We Have End of Life Doulas- What about "Dementia Doulas"? by Barbara Karnes, RN

I did a podcast with Mary Anne Oglesby-Sutherly called Aging, Angst & Alleluia’s. Among other things, she is a Dementia Doula. I had not heard of that term before and now that I have, I’m hooked.

Doula is an ancient Greek word meaning a woman who serves. That word has evolved into today’s world slightly altered. 

The Oxford Languages from Wikipedia defines doula as a woman with formal obstetric training, who is employed to provide guidance and support to a pregnancy during labor. From admission through delivery, a doula stays at her assigned patient's side. A woman employed to provide guidance and support to the mother and a newborn baby.

BUT there are now more doulas than just baby birthing doulas. There are End of Life (EOL) Doulas and, as Mary Anne offered, Dementia Doulas. We go through labor to enter this world and we go through labor to leave it. It seems very appropriate if you can have a doula assist with the birthing to enter that we have a doula who will assist us as we leave, as we are birthed into the other world.

Dementia doesn’t play by the end of life, dying rules. It isn’t until the disease progresses to not swallowing, to choking, to not being able to eat that we can actually predict when death will arrive. Yet, for years life as we know it has been slowly ebbing away. So many small deaths occur until the final one arrives. Dementia is a very long labor to leave this world. 

What if there was a doula to support a person during this journey? What if there was a person who was educated in the dynamics of dementia who became a consistent (operative word consistent) friend, a guide, a resource who interacted with the person and the caregiver on a regular basis, who was not family, who did not have the emotional connections to the losses, to the changes? A person who could appreciate the present, focus on the present, and guide all those connected with this special person into living each moment as a gift?

I don’t know how all this will work—money, time, places, teaching, qualifications. I do know the need is very much there and from need comes those pioneers who are ready to think outside the box to develop a way.

We did it with birth doulas when birthing became a medical event instead of a natural part of living. We did it with the hospice movement when dying became a medical event and we lost sight of its naturalness. We can do it again when we have been presented with the struggle to care for those living and dying with dementia.

Something More about...  We Have End of Life Doulas- What about "Dementia Doulas"?

It is difficult to know when your loved one with dementia begins the dying process. My booklet, HOW DO I KNOW YOU: Dementia at End of Life helps families recognize the unique signs that indicate the dying process has begun. If you are a caregiver for a person with dementia, you may want to get my guidebook, BY YOUR SIDE, A Guide for Caring for the Dying At Home. It provides information and support to the families who are caring for and making end of life decisions on behalf of someone with dementia.