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Sharing Alzheimer's diagnosis: Tips for caregivers

Updated: 08-18-2020

If you're caring for someone who has been diagnosed with Alzheimer's disease or other disorders causing dementia, you might wonder how best to tell others. If the person wants you to share the diagnosis, how will you do it? Whom should you tell? How will family and friends react? Will they know how to interact with the person? Consider these caregiving tips for sharing a dementia diagnosis.

Getting started

The period immediately after a loved one is diagnosed with dementia can be stressful and frightening. You both might be struggling to come to terms with the diagnosis. The person with dementia might not want to let others know about the diagnosis out of fear that they will become uncomfortable around him or her. You might feel torn between wanting to respect the person's privacy and needing to talk to someone about the diagnosis and how your role will change as a caregiver.

If possible, discuss how the person with dementia wants to handle the situation and get permission before sharing the information. Ideally, you'll explore the subject while he or she is still able to express personal wishes. If he or she is unable to do so, ask his or her legal decision-maker for guidance. If you're the legal decision-maker, act in the person's best interests.

If you're anxious about how to share the diagnosis, keep in mind that family and friends might already have a sense that something is wrong. If you're afraid that informing others about the diagnosis will be a burden on them, consider the alternative: Keeping the diagnosis a secret could be draining for you. The sooner you tell family and friends, the sooner they can begin giving you and the person with dementia much-needed support.

What to say

When telling family and friends about a dementia diagnosis, consider:

  • Explaining the disease and its effects. Make sure your family and friends understand that dementia is a disease in which brain cells waste away and die, causing a decline in memory and thinking over months to years. Explain the symptoms the person with dementia is likely to experience and how the disease might progress. Learning about dementia might help family and friends feel more comfortable around the person, as well as prepare for the future.
  • Sharing resources. Provide educational material from organizations such as the Alzheimer's Association. Let family and friends know about any local support groups.
  • Asking for help. Tell family and friends how they can help. Explain that social interaction can support the person's preserved abilities and skills. If you need caregiving support, ask specifically for what you need, such as help getting groceries.

If you're explaining a dementia diagnosis to a child, consider his or her age and relationship to the person to determine how much to share. You might say, "Grandma has a sickness in her brain that's causing her to forget names."

Try to answer questions simply and honestly and listen to the child's concerns. Explain that sadness or anger is normal and that the person with dementia didn't cause the disease.

Helping family and friends know how to act

Once you share the diagnosis, explain what the person with dementia can still do and how much he or she understands. You might offer suggestions for interacting, such as by having people briefly reintroduce themselves and avoiding correcting the person if he or she forgets something. Encourage people to engage in activities familiar to the person with dementia.

A young child might look to your example to know how to act around a person who has dementia. Show that it's OK to talk and play music or do simple crafts. Older children might have a harder time accepting the changes dementia can cause and might feel uncomfortable spending time with the person. Avoid forcing the issue.

Keep in mind that some family and friends might also have trouble handling the diagnosis. They might be in denial, have misconceptions about dementia or feel uncomfortable, despite your best attempts to help.

Telling family and friends about a loved one's dementia diagnosis can be difficult. Being honest and providing information about Alzheimer's disease can go a long way toward helping others understand the situation.