An Exploration of the Training Needs for End-of-Life Doulas in Alzheimer's Disease and Related Dementias

The end-of-life doula movement originated from the birth doula movement during the 21st century to serve as companions, mentors, and advocates for the dying. The end-of-life doula role is relatively new, and there are no standardized practices for overseeing training programs. This project sought to describe the experience of trained end-of-life doulas working with persons living with dementia and to identify the educational need to improve dementia training. This project used a qualitative descriptive design. Eight doulas were recruited through a purposive sampling method and completed in-depth interviews. These interviews were then analyzed in two cycles of coding: descriptive and pattern coding. Five themes were identified: three describing doula experiences (working with people living with dementia, impact on families, techniques for working with people living with dementia) and two describing educational needs relating to ADRD (doula attributes, what should be taught to doulas). Participants described the experience of working with people living with dementia as unique when compared to other disease processes. They emphasized the lack of and need for training in caring for persons living with dementia at end-of-life. Results were mapped to the principles of adult learning theory, and recommendations were made for future efforts to improve dementia training for end-of-life doulas.

1 An Exploration of the Training Needs for End-of-Life Doulas in Alzheimer’s Disease and Related Dementias By Katelyn Rager A non-thesis project submitted to the faculty of the University of Utah in partial fulfillment of the requirements for the degree of Masters of Science In Gerontology College of Nursing The University of Utah April 2025 Supervisory Committee: Jacqueline Eaton, PhD, Chair Kara Dassel, Ph.D., FGSA, FAGHE Lynn Reinke, PhD, ANP-BC, FAAN, FPCN, ATSF Amber Thompson, PhD 2 Abstract The end-of-life doula movement originated from the birth doula movement during the 21st century to serve as companions, mentors, and advocates for the dying. The end-of-life doula role is relatively new, and there are no standardized practices for overseeing training programs. This project sought to describe the experience of trained end-of-life doulas working with persons living with dementia and to identify the educational need to improve dementia training. This project used a qualitative descriptive design. Eight doulas were recruited through a purposive sampling method and completed in-depth interviews. These interviews were then analyzed in two cycles of coding: descriptive and pattern coding. Five themes were identified: three describing doula experiences (working with people living with dementia, impact on families, techniques for working with people living with dementia) and two describing educational needs relating to ADRD (doula attributes, what should be taught to doulas). Participants described the experience of working with people living with dementia as unique when compared to other disease processes. They emphasized the lack of and need for training in caring for persons living with dementia at end-of-life. Results were mapped to the principles of adult learning theory, and recommendations were made for future efforts to improve dementia training for end-of-life doulas. 3 Background The role of the doula dates back to biblical times; it was modernized with the birthing doula movement in the mid-1970s; later in the 21st century, it brought about emerging doula roles and titles such as comfort doula, delirium doula, hospice doula, end-of-life doula, death doula, and palliative care doula (Lentz, 2023). End-of-life doulas are non-medical practitioners who serve to support families emotionally, physically, and spiritually from diagnosis of terminal illness to after death (Yoong et al., 2022). Over 100 years ago, death commonly took place in a home surrounded by friends and family providing care for their dying loved one. In modern-day society, with the emergence of medical technology, the incidence of death has shifted to institutions with the primary goal of aligning care with patient preferences to improve quality of life and reduce undesirable symptoms (Ghandourh, 2016). The goal of end-of-life doulas is to provide education surrounding death and dying, support families and patients through the dying process, and help guide end-of-life, funeral planning and navigating legal paperwork (Yoong et al., 2022). In this profession, there is often confusion regarding doula titles and roles. The terms death doula and end-of-life doula are the most common. However, other titles have been used as there is no standard for professional titles. The term end-of-life doula has become a more common title in recent years as it encompasses various services and improves clarity about the role (Krawczyk & Rush, 2020). Doulas may go by the same titles but offer different services, or they may go by different titles and offer the same services, which can cause some confusion about the role from a community and professional view. Existing research surrounding end-oflife doulas is minimal and focuses on exploratory and descriptive research methods. Most of this research focuses on how the doula movement started, end-of-life doulas' roles, and how doulas view their roles (Yoong et al., 2022). According to Rawlings et al. (2020), 1) doulas work with 4 individuals at the end-of-life, 2) doulas work in a variety of settings (hospice, private business, and hospitals) and multiple roles (death care, bereavement care, end-of-life planning, holistic therapies) leading to some confusion surrounding their role within the healthcare system, and 3) there is no or standardization surrounding end-of-life doula education and practice. Doulas may take on clients throughout a disease process, meaning upon diagnosis or at any point of the disease prognosis until death (Dellinger et al., 2024). The earlier a doula takes on a client, the more work they can do in processing and preparing for end-of-life. When doulas start working with a client early in the disease process, it allows enough time to work through complex end-of-life issues. The reality is that most families seek end-of-life care and support later in the disease process when it is often too late, or death is imminent (Dellinger Page, 2024). There are no formal standardized practices for end-of-life doulas, so there is no identified time frame for when doulas start working with clients. However, their services are available for those needing companionship and support resources before, during, and after death (Krawczyk & Rush, 2020). Doulas describe themselves as companions, mentors, and advocates for the dying, and they help fill social gaps in end-of-life care, with time being the most significant factor (Rawlings et al., 2020). Since there are no regulations or standards for end-of-life doulas, client feedback and reviews are sparse, and there is no data to describe satisfaction with end-of-life doula services (Rawlings et al., 2022). There is limited research conducted on the experience of working with an end-of-life doula, making the benefits and drawbacks unclear (Rawlings et al., 2023). One study indicated positive reviews of using end-of-life doulas (Rawlings et al., 2023), however, several barriers are still seen in the role. Barriers may include hostility from other medical professions, the cost of services, and finding a doula (Yoong et al., 2022). 