After the Diagnosis
Now that your family member or friend has received a diagnosis of Alzheimer’s disease, it’s important to learn as much as you can about the disease and how to care for someone who has it. You may also want to know the right way to share the news with family and friends.
Learning About Alzheimer’s
Sometimes, you may feel that you don't know how to care for the person with Alzheimer’s. This is a common feeling among caregivers of people with Alzheimer’s because each day may bring different challenges. Learning about the disease can help you understand and cope with these challenges. Here is some information about Alzheimer’s and ways you can learn more about it.
Alzheimer’s disease is an illness of the brain. It causes large numbers of nerve cells in the brain to die. This affects a person’s ability to remember things and think clearly. People with Alzheimer’s become forgetful and easily confused and may have a hard time concentrating. They may have trouble taking care of themselves and doing basic things like making meals, bathing, and getting dressed.
Alzheimer’s varies from person to person. It can progress faster in some people than in others, and not everyone will have the same symptoms. In general, though, Alzheimer’s takes many years to develop, becoming increasingly severe over time. As the disease gets worse, people need more help. Eventually, they require total care.
Alzheimer's disease consists of three main stages: mild (sometimes called early-stage), moderate, and severe (sometimes called late-stage). Understanding these stages can help you care for your loved one and plan ahead.
Mild Alzheimer’s Disease
In the mild stage of Alzheimer’s, people often have some memory loss and small changes in personality. They may have trouble remembering recent events or the names of familiar people or things. They may no longer be able to solve simple math problems or balance a checkbook. People with mild Alzheimer’s also slowly lose the ability to plan and organize. For example, they may have trouble making a grocery list and finding items in the store.
Moderate Alzheimer’s Disease
In the moderate stage of Alzheimer’s, memory loss and confusion become more obvious. People have more trouble organizing, planning, and following instructions. They may need help getting dressed and may start having problems with bladder or bowel control.
People with moderate Alzheimer’s may have trouble recognizing family members and friends. They may not know where they are or what day or year it is. They also may begin to wander, so they should not be left alone. Personality changes can become more serious. For example, people may make threats or accuse others of stealing.
Severe Alzheimer’s Disease
In the severe stage of Alzheimer's, people usually need help with all of their daily needs. They may not be able to walk or sit up without help. They may not be able to talk and often cannot recognize family members. They may have trouble swallowing and refuse to eat.
Learn More About Alzheimer’s Disease
So far, there is no cure for Alzheimer’s, but there are treatments that can prevent some symptoms from getting worse for a limited time. Here are some ways you can learn more about Alzheimer’s disease.
- Talk with a doctor or other healthcare provider who specializes in Alzheimer’s disease.
- Check out books or videos about Alzheimer’s from the library.
- Go to educational programs about the disease.
- Visit the websites www.nia.nih.gov/alzheimers or www.alz.org. The National Institute on Aging has a book, Caring for a Person with Alzheimer’s Disease, that can be viewed and ordered at www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease.
- Read about Alzheimer’s at www.nihseniorhealth.gov/alzheimersdisease/toc.html.
- Find a support group for caregivers, ideally one in which members are taking care of someone who is in the same stage of Alzheimer’s as the person you are caring for.
Talking With Family and Friends
When you learn that someone has Alzheimer’s disease, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. Others often sense that something is wrong before they are told. Alzheimer’s disease is hard to keep secret.
When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s disease. You can share information to help them understand what you and the person with Alzheimer’s are going through. You can also tell them what they can do to help.
You can help family and friends understand how to interact with the person who has Alzheimer’s.
- Help them realize what the person can still do and how much he or she can still understand.
- Give them suggestions about how to start talking with the person. For example, "Hello George, I'm John. We used to work together."
- Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something.
- Help them plan fun activities with the person, such as going to family reunions or visiting old friends.
Helping Children Understand Alzheimer’s
If the person with Alzheimer’s has young children or grandchildren, you can help them understand what is happening. Answer their questions simply and honestly. For example, you might tell a young child, "Grandma has an illness that makes it hard for her to remember things." Know that their feelings of sadness and anger are normal. Comfort them. Tell them they didn't cause the disease.
If the child lives with someone who has Alzheimer’s, don't expect him or her to "babysit" the person. Make sure the child has time for his or her own interests and needs, such as playing with friends and going to school activities. Spend time with the child, so he or she doesn't feel that all your attention is on the person with Alzheimer’s.
Many younger children will look to you to see how to act around the person with Alzheimer’s disease. Show children they can still talk with the person and help them enjoy things. Doing fun things together, like arts and crafts or looking through photo albums, can help both the child and the person with Alzheimer's.
Challenges for Teens
A teenager might find it hard to accept how the person with Alzheimer’s has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. Talk with teenagers about their concerns and feelings. Don't force them to spend time with the person who has Alzheimer’s.
For more information about talking with family and friends, see Helping Family Members and Others Understand AD. You can order a print copy of this booklet by calling 1-800-222-2225 or visiting www.nia.nih.gov