day and what the future holds
- Depression that begins to break your spirit and affects your ability to cope
- Exhaustion that makes it nearly impossible to complete necessary daily tasks
- Sleeplessness caused by a never-ending list of concerns
- Irritability that leads to moodiness and triggers negative responses and reactions
- Lack of concentration that makes it difficult to perform familiar tasks
- Health problems that begin to take their toll, both mentally and physically
Forming Your Support Network
There are many people and resources out there that can help you through this challenging time. They include family and friends, support groups, in-home nursing care, day centers, health care providers, and residential facilities. Unfortunately, it isn’t easy to find the right combination of people and services to be your support network. Don’t get discouraged. Be sure to reach out and talk with others who know what you are going through and who have “walked in your shoes.” You don’t have to do it alone.
Speaking Alzheimer’s – how to communicate better
Many specific communication techniques are effective in reducing problematic behaviors and improving day-to-day functioning of people with Alzheimer’s and other dementias. Tips on communicating.
Tips for Family Caregivers from Doctors
There is much to be gained by improving communications between family caregivers and health care professionals—especially physicians. Positive outcomes include better care for the patient, less stress and illness for the caregiver, more efficient use of doctors’ time, reduced costs for the health care system, and more satisfaction for all concerned. Here are some tips on communicating with your loved one’s doctor:
- Write questions down so you won’t forget them.
- Be clear about what you want to say to the doctor. Try not to ramble.
- If you have lots of things to talk about, make a consultation appointment so the doctor can allow enough time to meet with you in an unhurried way.
- Educate yourself about your loved one’s disease or disability by reading and looking for information from reputable organizations online, such as the Fisher Center for Alzheimer’s Research at ALZinfo.org.
- Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
- Recognize that not all questions have answers—especially those beginning with “why.”
- Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
- Appreciate what the doctor is doing to help and say thank you from time to time.
Start to create your support network list by learning about the organizations and resources below. For a more comprehensive list, visit the Alliance for Aging Research’s website at www.agingresearch.org.
Physicians and Health Care Providers
National Association of Professional Geriatric Care Managers, Inc. (520) 881-8008. This organization can help you locate a geriatric care manager (GCM) in your area. GCMs are professionals that specialize in helping older adults deal with social problems.
Respite Care Services
Eldercare Locator (800) 677-1116. The Eldercare Locator, a public service of the U.S. Administration on Aging, connects you with your local Area Agency on Aging and local respite care services. Support Groups for Caregivers
This online support site provided by the Fisher Center Foundation provides a fun, personalizable environment for families, friends, and medical professionals to post messages, pictures, and favorite links, and it gives users the ability to stay connected with those in the Alzheimer’s community.
Find all types of resources in your area, from doctors to your state health insurance assistance program.
Create a free of charge, private, web-based community to organize family, friends, neighbors, and colleagues – a family’s circles of community – during times of need.
This website provides an online community where peers and professionals focus on the quality of life issues.
(800) 896-3650. By visiting the NFCA website or calling their toll-free number, you can find tips, newsletters, and a guide to national and local resources for caregivers.