5 An end-of-life doula is a growing field not widely accepted in medicine. Most doulas are referred or find clients by word of mouth, past clients, or professional contacts (Rawlings et al., 2022). Additionally, individuals can find local doulas through professional directories such as the International End-of-Life Doula Association (INELDA) (International End-of-Life Doulas Association, 2023), Doulagivers (Doulagivers Institute, 2025), or the National End-of-Life Doula Alliance (NEDA) (National End-of-Life Doula Alliance, 2024). Those who become end-of-life doulas often choose this line of work because they state it feels like a calling (Garces-Foley, 2022). End-of-life doulas are commonly women in their mid50s with a nursing background (Lentz, 2023). There are three common motivations found for individuals pursuing this career, including 1) a personal experience that triggered an 'ah ha' moment, 2) a desire to teach others about death and dying, and 3) a desire to provide a sense of comfort and support in talking about death and dying (Hahn & Ogle, 2022). Few training programs have eligibility requirements for students to enter their programs, and once an individual completes their training program, they are typically cleared to start practicing independently (Rawlings et al., 2022). End-of-life doula training programs are not regulated, and there are currently no educational standards for the material being taught in these programs. The end-of-life doula role is an evolving field currently poorly understood due to the wide variety of what is offered through training programs (Rawlings et al., 2023). Current training programs have been in operation for months to decades, and those who teach these programs come from many different disciplinary backgrounds (Rawlings et al., 2022). Across the United States, these programs vary widely regarding training provided, program length, and attendance cost (Garces-Foley, 2022). Since no single agency oversees these training programs, it is not easy to clarify how many exist. 6 Doula training programs may also be self-paced, meaning no set number of educational hours is required for completion. After an in-depth review of current doula programs, many had no pedagogical frameworks or a standard curriculum, and content focused more on personal knowledge with some evidence-based information (Rawlings et al., 2022). Additionally, it was noted that training was broad and covered many topics on a fundamental level while not providing specialized training (Rawlings et al., 2022). Training programs do not have a curricular review board to oversee and approve the knowledge being taught or required credentials for the individuals teaching these programs. From reviews of end-of-life doula training programs, program owners have their own unique views on the topics that should be taught. Training curriculum evolves from owner preferences and what they feel is lacking in end-of-life care. (Rawlings et al., 2022). Once training is complete, no regulating or accrediting bodies oversee and monitor doulas before they are allowed to practice independently (Yoong et al., 2022). Due to a lack of core competencies in training programs, doulas may need more than one program to obtain the full spectrum of endof-life care knowledge. (Rawlings et al., 2022). End-of-life doula training programs commonly cover the following material: funeral/funeral options, advocacy, normalizing death and dying, legacy work, companionship, sitting vigil, overnight respite, having a presence between the death and the funeral, holistic therapist, family mediation, and death cafes (Rawlings et al., 2021). Programs vary in training topics, with some providing more in-depth education than others. End-of-life doula programs may be taught in person, virtually, or a combination. Programs offer certification once a participant has completed the course curriculum (Rawlings et al., 2022). There is considerable debate in the doula community surrounding medicalization and 7 standardization of the role, as standardization may lead to restrictions on the types of activities doulas can perform (Rawlings et al., 2023). There may be a significant gap in end-of-life doula training programs regarding training in Alzheimer’s disease and related dementias (ADRD). Alzheimer’s disease is the fifth leading cause of death in the United States, and it currently affects seven million Americans (2024 Alzheimer's Disease Facts and Figures, 2024). In 2021, 119,400 deaths were related to Alzheimer’s disease, whereas approximately 279,700 deaths per year were related to dementia (2024 Alzheimer's Disease Facts and Figures, 2024). Many barriers exist that prevent quality end-of-life care for people living with dementia. These barriers include the misconception that dementia is not a terminal diagnosis, healthcare professionals who do not have specialized training in dementia, patients and caregivers not completing advanced directives in earlier stages of the disease, and cultural and social beliefs about death and dying (Elliot et al., 2021). Caring for individuals with dementia at the end -of life presents many unique challenges when compared with other end-of-life experiences. Caregivers who care for someone living in the later stages often deal with challenging emotions and behaviors associated with dementia, a lack of knowledge and adequate information related to disease progression and caregiving skills, and face the challenges of maintaining well-being (McDarby et al., 2023). Working with patients with dementia is unique as it is a disease that requires an individualized approach. As the disease progresses, symptoms and behaviors change. Caregivers reported that when caring for those with dementia, their needs shift from needing help with psychological and behavioral symptoms in the early stages to struggling with functional limitations like loss of mobility and communication in the later stages (McDarby et al., 2023). 