“Whatever you do, don’t tell Dad about his Alzheimer’s disease.”
Doctors hear this line often. The families who say it are afraid that the truth will devastate their loved one and lead to hopelessness and depression.
Some physicians may comply, but most believe it’s a patient’s right to be fully informed about his or her situation. Even patients living with dementia deserve to hear the truth. “Plain, truthful talk allows everyone to come together, be supportive, give lots of loving help, and make a game plan for care,” says Dr. Lakelyn Hogan, Home Instead gerontologist and caregiver advocate for Home Instead, an international in home care company that has helped thousands of families coping with Alzheimer’s disease.
Consider Margaret’s experience: Margaret’s family was so worried about her reaction to her Alzheimer’s diagnosis that they faxed the doctor and left frantic voice messages insisting he not tell Margaret anything. The doctor ignored their requests and laid it out fully for her. Her response? “I knew it! I’ve seen those ads on television about those memory pills!”
Like many people, Margaret found it comforting to finally understand the truth about her memory loss. While families dread this moment, in many cases it’s almost a non-event for the person living with dementia. He or she may already know something is wrong. Others may be protected from the bad news by their forgetfulness, or not fully understand or retain the information.
Keeping a diagnosis secret makes it very hard to formulate a game plan for success. How can you get to the Alzheimer’s education workshop, support group or start using helpful services if the diagnosis is not revealed? Starting your family member on a recommended memory care medication or treating depression can be extremely difficult if you’re keeping a secret.
If you’re facing the challenge of sharing a dementia diagnosis with a loved one, consider following these steps:
- Learn all you can about dementia so that you can speak to your family member with confidence and answer questions.
- After the physician has explained the situation, take an upbeat approach. Tell your Mom that she is not alone, that many people have this diagnosis, and that there is a lot of life left! If you don’t want to use medical terms like Alzheimer’s disease or dementia, just remind her that the doctor says she has some “memory problems.”
- Answer your loved one’s questions fully, but stress the positive—for example, that memory pills may help, and that research continues around the world to find a better treatment or cure.
- Stress that you will travel the journey with your family member or loved one. Your optimism and positive tone will be comforting.
Most importantly, have empathy for the person in your care, and communicate with an upbeat, positive spirit. Provide loving support and engage your loved one in meaningful activities that build their sense of purpose and self-esteem. If the journey becomes overwhelming for you, consider joining a support group, participate in family caregiver educational opportunities, and hire others to help you. You and your family member do not have to travel this path alone. Travel companions can help you make the most of every day.
What to Do After the DiagnosisWhat should a family do after their loved one has been diagnosed with Alzheimer's disease or a related form of dementia? In this video, David Troxel, an Alzheimer's and dementia care expert, discusses helpful next steps.
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To find a caregiver in your area, contact your local Home Instead office.