Dementia and anticipatory grief

Recently I was asked to speak on TV about the grief that people feel when they are losing someone to dementia, but that person is still alive.  You can be living with someone who has been diagnosed with dementia for more than a decade.  In relation to dementia, it’s sometimes called “pre-death grief.” 

It is the heartfelt sense of loss that comes when so much of what you planned to do is now not going to happen.  The desolation when the person you have always loved starts to disappear and is replaced by a stranger in their body, who thinks and behaves quite differently. 

The person diagnosed may already be experiencing grief for what they are losing, and this leaves the carer in a position where they are having to manage their own grief, while supporting the grieving person with dementia who needs increasing amounts of care as the time goes on.

In a lecture about why people with dementia have “good days” Professor Kenneth Rockwood talks about how disconcerting it is for families when the person for a brief moment appears again, only to disappear.  It gives nightmare feelings that the loved one is somehow “locked inside” the host body, desperately trying to get out and communicate, only succeeding once in a while.  

You may have resigned yourself to the fact that your father or husband doesn’t know you anymore then suddenly in a moment when he seems completely like his old self, he unexpectedly reaches out to you, using language and endearments that you have learned to live without, and then he slips away leaving you behind again.  The sense of loss is renewed and even more acute than before.  Grieving while exhausted and stressed by caring tasks and adapting to new circumstances is a particular sorrow that is hard to relate to if you have not been through it. 

Anticipatory grief is when time and circumstances allow loved ones to prepare for grief by talking with the person who is dying.  When someone is reaching the end of life with cancer, this might be possible.  In dementia, it is probably quite different.

You can read my full post on the "Dementia and anticipatory grief" by following the link below.

juneandrews.net/blog/21/11/2023/dementia-and-anticipatory-grief