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, there are drugs that may improve or stabilize symptoms. In addition, 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 difficult and confusing time.
New drugs are under development that offer 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. You can also find out more on the Internet. The resources listed in this article are a great place to start.
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. In fact, 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. In fact, 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 Alzheimer’s Association’s “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 hold
- 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 difficult 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.
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.
Physicians and Health Care Providers:
National Association of Professional Geriatric Care Managers, Inc.
(520) 881-8008, A professional Geriatric Care Manager (GCM) is a health and human services specialist who helps families who are caring for older relatives. The GCM is trained and experienced in any of several fields related to care management, including nursing, gerontology, social work, or psychology.
Respite Care Services:
(800) 677-1116, The Eldercare Locator, a public service of the Administration on Aging, U.S. Department of Health and Human Services, is a nationwide service that connects older Americans and their caregivers with information on senior services. The goal is to provide users with the information and resources that will help older persons live independently and safely in their homes and communities for as long as possible.
Support Groups for Caregivers:
ElderCare Online is a beacon for people caring for aging loved ones. Whether you are caring for a spouse, parent, relative or neighbor, we are committed to providing an online community where supportive peers and professionals help you improve quality of life for yourself and your elder.
National Family Caregivers Association
(800) 896-3650, The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
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.
Tips for Family Caregivers from Doctors
There is much to be gained by improving communication 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.
- 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.”
- Remember, you are both on the same side. 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.
- Appreciate what the doctor is doing to help and say thank you from time to time.
This article was excerpted, in part, from “Resources for Caregivers, Alzheimer’s Disease: Helping Yourself Help a Loved One,” a brochure produced by the Alliance for Aging Research and the National Family Caregivers Association.
Source: www.ALZinfo.org. Preserving Your Memory: The Magazine of Health and Hope; Winter 2007.