By normal definition, anticipatory grief is the mourning that occurs when a patient or family is expecting death. However, with Alzheimer's disease or dementia, anticipatory grief takes on a new meaning for the caregiver and affected person. Some experts call it "dementia grief."

The impudence of Alzheimer's disease is that the person isn't dead, technically. That person still lives in the house, still eats meals at the table and still looks at the caregiver with glazed eyes.

It is difficult to mourn someone who is still so visible in the caregiver's life. Some caregivers experience feelings of loss that are related to their loved one's memory loss and personality changes through the journey of the disease. They feel like their loved one is already gone.

Caregivers and families members cope with the real feelings of loss — the anticipatory grief — for their loved one who is still alive, and then, they live through an ambiguous loss, that is, interacting with their loved one who is not fully present socially or psychologically. Finally, they grieve again at the physical death of their loved one.

For caregivers, it is perhaps the hardest part of giving care to their loved one, as the caregiver watches the slow, progressive decline from the disease. They often face periods of mourning even as they are still performing the difficult challenges of giving care to the individual with Alzheimer's or dementia. And because of this, caregivers suffer from depression and tend to display symptoms of sadness, lack of hope and guilt — all feelings that are magnified for the caregiver and are associated with stages of grief.

Caregivers who are experiencing anticipatory grief should acknowledge their feelings and understand these emotions are normal. Additionally, caregivers should understand they are going through a grief process that is entirely real, equivalent in intensity and scope to the response of death, and should practice self-care and seek emotional support from friends and family. It is also helpful to concentrate on living in the moment and foster activities that produce enjoyment for the affected person and the caregiver together. These moments generate memories to cherish that can ease the pain of the eventual physical loss of the loved one.

 




Questions about Alzheimer's disease or a related disorder can be sent to Dana Territo, the Memory Whisperer, director of services at Alzheimer's Services of the Capital Area at advice@alzbr.org or visit the organization at 3772 North Blvd., Baton Rouge.