Caring for someone with Alzheimer's disease (AD) involves a significant amount of time and energy. It is painful to watch someone you love become less able and finally unable to care for him - or herself. There are financial strains on the family, legal decisions to make, planning for the future and many new responsibilities to take on as the person loses the ability to carry them out. The responsibility and work involved can be rewarding, but it also creates stress. Caregivers are often referred to as the hidden victims of the disease. Too often caregivers don't recognize their own needs. Taking care of yourself will help you be a better caregiver.

Addressing all the important issues and problems with caregiving for someone with AD is beyond the scope of this website. We do want to help you locate further information. Please refer to the find help section of this web site.

According to an Alzheimer's Association survey, more than 80% of caregivers report they frequently experience high levels of stress. Additionally, nearly half of caregivers say they suffer from depression. Both stress and depression are not healthy for you, the caregiver, or for the person with AD you are caring for. Please read through the sections below:

• Depression
• Stress warning signs
• Tips to reduce stress
• Respite care
• Suggestions for further information

Depression
The boundary between sadness that we all experience from time to time and the illness, depression, is not well defined. Some people may seek treatment for relatively mild feelings of sadness, while others may avoid treatment even though they are severely depressed. Again, nearly half of caregivers suffer depression. If you are experiencing several of the symptoms below, please talk with your physician. In addition to depressed mood, symptoms of depression include:

• Decreased interest in usual activities
• Insomnia (although some depressed people oversleep)
• Decreased appetite and weight loss (although some depressed people overeat and gain weight)
• Reduced ability to experience pleasure
• Difficulty concentrating
• Loss of interest in sex
• Fatigue, loss of energy
• Feeling worthless
• Feeling guilty
• Feeling helpless and without hope
• Reduced self-esteem
• Crying
• Anxiety, restlessness and agitation
• Irritability, inappropriate anger
• Physical symptoms (such as headache, digestive problems and pain)
• Wishing to be dead
• Thoughts of suicide and suicidal behavior

Not everyone who is depressed has all the symptoms listed above. Symptoms may differ from person to person and over time in the same person. For example, some people may have insomnia and lose weight while depressed, whereas others may oversleep, overeat and gain weight.

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Stress warning signs
Stress is caused by the added responsibilities a caregiver experiences and the significant amount of time and energy involved in caring for a person with Alzheimer's disease. A caregiver's acceptance of the illness and coping skills in handling change are also factors. It is important to recognize if you are overly stressed and need to take better care of yourself. The following stress warning signs are adapted from the Alzheimer's Association guidelines on caregiver stress:

• Irritability
• Anger at the person with Alzheimer's disease or at others
• Social withdrawal from friends and previously enjoyed activities
• Anxiety about the future or even facing another day
• Depression, affecting your ability to cope
• Exhaustion, making it nearly impossible to complete necessary daily tasks
• Sleeplessness because of a never-ending list of concerns
• Lack of concentration, making it difficult to perform daily tasks
• Health problems, mental and physical, or you just don't feel well
• Denial about the disease

The overlap between symptoms and signs of depression and stress is obvious. An open discussion of your feelings and experiences with your doctor will be helpful in sorting out steps to take to reduce depression and stress.

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Tips to reduce stress
After reading through the stress warning signs, you may find that stress has affected your life. The Alzheimer's Association has offered the following suggestions to help you reduce stress:

• Get a diagnosis and begin treatment of Alzheimer's disease (AD) or other dementia as early as possible. Almost all diseases are best managed by starting early before problems become severe. Alzheimer's disease is no exception. As symptoms of AD come on gradually, it may be hard to come to a conclusive diagnosis early in the course of the illness. But once you know what you're dealing with, you'll be better able to manage the present and plan for the future.
• Find help. Locate your community AD resources and support groups. Seek family support and professional help. Please refer to our find family services section.
• Educate yourself. There is much written about caring for a person with AD that will make your job easier and your life less stressful. Please refer to our reading list.
• Pay attention to yourself. Watch your diet, exercise and try to get enough rest, relaxation and recreation for yourself.
• Manage your level of stress. Stress can cause physical problems (stomach problems, high blood pressure) and behavior problems (irritability, lack of concentration, loss of appetite). Consult a physician if these problems occur. Also try relaxation techniques.
• Accept changes as they occur. However, not all changes should be accepted. Sudden or large changes in the patient suggest a need for re-evaluation of treatment options and should be discussed with the doctor. A caregiver's role changes as AD progresses. At some point it may not be possible to provide home care. Look into available care options that will make transitions easier when needed before a crisis occurs.
• Do legal and financial planning. Planning now will alleviate stress later.
• Be realistic. At this time there is no cure for AD. You cannot control many of the problems and behaviors that will occur. Give yourself permission to grieve for the losses you experience. Also focus on happy moments as they occur and enjoy your good memories.
• Give yourself credit, not guilt. You're only human. Do the best you can and give yourself credit for that.

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Respite care
Caregivers need time away from caregiving, both to handle other responsibilities and to relax. Remember, you will be a better caregiver if you take care of yourself. Respite services provide care for the individual with Alzheimer's disease, giving the caregiver time-off. Informally, family members and friends may be available to help. Formally, there are often community services that can help you locate adult day service centers and volunteer or professional caregivers to come into your home. Arrangements can be made for several hours in a day, overnights, weekends and weeklong vacations.

How can you locate respite services? Two national organizations, the Alzheimer's Association and the Alzheimer's Disease Education & Referral Center operate as referral services. Additionally, these organizations can answer other questions you may have. Also, your State Office on Aging will have resources for you to contact. Consult the Federal Administration on Aging web site to obtain current addresses and telephone numbers for state offices. The agency also operates a nationwide service, the Eldercare Locator, that you can access online.

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Suggestions for further information
Educate yourself so you can understand Alzheimer's disease and find ways to cope with its symptoms. As a starting point, we recommend contacting the Alzheimer's Association, a nonprofit organization dedicated to providing support and education to people with Alzheimer's disease, their families and their caregivers. The Association has a 24-hour phone line, 800-272-3900, where you can ask specific questions and find support groups. Additionally, you can order brochures and books on a wide variety of topics, such as enhancing your home to make caring for someone with Alzheimer's disease easier, understanding legal issues and ensuring safety. Single copies of brochures are free. Much of this information is also available on the Alzheimer's Association web site.

There is an enormous amount of information out there. It's not easy to decide which books to read, which web sites to visit and which agencies to call. In our find help section we have a reading list with some of the best and most recent books. There is a listing of helpful web sites with online links. Most important, the find a clinician and find family services sections will assist in your search for medical resources.

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