What is an end-of-life doula?
An end-of-life doula is a professional who can assist someone prepare for their death and reflect on their life, their greatest joys and regrets, any fears or worries on their mind and how they want to be remembered.
The doula can be an essential part of end-of-life support for those individuals who have Alzheimer’s or other dementias. The doula’s nonmedical holistic approach encompasses emotional, spiritual and physical support to everyone involved, assisting both the affected individual and the family caregiver.
End-of-life doulas, sometimes referred to as “death doulas,” “death midwives,” “death coaches” or “end-of-life coaches,” offer their empathetic but neutral, calm and levelheaded presence to guide the individual and family through some of the end-of-life preparations that may get too overwhelming to facilitate alone. A death doula will listen to the affected individual’s feelings, fears and wishes, and talk with them about how to envision their ideal way of passing.
However, the process needs to be adapted depending on the condition and state of the person with Alzheimer’s disease or other dementias. As communication and reasoning skills fade, individuals with dementia rely more and more on body language, facial expression and voice tone and inflection to comprehend caregivers’ meaning. The doula would then pay more attention to those subtle, nonverbal signs of communication and act upon them.
According to the International End-of-Life Doula Association, legacy work can be incorporated into the doula’s service with dementia. The purpose is to honor the person, not the disease that changed the loved one. The end-of-life doula might approach legacy work in a more family-centered way than they usually would when working with someone who has dementia. Even if the individual is only able to look at, listen to or feel the legacy project process can be rewarding for all individuals involved. For instance, a collaborative playlist of the individual’s favorite music or songs could activate memories and emotions for both the affected individual and the caregiver.
Doulas do not take the place of hospice care services; instead, they complement other services that a dying person and their family may be receiving, including hospice or palliative care. The cost of end-of-life doula services can range from $25 to $100 an hour, and these services are not covered by any major insurance plans. However, many doulas offer payment plans and/or affordable sliding-scales rates based on financial need.
“Towards the end-of-life, when supporting those with cognitive impairment, whether from age-related memory decline or Alzheimer’s disease, it’s vital to be especially patient and attentive,” says Leslie-Alin Tewes, a life care consultant specializing in aging and an end-of-life doula. “Giving of unhurried time and unfrazzled attention is the point of this work. It is the gift.” (quoted in an article on the International End-of-Life Doula Association website).
For more information on end-of-life doulas, go to www.inelda.org.