How Doulas Help Caregivers Navigate Dementia

Throughout the unpredictable course of dementia, doulas provide compassionate support beyond just end-of-life-care choices

Paul Wynn,

AARP

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Published January 14, 2026

people and a dog visiting at a dementia doula

Kim Burgess (center), a doula specializing in dementia care, spends meaningful time with Nancy Dumbroski (left), and her son, Todd Dumbroski.

Whitney Curtis

When the first signs of memory loss appeared, the Dumbroski brothers — Todd, Mike and David — faced a familiar dilemma: how to honor their mother’s wish to remain in her longtime community of O’Fallon, Illinois. With the brothers scattered across the country in Chicago, Los Angeles and Portland, Maine, they turned to doula Kim Burgess to be the family’s “eyes and ears” between visits.

Burgess provides regular updates, including photos and candid observations, to help the brothers understand how their mother, Nancy, is doing at the memory care unit. Beyond monitoring care, Burgess provides companionship, taking Nancy to concerts, ice cream outings and familiar activities that make her happy.

Unfamiliar with the realities of dementia, the brothers rely on Burgess to explain which changes are typical, what to expect next and how to make decisions together. Her background as a nurse practitioner proves especially valuable during medical appointments, where she can communicate clearly with clinicians and relay critical details back to the family.

The connection is also deeply personal. Years before, Burgess and Nancy had worked at the same hospital, and Nancy remembered Burgess from that experience. “When we realized Kim and Mom had known each other, it felt like it was meant to be, and it reinforced that we made the right choice,” says Mike Dumbroski.

For families considering a doula, the Dumbroskis say, the greatest benefit is peace of mind. Knowing someone knowledgeable, trusted and compassionate is there helps them feel confident that their mother is not only safe but well taken care of.

“Unlike rotating staff, a doula is a steady presence who knows the person’s history, personal references and rhythms, especially as dementia or serious illness progresses,” Burgess says.

Burgess provides steady companionship and support to Nancy while providing regular updates to her three sons between their visits.

Whitney Curtis

What is a doula’s role?

While doulas are primarily known for assisting with childbirth, they also support individuals and families through chronic illnesses like dementia and end-of-life transitions. Unlike traditional hospice providers or geriatric care managers, doulas focus on the educational, emotional and practical aspects of care rather than medical treatment. Because there are no consistent licensing or educational requirements, the training and scope of practice for doulas varies widely.

Many doulas come to this work after careers in nursing, social work or other health care professions and may offer skills beyond the core, nonmedical doula role. Others focus more narrowly on companionship, advocacy and emotional support. Hourly rates for doulas can vary from $30 to $200, depending on their experience, location and level of required care. Given this variability, families need to meet with doulas to clearly understand the services they provide and ensure their experience and approach align with the family’s specific needs and expectations.

“Regardless of their specialty, whether it be birth, death, hospice, dementia or otherwise, doulas strive to understand the unique nuances of each individual’s experience,” says Omni Kitts Ferrara, director of education at the International End-of-Life Doula Association.

Doulas sometimes work alongside hospice providers to enhance support for individuals and families while the hospice program remains responsible for medical oversight, advance directives and symptom management. Some hospice programs hire doulas, who then shadow hospice staff and provide their services, which are billed through the hospice program.

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“This integration allows families to benefit from the doula’s personalized attention while staying aligned with the hospice care plan,” Ferrara says.

Becky Churney’s path to becoming a doula began in education and nursing, where she grew increasingly frustrated with the impersonal nature of modern health care and the quiet loss of “care” within it.

Her perspective shifted profoundly during the COVID-19 pandemic, when her aunt suffered a stroke. Because of hospital restrictions, Churney was the only family member able to be present. Her family entrusted her with the role of advocate and interpreter, relying on her ability to translate complex medical jargon into clear, understandable language so everyone could make informed decisions together. She spent weeks at her aunt’s bedside, advocating for her care and witnessing firsthand the gaps in care and support.

The experience became a turning point, inspiring Churney to explore the field of doula work. She trained with the Doulagivers Institute and continues training to stay current with best practices and address the diverse needs of individuals and families.

Churney now runs her own doula practice in Maine, often combining older adult care, advocacy and end-of-life support. She works closely with families, tailoring her approach to each person’s cognitive abilities and communication needs.

“Even when memory fades, the person remains,” says Churney. “It’s our job as doulas to see them, honor them and walk alongside them with care and dignity.”

Nancy and Todd Dumbroski work on a puzzle together at a memory care unit in O’Fallon, Illinois.

Whitney Curtis

How doulas support families through dementia stages

Families often turn to doulas for guidance in understanding the changes caused by the disease versus those signaling the body’s natural dying process. By explaining how dementia affects the brain alongside the physical shutdown near death, doulas help reduce fear, blame and confusion. They provide education on disease progression and teach families to interpret new ways their loved ones express their needs, helping them differentiate between neurological changes and end-of-life changes.

Julie Derby Jaecksch, a doula in Martinez, California, supports David Hammon by easing both the practical and emotional burdens of caring for his wife, Sherrie, who is living with Alzheimer’s. She helps David meet Sherrie where she is, focusing on what she can still enjoy and understand rather than what she has lost.

Jaecksch provides companionship, encourages gentle physical activity and supports meaningful moments such as conversation, walking and reminiscence. Jaecksch also works directly with Sherrie on legacy activities to help preserve her personal memories, milestones and beliefs through memory books, photo albums and even video recordings.

Equally important, Jaecksch supports David as the primary caregiver. She provides education about Alzheimer’s-related changes and medical red flags, such as recognizing signs of infection when Sherrie cannot verbalize symptoms and advocates during medical appointments when needed.

“Julie understands our circumstances and follows through. I’ve trusted her in other roles, and knowing she’s looking out for Sherrie, keeping us organized, and making sure plans and appointments are handled gives me real confidence and peace of mind,” David says.

Planning ahead for end-of-life care

When preparing families for end-of-life experiences, doulas can explain what the different stages of the dying process look like, helping the family feel more informed and confident. They listen to life stories, support legacy work and rituals, and provide steady companionship so individuals are not alone, whether care is taking place at home, in a hospital or in a hospice setting. Their role often begins well before the final days, especially with conditions like dementia, where needs evolve gradually and communication changes over time.

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Doulas also assist families with funeral planning as well as the grieving process, which, in the case of dementia, starts long before the advanced stages.

“This clarity is especially important as families grieve ongoing losses long before death occurs, a phenomenon many describe as ‘losing the person before they die,’” says Lori Rizzo, founder of Compassionate Crossings in Eagleville, Pennsylvania.

Doulas support this anticipatory grief, helping families navigate cognitive, emotional and relational changes and respond with understanding rather than reacting to crisis.

Doulas also help families navigate end-of-life realities by guiding them on what to expect and assisting with advance care planning. Some doulas place heavy emphasis on helping families think through wills, trusts, powers of attorney, health care directives and funeral planning. They do not provide legal advice but instead connect them to appropriate attorneys who specialize in eldercare law.

One recommended planning tool is available through the Conversation Project, developed by the Institute for Healthcare Improvement. This free program helps families have early, detailed discussions with loved ones to understand and respect their end-of-life care wishes.

“Doulas can help guide conversations with families about medical care, comfort measures and end-of-life preferences early in the disease course, ensuring these decisions are grounded in the person’s values and beliefs rather than made during a crisis,” says Rizzo.

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.