8 Individuals living with ADRD encounter a wide variety of symptoms that may not be seen in other disease processes. Caregivers struggle to treat and manage these symptoms on their own as it can be challenging to navigate with little knowledge about the disease and disease trajectory. In individuals living with ADRD, pain, nutrition, behavioral issues, constipation, fatigue, and advanced care planning can be hard to address when communication becomes a barrier as dementia progresses (Rowley & Allan, 2018). The end-of-life doula can help address these needs in conjunction with other individualized services that may be required. For example, pain and common infections can be associated with behavioral issues and functional limitations that can be hard to address as a caregiver (Rowley & Allan, 2018). Since the end-of-life doula role is a non-medical profession, doula legally cannot advise patients on any medications or medical treatments. Care needs such as pain management, constipation, and fatigue are symptoms that may be reduced or relieved with comfort care and support. The end-of-life doula role stands out from healthcare professionals because of the time they can spend with clients and their families. Investing more time allows doulas to understand the complex issues families face. End-of-life doulas can be present as the client's needs require, instead of having time-restricted visits like most hospice nurses and volunteers; doulas can stay as long as the client desires and is within the client’s budget (Garces- Foley, 2022). Working with an end-of-life doula is one opportunity to improve the end-of-life experience for persons living with ADRD and their caregivers. However, due to the lack of research, it is challenging to understand the type of training end-of-life doulas may need to fully support the ADRD population. Adult Learning Theory 9 This project explores the educational needs identified by end-of-life doulas and is guided by adult learning theory (Knowles, 1984). Malcolm Knowles developed adult learning theory (andragogy) to understand the needs of adult learners. This theory includes six principles: 1) SelfConcept, which states that as an adult, we have a need for self-directed learning; 2) Role of Experience, which explains how, as adults, we develop knowledge through experience, and teachers should utilize this information in educational atmospheres as a resource, 3) Readiness to Learn, indicates that as we age, our desire to learn comes from social roles, life situations, and what a person needs to learn. 4) Orientation to Learning: Adults see learning as problem-based and applied rather than memorizing facts. 5) Need to Know/Why explains how adults desire to learn because they have something they need to learn and see how it will benefit them or negatively impact them by not knowing the information, and 6) Intrinsic Motivation describes how adults are motivated to learn new information through internal rather than external factors (Knapke et al., 2024). Adult learning theory has been used to help plan and prepare educational content in other programs, such as physician assistant programs (Lewis & Thompson, 2017), improving knowledge of operating room nurses (Chen & Lian, 2024), process improvement for safety curriculums, (Lee & Kumar, 2023), and learning needs of personal support workers who care for people living with dementia in long-term care (Norris et al., 2024). Problem Statement and Research Aims The purpose of this study is to explore the experience and educational needs of end-of-life doulas caring for persons living with Alzheimer’s disease and related dementias (ADRD). This will be accomplished through the following two aims: 1. Describe the experience of trained end-of-life doulas working with persons living with ADRD. 10 2. Identify the educational needs to improve training in ADRD for end-of-life doulas. Methods This project used a qualitative descriptive design, which helps researchers portray straightforward descriptions of experiences and perceptions (Doyle et al., 2020). In-depth interviews were conducted to better understand the experiences of end-of-life doulas providing care for persons living with ADRD. Oversight and review were sought from the University of Utah Institutional Review Board (IRB). The IRB designated this project as not meeting the criteria for human subject research, as it is a student project exploring the training needs for doulas rather than a systematic investigation to develop and contribute to generalizable knowledge. Sampling and Recruitment This study's target population included end-of-life doulas who completed a doula training program, were currently practicing in the United States, over 18, and English-speaking. Eight doulas were invited to participate in this study. The doulas selected as interviewees were trained through the International End-of-Life Doula Association (INELDA). Exclusion criteria included doulas working outside of the United States, under the age of 18, and non-English speaking. End-of-life doulas were selected using purposive sampling from INELDA's doula directory. A set of 50 recruitment emails were sent to end-of-life doulas by randomly selecting doulas from the alphabetical doula registry. The initial 50 emails yielded eight responses; no additional recruitment emails were necessary. The email invitation sent to each doula briefly explained the study and invited them to learn more (see Appendix A for the email invitation). Those interested in learning more were invited to email or call the primary author to schedule a brief telephone meeting to explain the project, review the informed consent document, and answer any 11 participant questions. After the brief meeting, participants interested in taking part in the interview received a digital cover letter consent form and a five-question demographic survey before the interview. The demographic survey asked for year of birth, state in which they practiced, gender, race, and ethnicity (see Appendix C). Participants were required to complete and return this demographic survey to their comfort level as consent to participate in the interview. Recruitment ended when eight end-of-life doulas completed an interview. All eight participating doulas who completed the interview received a $25 gift card as remuneration. Procedures and Data Collection Those agreeing to participate in the study were invited to schedule an in-depth interview with the primary author. Each interview lasted approximately 29-68 minutes, averaging 46 minutes. Individual interviews were conducted using Zoom and were recorded and transcribed using the Zoom platform with the participant's permission (Zoom Video Communications Inc., 2025); all participants could complete their interviews using Zoom, so backup recording options were unnecessary. Interviews were transcribed, de-identified, and reviewed to ensure transcriptions matched the recorded audio. Each participating doula was asked a series of openended questions (see Appendix B), leaving room for exploration of unplanned related topics to be discussed. Questions began with the doula's experience and personal story of becoming a doula, what led them on this career path, positive aspects, challenges, experiences working with individuals living with dementia, what they learned in their training program, their experience with dementia in general and through INELDA’s end-of-life doula certification program. Data Analysis After eight interviews, the information obtained was analyzed to describe the experience of doulas caring for persons living with ADRD at end-of-life, preparation for the doula role, and 12 identifying the gaps in their ADRD education. Analysis occurred in two cycles of coding. During cycle 1, descriptive coding was used to summarize the main topics within the interview data. In Cycle 2, pattern coding was used to organize descriptive codes into patterns, facilitating the reporting of the central themes communicated in the data (Saldaña, 2021). Recommendations for end-of-life doula training programs were then explored through adult learning theory (Knowles, 1984). Results Demographics Eight end-of-life doulas participated in interviews. Participants reported practicing across eight states (four in the Northeast, one in the West, two in the Midwest, and one in the South of the United