On the Alzheimer List (from Washington University ADRC) we have dealt with this many times and for people in many stages of the disease. Bottom line...there are a few rules:
We feel the patient always has the right to know
The patient may cry, grieve, or respond negatively...but it is their honest and desirable response to a significant loss.
If they ask for details, tell them; if they seem to forget, let it go. * Even is the final stages of AD patients are capable of comprehending at some level -- they tell us this during lucid moments.
Always treat the patient with simplicity, compassion, and honesty.
Tell the patient at their best time of day in a quiet place that is free of distractions, tv, and other people -- You would be amazed at the number of people who do this in a crowded room or with the tv on. Take the person's hand and don't be afraid to let them see you cry. The non-verbal expression of tears is a powerful communicator.
If the person is capable of moving, you may want to take them to the funeral depending on behavior and cultural preferences.
Reminisce with the patient about the person who has passed in order to establish the link..yet avoid saying, "You remember Mary, right?"
And finally, remember that telling the patient is something you need for YOU. The patient is a member of the family who you need for moral support. You would be amazed at how often even nonverbal patients will stroke your hand or murmur words of comfort so you can grieve. It is a pretty amazing phenomenon. When my husband's uncle died, his wife was living in a nursing home for several years following a brain tumor. My husband didn't want to tell his wife but I insisted. We went to her after her nap and both took her hand. She turned and faced me -- which she had not done in quite a while. I quietly told her that her beloved husband had died and that the funeral had been lovely and well attended. She took my hand and turned away. A week later she peacefully died. I think she knew and was waiting.
Think about it. If it was you who had dementia, wouldn't you want to know if your loved one had passed?
Geri R. Hall is an advanced practice nurse who works in the department of neurology at the University of Iowa College of Medicine and at the Banner Alzheimer Institute in Phoenix, Arizona. She's also a speaker and author who since 1996 has facilitated the online support group for the Washington University, St. Louis, Alzheimer's Disease Research Center's Alzheimer List.