Introducing the Dementia Doula

If you’re familiar with the word “doula,” you probably think of it as referring to a person who provides guidance and support to a pregnant woman. From admission through delivery, a doula stays at her patient’s side providing comfort and support to the mother, her partner, and the newborn baby.

But there are more doulas than just childbirth doulas. The word “doula” comes from the Greek word meaning “woman who serves,” so it is very easy to see how this term can be applied to many other helping professions.

We have previously written about positive death doulas, also called end-of-life doulas.

Today, we would like to introduce you to the profession of dementia doulas, a relatively new field of expertise that many people have never heard of but that individuals and professionals in the world of Elder Care and Elder Law must learn about.

What Is a Dementia Doula?

A dementia doula is educated in the dynamics of dementia. He or she becomes a consistent friend, guide, and resource who interacts with someone with dementia and their caregivers on a regular basis. Dementia doulas are unique in that they are not family and do not have the emotional connections to the losses and changes a person with dementia experiences like a family caregiver does. They are uniquely able to assist and guide others who are connected with the person with dementia into living in the moment with the person.

Here are some of the support services provided by a dementia doula:

• recognize dementia as a life experience that the family will remember after their loved one is gone;
• understand the progression of dementia(s) and the emotional needs;
• capture what memories, plans, and preferences remain despite the disease’s damage;
• assist the individual and their family in preparing for and carrying out their plans for life and death;
• work with the individual throughout the course of their dementia;
• provide emotional support, physical comfort measures, an objective viewpoint, and assistance to traverse the changes brought by the disease;
• offer the multisensory therapeutic support that facilitates communication with the entire care team;
• facilitate communication between the individual with dementia, peers, family, and professional caregivers;
• perceive her/his role as one who nurtures and protects the individual with dementia’s memory.

The dementia doula brings insight and energy to the challenging and often tumultuous aspects of caregiving for a person with dementia. As a non-medical member of the caregiving team, the unique contribution of the dementia doula helps facilitate, nurture, and protect the individual’s identity and memory.

What a Dementia Doula Experiences

According to Martha Heymann, an end-of-life doula who works with dementia clients and their families, while support will sometimes look different for end-of-life doulas working with dementia clients, the doula’s ability to be present for that individual is essential. “Meet them where they are,” says Martha. “Be ready for ebbs and flows from present to past during a single conversation. Have your sea legs. Know you cannot correct the course, but you can stay steady, and that your calm can float on the breeze to your client and their support circle.” When working with a client with dementia, Martha describes how the doula may deeply support the family and caregivers and how the process can be rewarding for all individuals involved.

Tips from Dementia Doulas on Caring for Someone with Dementia

According to Dementia Doulas International, more than one caregiver is vital for those who require round-the-clock supervision. Family members, friends, health care workers, and dementia doulas work together as a team. This typically includes quality training and awareness so loved ones can get the appropriate care they require.

Doulas, as well as others, need as much information as possible to do this job effectively. Here’s what dementia doulas have found help them with their work. You can also use these tips if you are a caregiver for a loved one with dementia.

• Verbal communication: For someone with dementia to hear what you’re saying and process the information can sometimes take well over a full minute. Dementia doulas know to expect and be comfortable with silent moments. This added awareness of what’s happening after they speak to a person with dementia is another reason why they must practice patience with all their clients.
• Nonverbal communication: Body language, facial expressions, and tone of voice are important. They help convey messages. Conveying calm reassurance when communicating, both verbally and non-verbally, helps all clients feel less stress.
• Walk with them and understand: Don’t argue with someone who is experiencing a different reality. Rather, try to understand it. Living with that confusion and fear is hard enough. They certainly don’t need family or caregivers telling them “you’re not going to work because you retired 10 years ago,” or telling them that a loved one is not returning because they have died. Challenging “the reality” of a client with dementia can cause agitation and confusion for the person with dementia and can build resentment and frustration in the caregiver. All of this is completely unnecessary. Family and caregivers should simply go with the flow and understand that the person with dementia may be essentially living two different lives at the same time. This is often because most people with dementia sleep for much of the day, often sleeping for more hours than they are awake; while sleeping, they may of course dream about events that took place in their past, or they may dream about certain loved ones or others visiting them. For family members, these dream memories may seem like the person with dementia is living in the past or even hallucinating. But for someone with dementia, the line between “real life” and “dream life” can become very blurred, so don’t challenge the “reality” of a person with dementia because their reality may be part of their dream life, which may seem completely real to them.
• Environment must be safe and comfortable: Part of a dementia doula’s job is to help facilitate a peaceful life for the person with dementia. Surroundings matter. That means the room or area must be safe and comfortable. A cluttered, overstuffed room with hazards can contribute to agitation or confusion for someone with dementia.
• Establishing a routine early on is important. Forming new memories and new routines will be more challenging as time goes on. Try and cue before you do something new. For example, you can say, “In five minutes, we’re going to clean up and get ready to leave.” This allows a client with memory loss to prepare for a change even if they no longer have a concept of time.
• Organizing strategies actually make life more manageable for people who are losing the ability to remember where they last put something. Creating a strategy for where things belong, using labels or other ways to aid memory, will prevent unneeded confusion.
• Focus on what they can do: Many activities can be adjusted for someone with dementia. Such activities can even be slightly challenging in the beginning and then modified as the disease progresses. Always focus on what the person with dementia can do, rather than what they can’t.
• Physical activity: No matter the person’s age or medical condition, staying physically fit is vital. It makes everything easier. Of course, the specifics will depend on a person’s age and abilities. Moving in some way every day helps people with dementia stay healthy and may even help slow down brain deterioration.
• Nutrition and hydration: Eating healthy foods and drinking plenty of water are also important routines no matter our age. Dementia eventually makes eating difficult. Prepare small snacks and finger foods to encourage easy eating.
• Caregiver stress relief: Caregivers need effective support from doulas and the whole team just as much as a patient with dementia. Caregivers feel stressed out and often don’t want to talk about what they need. Dementia doulas help them understand that they cannot effectively care for others if they aren’t caring for themselves first.

A dementia doula can be essential for those suffering from Alzheimer’s and other forms of dementia, providing emotional, spiritual, and physical support to everyone involved, assisting both persons with dementia and their caregivers. Looking for a dementia doula? Dementia Doulas International has a search function on its website here.

Make Sure Your End-of-Life Plans Are Included in an Advance Medical Directive

Want to incorporate a dementia doula or end-of-life doula into plans should you or a loved one develop dementia? Be sure that your wishes are spelled out and available for your loved ones in our proprietary 4 Needs Advance Medical Directive®, which includes our proprietary Long-term Care Directive® along with a Dementia Directive. If you have not done Long-Term Care Planning, Incapacity Planning, or Estate Planning (or if your Planning documents are more than five years old), call us here at the Farr Law Firm to make an appointment for an initial consultation:

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797