States), with five practicing in one individual state and three in two different states. All eight participants were female, white, and non-Hispanic (100%). Participants' ages ranged from 31 to 71 years old, with the average age being 56 years old (SD =13.32). Participants received their training from INELDA within the past one to eight years. The average time practicing as a doula since receiving their training was 2.75 years. Aim 1: Describe the experience of trained end-of-life doulas working with persons living with ADRD. Three main themes represent how participants described their experience working with persons living with dementia. These include 1) what it is like working with people living with dementia, 2) the impact dementia has on families living with dementia, and 3) helpful techniques for working with people living with dementia. Please refer to Table 1 (Appendix D) for a summary of themes, subthemes, and exemplar quotes. Working with People Living with Dementia 13 All eight participants described having experience working with people living with dementia. However, four of these individuals only had direct experience through family members living with dementia. The other four participants described having experience working with persons living with dementia who were non-family related. Experiences ranged from not having any dementia clients in their private doula practice, only working with persons living with dementia during their volunteer hours at private agencies, half of their clients living with some level of dementia, and most of their clients living with Alzheimer's or other dementia. This section will address the following themes: 1) the client being an active participant in their endof-life journey, 2) the doula's opinions of what dementia is like from the client’s perspective, 3) the doula descriptions of working with people living with dementia, and 4) doula’s work in caring for a person living with dementia. An Active Participant in End-of-life. Doulas felt that they allow people to become an active participant in their end-of-life process. One participant spoke about her experience with a client being present for her pre-funeral. They described how she was surrounded by all the people she loved, and how she basically had a “fun-eral” before she died, so she would experience how people would share their love for her." "Fun-erals" are a funeral held before the person dies to celebrate life so the person who is dying can be a part of the experience and say their goodbyes. Other doulas reported the opportunity to be present at the end of a person's life and the amazing stories they wish more people could experience that occur near the end-of-life. From the Client’s Perspective. As an end-of-life doula, several participants reported that working with a person living with dementia was complex. They felt this was due to people living with dementia not being able to be an active participant in their end-of-life, and they did not know that they were dying. Participants described people living with dementia as losing the 14 ability to communicate and, as one doula stated, "live in a different reality” from people who are not living with dementia. One participant noted that dementia is an invisible disease; if they have a healthy body and a diseased brain, it may be a long time until they die. Additionally, complexity was described as occurring when the doula needs to be able to interpret the signs of anger, hunger, and even pain, as some people living with dementia are unable to communicate pain verbally. Describing Person’s Living with Dementia. One person described their experience caring for a person living with dementia that it was “exhausting to care for her,” another participant described “it is challenging because they are adult children. They are…often capable of doing physical things, yet not mentally capable of figuring things out." As dementia progresses, communication and language can disappear, and persons living with dementia are not likely to remember conversations that have been held. Persons living with dementia can display a wide variety of emotions ranging from "very happy, and on the other side, very vulgar and angry.” One participant described how those living with dementia “oftentimes do not have cooccurring diseases, and so their bodies take quite a while to die; you know their physical body, their brain is so diseased, but their body is not.” Doulas Caring for Persons Living with Dementia. As an end-of-life doula, working with a person with dementia is a different experience than working with someone who is more cognizant. One doula noted that people living with dementia are "some of the most lovely people you could ever imagine.” People living with dementia have unique safety needs and have difficulty conveying their needs once they start losing the ability to communicate, described one participant. Interviewees also noted that people living with dementia may eventually lose the ability to reason, making it challenging to work through difficult moments logically. Several 15 doulas indicated that when working with dementia patients, doulas must be flexible, willing to "think outside of the box and be creative," and be able to "model compassion and patience." Working with people living with dementia is hard to predict, and behaviors are unknown. People can display anger, become disoriented, and engage in repetitive behaviors. One reported challenge was trying to adapt concepts from the doula training to apply to someone living with dementia (e.g., vigil planning). Participants described doula tasks as taking a lot of mental energy. Doulas felt that they must learn and understand the disease process and be able to adapt their work to meet the needs of those with dementia. As a person progresses through the disease, they may need to be placed in a facility for safety. This adds a unique angle to doula work, functioning in a location with unique limitations and with the addition of other healthcare providers. Impact on Families Four participants reported having a family member living with dementia, such as a father, step-father, grandmother, and aunt. The remaining participants had experience in working with people living with dementia who were non-family related, as discussed above. The impact on family was described in three ways, as outlined below: 1) ways to help families impacted by dementia, 2) impact of caring for loved ones with dementia, and 3) emotional impact on caregivers. Ways to Help Families Impacted by Dementia. Participants indicated that doulas must interpret and develop problem-solving strategies to meet the needs of the person living with dementia. One participant mentioned that as dementia progresses, "their brain is not interpreting whatever their body sensations are," and the person loses the ability to communicate needs. One participant felt that a doula's responsibility is to help the family interpret and understand what the 16 person might be experiencing, why they might be getting upset, or why they might be obsessing over something, Participants indicated that families who care for people living with dementia often have a lack of knowledge about dementia and the disease process and do not receive education upon diagnosis. One doula