Dementia Doula

My qualifications as a dementia recreation specialist come from over twenty-six years of care-ing for individuals with dementia. I started as a nurse’s aide in 1972, continued as a volunteer when my children were very young and then had the life-changing transition from professional caregiver to family caregiver of my father-in-law with Alzheimer’s disease. My ability to provide nursing assistance was very useful as a live-in caregiver, but our inability to provide him with better quality of life was devastating. After his death, I took on a job as activities assistant at the Adult Day Care Dad had attended briefly. I learned how to couple my intuitive care instincts with my creativity to provide therapeutic recreation to individuals with a wide range of experience. I became a good activities assistant whose best skill was with individuals with dementia. Coupling my Winter Growth training with certification as an Activities Director led me into LTC and then private consulting and recreation provision.

Although I consider myself a Recreation Therapist, my certification is not of the CTRS variety. That would have called for a second Bachelor’s much later in life. The advantage to being a Certified Activities Director is that my recreation training is elder-focused. The rub is that though I feel very much like a recreation therapist, I’m not officially certified as one. So what to call myself?

My first role as a Memory Unit Birthing partner has given me a new label. I sent off my full recreation recommendations to Weinberg Village, the soon-to-be parents of a memory unit. My joy in preparing it was a great counter-balance to my research as a Doctoral Candidate. As a part of the consulting team, my role was non-medical and centered on therapeutic provision of physical, emotional and individualized choice in, middle and late stages of the disease.

This mirrors Wikipedia’s definition of a doula. Historically a doula is an experienced mother who assists new mothers. The doula title works well with experienced Alzheimer’s caregivers who assist new caregivers. The doula definition works as a member of a team whose goals are very consistent with those of a dementia special care recreation therapist.

The Doulas of North America give a description of the duties of a doula that was easily adapted to include dementia recreation specialists.

A Dementia Doula:

o Recognizes dementia as a life experience that the family will remember after their loved one is gone
o Understands the progression of dementia(s) and the emotional needs
o Assists the individual and their family in preparing for and carrying out their plans for life and death
o Stays by the side of the individual throughout the course of their dementia
o Provides emotional support, physical comfort measures, an objective viewpoint and assistance to traverse the changes brought by the disease
o Facilitates communication between the individual with dementia, their peers, their family and professional caregivers
o Perceives her/his role as one who nurtures and protects the individual with dementia’s memory

The dementia doula recognizes the life in the experience of the individual with dementia. The doula captures what memories, plans, and preferences remain despite the disease’s damage. Side by side and hand in hand, the Dementia Doula brings the insight and energy to the often tumultuous aspects of caregiving. As a non-medical member of the team, she/he offers the multi-sensory therapeutic support that facilitates communication with the entire care team: Individual, family and caregivers. The unique contribution of a recreation provider facilitates the nurturance and protection of the individual’s identity and memory.

Weinberg Village is an assisted living facility whose commitment to care conceived the idea of a specialized memory unit to assist their residents progressing through the middle stages of dementia. Their birthing plan may or may not include all of my recreational recommendations, but the invitation to serve as a doula has been an honor and a privilege. I was given the gift of practicing my skills, envisioning the ideal environment for individual quality of life, and translating recreation and dementia care research into practice.

L’Chaim and its experience with dementia.