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

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.

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Cindy Harris

Is there formal training to be a death doula or a dementia doula? If yes, where and who to contact? Thanks!
BK Books replied:
Hi Cindy, yes, there are many End of Life Doula training programs. Use our friend Google to find courses. Also check NEDA (National End of Life Doula Alliance). After you find courses that interest you, make contact and interview several. Not all courses are alike so you need to interview many to find what suits your personality and goals. With Zoom so readily available the course does not have to be local and does not take away from its value. Blessings to you. Barbara

Charlie High

As an EOL Doula and hospice volunteer, I can really appreciate this article! My dementia clients are my constant reminders that all we really have is the present moment. One of my clients told me that the one thing that they can’t take away from you is your memories when, sadly, dementia was robbing him of his memories. Although his family is frequently frustrated with telling him, “Remember, we just told you that” (he really doesn’t) I treat him as if his repetitive stories and inquiries are brand new. You’re right. The need for “dementia doulas” is great.
BK Books replied:
Hi Charlie, family caregivers have unique challenges in caring for a person with dementia. Yes, they need support and a dementia doula would be one way of taking care of the caregiver. Blessings! Barbara

Janet Miller

This is SUCH an excellent idea! My mother, who was always a difficult person anyway, was deep in dementia, and she wouldn’t stand for anyone else except my father (and maybe my brother) to be with her. (I lived in another part of the country). My sweet father passed away, and his last words were “I can’t do this any more”. I know he was speaking about trying to take care of her. It was so sad, and there’s nothing to say that she would have accepted anyone else’s help, but it would have been a Godsend for dad to be able to get away. LOVE this idea!!!

Kristi Burnett

I find the idea of a dementia doula very fascinating. I feel like I’ve been a counselor for my friends on how to deal with dementia and dying since my mother passed from Alzheimer’s. I was her only child and only close relative, and I had promised her that I would never put her in a nursing home. I spent almost 24/7 with her for three years at great cost to myself and my family. It is not for the faint of heart and I think the idea of a dementia doula is much needed for people who are in the situation I endured.

My best wishes and thoughts are with those who are struggling with this.
BK Books replied:
Kristi, thank you for your comments. Caring for someone with dementia is a 24/7 commitment. Support for the caregiver is as necessary as care for the person. Blessings to you for the gift you gave your mother. Barbara

Katherine Hlavac

I find this fascinating. I am interested in a Dementia Doula program. I am a private caregiver. I have worked with numerous dementia clients and support the process of dementia education and guidance. I am eager to learn more.
BK Books replied:
Hi Katherine, at this moment there are no courses (that I am aware of) that are specifically geared to dementia doulas. It is Mary Anne Oglesby-Sutherly’s desire to start one. There are many End of LIfe Doula programs. You might start there for your baseline education and then “branch out” to being a Dementia Doula. Blessings to you. Barbara

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