indicated that doctors do not spend enough time with families and provide insufficient support and education after diagnosis. An important role for the doula caring for a person living with dementia is to teach families about the disease process and support resources. As participants stated, "there is so little caregiving support provided for people with dementia" for families who are overwhelmed and under-educated. There may be abundant resources, however, they may be difficult to access and navigate with a limited knowledge of the disease. Impact on Caring for Loved Ones with Dementia. Participants stated that the overwhelm of caregiver stress may bring out complex emotions towards the person living with dementia. Participants described caregivers as "feeling very frustrated,” “impatient,” dismissive, and “a little bit condescending," thinking things like "that was my mom,” “why was this told to me?” and “why can't they be normal?” One participant reported that it is as though “they are like three-year-olds.” Participants indicated that caregivers may try to ignore the person’s functional ability, hoping they will behave as they once did. Participants reported that caregiver stress and the complex emotions associated often lead to detachment, as caregivers may turn to this as a coping mechanism. One participant talked about the importance of keeping the feelings of the family involved but also helping them understand different aspects of the disease and that it is not possible or realistic to keep the person living with dementia oriented. 17 Emotional Impact on Caregivers. Doulas reported that the emotional impact placed on family members caring for loved ones with dementia can cause a struggle. One participant reported that a family member was on the verge of tears because her mother was mean to her. Another felt that people living with dementia often lash out at their caregivers the most, as a dementia diagnosis can bring on a wide variety of emotions, such as sadness, denial, and guilt, and some families get mad. Families felt guilty at thinking, "I shouldn't feel relieved that Dad is gone." Doulas talked about how family members often become full-time caregivers for their loved ones, which may create strain as caregivers grieve changes in the relationship. Participants indicated that families may reach a level of denial in which they do not want to confront the diagnosis, often avoiding the terms Alzheimer’s or dementia. Talking about the disease often makes it more real and causes emotional distress. One participant stated that the reality is that doulas need to remind them that mortality is inevitable: "It does not matter if there is a cure tomorrow; that just means it's going to be another day." Techniques for Working with People Living with Dementia While working with persons living with dementia, one participant indicated that important conversations should be started early upon diagnosis, that they should continue revisiting these conversations, and that they should confirm their values and priorities as the person moves through the disease process. Doulas should spend more time engaging with the person and limit situations that may result in an argument. One person pointed out, "Don't argue, don't tell them they're not seeing it, just try to, like, identify with what they're feeling." They felt that stepping into the reality of the person living with dementia may be a helpful tool in 18 achieving the work. Participants indicated two specific techniques that could help: music and collaboration with staff members. Music. One participant stressed how language and music are processed differently by the brain, and when language and communication disappear, music is still accessible if activated. Another indicated that music is a universal language, can connect people of all ages and cultures, and has a way of bringing out a person's personality. It should be a top priority for persons living with dementia. Collaborating With Staff. Working with long-term services and support staff can be difficult. As one participant described, new staff members or those with little or no experience often do not know the techniques appropriate for working with someone living with dementia. Specific staff roles and locations were not indicated, but participants felt that staff members did not have the same level of knowledge as doulas. Participants felt it is important to teach the staff strategies in caring for persons living with dementia, specifically noting those of Teepa Snow (Positive Approach to Care, 2022), an occupational therapist well-known for validation training techniques in working with persons with dementia. One person specifically indicated sharing with staff how to understand and identify with those living with dementia and to engage with them. Aim 2: Identify the educational needs to improve training in ADRD for end-of-life doulas. An analysis of eight interviews resulted in a better understanding of end-of-life doulas' perceptions of educational needs, which may improve training for doulas specific to ADRD. Two main themes were identified: 1) attributes doulas should have while working with people living with dementia, and 2) educational content that should be taught to doulas (see Table 1). Doula Attributes 19 The following section addresses important doula attributes that participants thought were important to have prior to caring for a person living with dementia. Those five themes were 1) patience, 2) flexibility, 3) awareness, 4) being able to stand your ground, and 5) knowing how to provide comfort. Patience. Six out of the eight participants described how patience is key in working with people living with dementia. One doula described it as "a deep well of patience." Doulas working with this population were characterized as needing to slow down, repeat themselves often, and work to avoid getting frustrated. They described actions taking longer, realizing, “I might not get out of here at a decent time." One doula stated it was "like working with children as it is not like you're having to necessarily teach them numbers and the things. It's more, just reintroduction to things." As a doula, this work means not expecting clients to remember you and knowing introductions will need repeating. One participant described working with a person with dementia as follows: In a way she did remember me, in a way she could not remember my name, but she would always start talking about the things that we talked about the last time so it was like, in a way she remembered, in a way she didn’t. Flexibility. Four participants described the importance of flexibility and being able to “think on your feet.” One participant stated, “what worked last week might not work…this week," and dealing with "potentially illogical, nonsensical mood, aggressiveness, and perseverating. Being able to respond appropriately, emotionally like in an emotional tone" was an important skill. When working with a person living with dementia, participants described never knowing how the conversation would go and that topics might change quickly. Sometimes, people must facilitate and carry the conversation and interact creatively. Doulas felt they should 20 be able to find what works for the individual, as what works for one person will