Dear Friends,

We are often asked for advice and counsel on the challenging problem of what to do when the well caregiver dies before the person with dementia. In some situations, family members, usually adult children, may be faced with their own overwhelming grief over the loss of a parent, while having to immediately arrange alternate care to ensure that the parent with dementia is safe and well-cared for. This often means stepping in to provide handson care themselves and confronting the dilemma of how to tell the person with dementia, in a sensitive and supportive way, that the spouse has died.

There is no one correct way to answer this question, but there are guidelines. Since each situation is unique, we recommend that, if you are facing this issue, you contact one of our professional care consultants to discuss alternatives.

The first guideline is to carefully consider where the person with dementia (PWD) is in the course of the disease. How much can he or she understand? In the early stage of the disease, a PWD is likely to have traditional responses to grief, but also may need reminding that the spouse has died. A family member should be prepared to deal with reactions including shock, disbelief, and profound sadness. Tears are likely to be shed. Depending on the PWD’s preserved strengths, physical condition and available family support, the bereaved early stage PWD can participate in the funeral, burial, and other memorial events.

If a PWD is in the middle stages, and has more difficulty remembering recent events and exhibiting more behavioral and functional symptoms of the disease, it is more challenging to tell her about the death of a spouse or caregiver. She most likely will forget what she has been told, and might repeatedly ask,“Where’s Dad?” The family should be prepared to gently repeat the information, each time as if it were the first. This can be excruciatingly painful for the adult children who may re-live the experience with each telling. At some point, it may be counterproductive to repeatedly remind the PWD about the death of her spouse. In that case, it may be better to say,“You are thinking a lot about Dad today,” and engage in reminiscence about the person. In addition, “external” cues may be useful. One family kept a program from the funeral service, as a physical reminder that the person is dead. One family laminated a photo of their deceased father, so their mother literally had something to hold on to. She would tenderly kiss the photo and it was helpful for her—and her children— in dealing with her grief.

Some families decide that attending the funeral or burial service would be too much for the PWD, especially if she is physically frail, or does not do well in crowds or in unfamiliar situations. In that case, I recommend that the family speak to the clergy and request that a shorter, simpler version of the memorial service be held in the home. Maintaining religious and spiritual practices are an important way of coping with loss, and may be very comforting to the PWD. If the family decides to take the PWD to a service, I suggest that several family members assist the PWD and, most important, have a “Plan B”—an escape plan—if the PWD becomes confused or upset during the service.

Some families believe that they should not tell the PWD about a death. I believe that even well into the disease, the affected person still has excellent antennae for emotional signals. He or she will pick up on the changed mood of the home,will know that something is wrong, and may ask over and over again for the whereabouts of the deceased spouse. I believe that even though PWD’s have a significant cognitive impairment, they have a right to know about the loss of a loved spouse. But discussing the information has to be done in a way that is consistent with the cognitive level of the PWD. Only if someone is in the very late stages of dementia, and is virtually unresponsive, should you consider not disclosing the death.

These are complicated and painful issues to deal with and, since each situation is uniquely personal, I can only touch upon the guidelines. If you are faced with this, or any other difficult situation, call 1-800-272-3900 and speak to someone on our 24-hour Helpline. You can also make an appointment to speak with one of our Care Consultants to discuss this or any other issue related to dementia care.

— Jed Levine
Executive Vice President,
Director of Programs & Services

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