When you learn that you have a diagnosis of Alzheimer’s disease, you may hesitate to tell others. You may be coming to terms with the diagnosis yourself or fear that others may feel uncomfortable around you. It is true that your relationship with family and friends will change. But it is important to talk to the people in your life about Alzheimer’s disease and about the changes you will all experience together.
Talking about your diagnosis is important for helping people understand Alzheimer’s disease and learning about how they can continue to be a part of your life. The following suggestions may help:
- Explain that Alzheimer’s disease is not a normal part of aging but a disease of the brain that results in impaired memory, thinking and behavior.
- Share educational information on Alzheimer’s disease or invite family and friends to attend Alzheimer’s education programs.
- Be honest about how you feel about your diagnosis and allow other family members to do the same.
- Assure friends that although the disease will change your life, you want to continue enjoying their company.
- Let family and friends know when and how you may need their help and support.
Most people with Alzheimer’s disease continue to live at home even as the disease progresses. As a result, your partner may have to manage the household and your care. He or she may feel a sense of loss because of the changes the disease brings to your relationship. The following suggestions may benefit your relationship:
- Continue to participate in as many activities as you can.
- Modify activities to your changing abilities.
- Talk with your partner about how he or she can assist you.
- Work together to gather information about caregiver services and their costs, such as housekeeping and respite care, and start a file you can consult when they are needed.
- Seek professional counseling to discuss new factors in your relationship and changes in sexual relations.
- Continue to find ways in which you and your partner can fulfill the need for intimacy.
- Encourage your partner to attend a support group for caregivers.
Children often experience a wide range of emotions when a parent or grandparent has Alzheimer’s disease. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” College-bound children may be reluctant to leave home.
- Reassure young children that they cannot “catch” the disease from you.
- Be straightforward about personality and behavior changes. For example, you may forget things, such as their names, and say and do things that may embarrass them. Assure them that this is not their fault or intentional but a result of the disease.
- Find out what their emotional needs are and find ways to support them, such as meeting with a counselor who specializes in children who have a loved one diagnosed with Alzheimer’s.
- School social workers and teachers can be notified about what the children may be experiencing and be given information about the disease.
- Encourage children and teens to attend support group meetings and include them in counseling sessions.
- Record your thoughts, feelings and wisdom to “be with them” as they experience important events in their lives (graduations, dating, marriage, births and deaths).
- To help children and teens learn more about Alzheimer’s disease and understand how it affects you and them, we have a special Kids & Teens section. It includes printed resources, book reviews and links to sites that explain how the brain works.