not always work for another. Awareness. Three participants noted the importance of awareness. One participant indicated the need "to feel and have awareness of what is happening in that present moment with the person." Doulas need to be "one hundred percent present" and be able and willing to listen. A sense of awareness for the needs of the family members was identified as crucial. One participant indicated that when working with a person with dementia who is dying and in transition, oftentimes, the family needs more emotional support than the person who is dying. One participant described working with a person with dementia and their family during the transition period and noted: I'm not worried about the person in transition at all. I'm still gonna want to give them some calming energy. And I'm still gonna want to hold the space of love. What’s happening around me is the families flipping out and they are the ones that need the more help than the one in transition. Stand Your Ground. One participant described how “you really have to be able to stand in your own and let stuff that they say roll off your back.” One doula emphasized the importance of being able to "stand on your own two feet" or not let what others say and do impact your judgment or performance. Participants emphasized the importance of knowing what is and is not appropriate to say and when it is appropriate to communicate. Having an "awareness of self" and knowing individual capacity specific to personal feelings and attitudes was emphasized as significant in preparing to work with someone living with dementia. One doula spoke of the importance of knowing personal boundaries and reactions: "If you're not aware, or you're having a bad day, or you can't hold your own space, you're gonna react." They felt this to be important 21 as those living with dementia can oftentimes sense the energy and mood of those around them. One doula stated, "It is like an irrational toddler; you never know which way they're gonna go." Provide Comfort. Providing comfort and a calm atmosphere was also expressed as vital to working with people living with dementia. One participant stated, "You have to make them feel safe and comforted" and respond with "kindness and empathy." Being kind, empathetic, and showing care were attributes that participants felt were important to building trust and a positive relationship. Participants recommend connecting to the person directly and checking in rather than speaking only to the caregiver. One participant described how she interacts with her clients: I always talk to the person, and they're looking at their caregiver like, "What am I supposed to say?" if the caregiver gives the response, I'll look at the person who's speaking, and then I'll look back at that person and say, does that sound right to you? Is that reflective of how you are feeling? What Should be Taught to Doulas Participants acknowledged that not enough training was available specific to working with persons with dementia at the end-of-life. They recommended topics they felt were vital for doula education in the future. This section explores these topics and is organized into the following themes: 1) education surrounding dementia, 2) not being a typical doula situation, 3) best practices, and 4) techniques for working with a person living with dementia. Dementia Education. Two participants noted that doula training programs do not talk about dementia enough and described the curricular content as being vague. Several participants mentioned the importance of understanding the disease process, how the brain works, and the progression of death. One doula described that when working with people living with dementia, "there's like pockets of high functioning and then there's pockets of atrocity." This indicates that 22 doulas must understand that people living with dementia have a range of behaviors, and executive functioning can change from day to day. Not a Typical Doula Situation. One participant noted, "This is not going to be a typical doula situation." Several participants described the importance of being able to "walk in their reality" and meet clients where they are and make things relevant. One stated that it would be good to know if there were ways to "access different aspects of making them conscious of where they're at, what's happening and helping." Participants felt that doulas do not know enough about dementia and that they need to learn more about the disease. Specific topics were recommended, such as 1) the dementia umbrella, 2) the four main types of dementia, and 3) best practices for working with persons living with dementia. Two doulas reported that it is not a module in INELDAs doula training and that it should be, while another doula mentioned that it is touched upon in the end-of-life doula program called Doulagivers (Doulagivers Institute, 2025) but not in-depth. One participant indicated that going into this line of work, "you need to do some more of your own advanced training." Best Practices. Doulas spoke of the importance of learning best practices while working with someone with dementia. For example, one participant mentioned the specific use of music, while another stated, "You have to be really diligent about trying all your tools." Two doulas reported the importance of teaching family members about the end-of-life process. They also felt it was important for doulas to understand how to provide family support. One participant noted that "the family even needs the exact same amount of love and support…as the transitioning one," especially near the end stages of the disease. Techniques. Specific techniques described by participants for working with this population included releasing expectations, being flexible, and knowing how to adapt to different 23 situations. Participants indicated that working with people living with dementia can be complex due to short-term memory loss; for this reason, they felt it was important to start early and document everything. Specific techniques such as being agreeable, strategic, creative, and learning to shift conversations were not taught in doula training programs, and participants felt that these skills could go a long way. One participant discussed how music was a good tool in working with people living with dementia, as it can be a helpful calming technique. One participant also stated the importance of showing that "you are a friend and there to help them." One indicated awareness of the validation techniques of Teepa Snow (Positive Appracoh to Care, 2025), with the example, “not confronting the person about what they're experiencing, not like forcing a person to do anything, like talking the person through everything." They felt that techniques such as this are important to teach to everyone who works with someone with dementia. Another participant spoke to the fact that voluntary stopping of eating and drinking (VSED) and medical aid in dying (MAID) are important topics in the states in which they apply but are not taught through INELDA. This participant felt it was vital that doulas know that these may be an option in certain places. Discussion This project aimed to understand the experience end-of-life doulas had in working with people living with ADRD and identifying the educational needs surrounding ADRD in doula training programs. In this project, 50% of doulas had personal experience with dementia through family members diagnosed with ADRD. The other 50% had professional experience working with this population, the majority of which was during volunteer hours in hospice agencies. Only one doula reported experience with ADRD in their doula practice. While this may seem low, most of the participants interviewed had not been working as doulas for more than two years on 24 average. The percentage of individuals living with ADRD residing in care facilities may also play a role in the low number of participants having doula experiences with ADRD (Fagundes et al., 2021). Five main themes were discussed across all eight interviews, including 1) what it is like working with people living with ADRD, 2) the impact ADRD has on families living with the disease, and 3) topics and techniques doulas should learn before working with people living with ADRD, 4) doula attributes, and 5) what should be taught to doulas. Doula work is centered around a client's psychological, emotional, and existential needs through providing solace, advocacy work, resource guidance, companionship, and attending to basic physical care needs to improve the dying and families' end-of-life care experience (Yoong et al., 2022). Participants in this project indicated that working with people living with ADRD is a different experience for doulas. Doulas often do not begin working with individuals until later in their end-of-life trajectory. With this population, late-stage dementia clients are not typically active participants in their end-of-life due to lower levels of executive functioning and loss of effective communication strategies. This aligns with the research literature outlining behavioral symptoms and the challenges associated with care for persons living with ADRD (McDarby,2023). Being successful in working with clients with dementia means that doulas should adopt a personcentered care approach, meet the clients where they are, and be able to adapt doula techniques to their needs (Lee et al., 2022). A recurring theme throughout these interviews was participant language describing persons living with ADRD as “child-like” and “toddler-like.” Several participants used this type of language when characterizing working with people living with ADRD. While this may portray how an individual observes certain behavioral symptoms associated with dementia, it does not 25 appropriately describe the situation (Jongsma & Schweda, 2019). Language such as this may be dehumanizing to the person living with ADRD. In a care setting, consideration of the person's lifespan should be acknowledged as it alters the caregiving experience and the experience of those living with ADRD. While retrogenesis theory describes that the path of cognitive decline may mimic the reversal of developmental abilities in children, doulas should consider the impact this language can have on clients and families (Xie et al., 2023). The physiological and biological state of adults with ADRD is unique from the developmental traits of children (Jongsma & Schweda, 2019). These differences have vast implications for the care required of doulas. As doulas working with people living with ADRD, it is common to collaborate with other nursing staff. A topic that was brought to light is the need for educating nursing staff surrounding those working with Alzheimer’s and dementia. This was an interesting topic as participants confirmed that doulas are not receiving adequate dementia education. The question then becomes at what point is it appropriate for doulas to comment on others’ knowledge and provide dementia education to others. One study explains that while staff gain on-the-job training, the significant turnover rate may make knowledge about specific diseases inconsistent (Beer et al., 2009). Formal education is not the only way to acquire knowledge about working with people living with dementia. On-the-job experience with this population is vital, as several participants in this project confirmed. Education is important, and improving the quality of care for people living with dementia requires the application of education through practice, problem-solving, teamwork, and communication (Beer et al., 2009). In this project, doulas focused many of their descriptions on themes related to working with families impacted by ADRD. Family providing care for those with dementia are at an 26 increased risk of burnout due to life's other demands, such as work and child-rearing (Brodarty & Donlin, 2009). Several participants pointed out that families had a lack of knowledge surrounding ADRD and its progression. Unlike working with other end-of-life processes, family members report the grief of losing their loved one repeatedly as the disease progresses and changes over time. Participants described the complex behaviors and emotions experienced by family caregivers. This made caring for the person living with ADRD more challenging. This aligns with the research literature reporting the challenges and strategies among family care partners of community-dwelling persons with dementia nearing end-of-life (McDarby et al., 2023). Doulas play an important role in assisting families living with ADRD. As one doula reported, towards the end-of-life, the person with ADRD was no longer the one needing most of the support and care. Instead, once the person started transitioning to death, the family needed greater support and care. The focus of an end-of-life doula should remain on the client’s needs first; however, complex factors and the disease process may make this challenging. Doulas serve as a grounding support system for families and help them interpret and understand what is happening to their loved ones (Rawlings et al., 2023). In exploring the educational needs, all eight participants mentioned that ADRD is either not a module in INELDA's training program or very briefly discussed. One participant indicated that approximately one hour of a 33-hour training was dedicated to ADRD. Training programs are broad and cover many topics (Rawlings et al., 2022). One participant indicated that specialty webinars on topics such as dementia may be offered, but a one-hour training would not be enough. It was a common theme among participants that they expressed the desire and need for 27 more dementia training. Participants felt that additional ADRD training would be helpful in their doula practice. Themes and subthemes identified in the results section were matched to adult learning theory based on how well participant responses fit the definitions of each principle (Knowles, 1984). Table 2 (Appendix E) outlines the alignment between project themes and the six principles of adult learning theory. Consideration of this alignment may be helpful in the development and implementation of future ADRD curricula for doulas. Self-Concept (principle 1) was demonstrated in subthemes techniques for working with people living with dementia, and what should be taught to doulas. Doulas want to participate in decisions about the topics and techniques they learn and how to apply them in their work environment. Role of Experience (principle 2) was demonstrated in the subthemes from the client’s perspective, and doulas caring for persons living with dementia. As doulas work with people living with ADRD and understand more from the client’s experience, they gain vital knowledge that can be utilized to teach others. Readiness to Learn (principle 3) was reflected in the subtheme of dementia education. Doulas in this project expressed the desire and need to obtain further dementia education to benefit their future clients. Orientation to Learning (principle 4) was demonstrated through the concepts of patience, flexibility, awareness, and the understanding that this is not a typical doula situation. Doulas adapt to the specific challenges associated with working with people living with dementia and problem-solve to meet the client's needs. Need to Know/Why (principle 5) was reflected in techniques and best practices. Doulas pursue further education to learn new techniques and best practices because they need that information to continue working with clients. Intrinsic Motivation (principle 6) was reflected in three subthemes: active participant in 28 their end-of-life, ways to help families with dementia, and provide comfort. Doulas described doing this work for personal satisfaction and fulfilling individual values. Strengths & Limitations This project had some specific limitations in relation to demographics, including a small sample size that was purposively selected from the first eight doulas that returned consent forms. This project did not represent a large demographic group as all participants interviewed were white non-Hispanic females. Most participants were in similar demographic areas, such as the Northeast and Midwest, and only one was from the West. The doulas who participated in this study were trained through INELDA's training program, and the average time participants had been practicing was 2.75 years. Most of the doulas interviewed for this project had not worked with someone living with dementia in their private practice as a doula. They gained more of their experience working as a volunteer for hospice agencies. However, this is an exploratory project to learn about doulas' experiences. These eight interviews are relevant to the initial exploration and understanding of the doula experience working with persons living with dementia. With these limitations in mind, this project did have several strengths. All eight participants who took part had a variety of practice experiences surrounding the topic of doula work, which resulted in a large pool of in-depth interview data. All participants confirmed that doulas were not receiving training in ADRD and emphasized a strong need for this type of instruction. INELDA partnered with this project to support and recruit participants for the interviews. This project has methodological strengths, including two phases of analysis that included two individuals confirming analysis and an audit trail of all actions performed across project activities. Future Research 29 Future research should attempt to recruit a more diverse sample of participants from various geographic areas representing different minorities and identities. Researchers should also strive to gather data from doulas who have been in practice longer and have served a larger population of people living with ADRD while working as a doula. It is also recommended that training modules specific to Alzheimer’s and dementia be created and implemented into end-oflife doula training programs. Going forward, research should analyze the current curricula of various end-of-life doula training programs and the themes uncovered in this project, including ADRD education for families and best practices for working with people living with ADRD. The themes identified in this project that relate to adult learning theory should be analyzed further to help develop a more in-depth module on Alzheimer’s disease and related dementias for end-of-life doula training programs. The principle of self-concept can be utilized to understand what doulas are interested in learning and what is driving them to learn this information. The concept of role of experience can bring about an opportunity for doulas to help co-write a training module for working with people living with dementia based on their personal experience in the role. Orientation to learning can help develop training topics from a problembased approach to meet the needs of people living with dementia. Using the principles of adult learning theory aligned with doula-reported themes can facilitate and enhance the development of a strong ADRD curriculum for doulas. Conclusion This project involved a small group of end-of-life doulas to examine their experience working with people living with ADRD and identify the educational needs to improve ADRD training in doula training programs. Five major themes emerged from this project. Working with people living with ADRD is complex and involves a lot of patience and flexibility. While caring 30 for people living with dementia, it is also important to also attend to the needs of the caregivers and family. Doula training programs do not provide sufficient information on ADRD-related topics, and doulas desire to learn more about ADRD. 31 References Alzheimer’s Association Report (2024). Alzheimer’s disease facts and figures. 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This work is being conducted as part of a Masters Project for the Gerontology Interdisciplinary Program at the University of Utah. The interview will take approximately 30-60 minutes and will be held virtually on Zoom. If Zoom is not an option a phone interview will be held. All information will be kept confidential and your identity will be anonymous. In return for your participation, you will be offered a twenty-five-dollar gift card. If you are interested in participating or have any questions, please email [e-mail] or call 801-830-8843. Thank you, Katelyn Katelyn Rager MS Student University of Utah College of Nursing Gerontology Interdisciplinary Program [e-mail] 37 Appendix B Using a semi-structured approach to interviews, questions will be used from the following examples. However, some questions may be emergent and developed during data collection. 1. How long have you worked as an end-of-life doula? 2. Do you have any specialties you focus on in your doula practice? 3. How did you learn about end-of-life doulas? 4. What type of training do you have? 5. What is your story of becoming an end-of-life doula? 6. What about being an end-of-life doula is exciting for you? 7. What challenges do you encounter being an end-of-life doula? 8. What is your experience at end-of-life with individuals who have dementia? 9. What is this experience like from the family’s perspective of helping a person with dementia at the end of life? 10. What educational content did you receive during your training to help prepare you to care for an individual with dementia and their families at the end of life? 11. What educational content would be helpful for doulas to know to be prepared for working with someone diagnosed with dementia? 12. What specific skills does a doula need to care for someone with dementia at the end of life? How is this different from other disease process? 13. What additional training have you completed since becoming a certified end-of-life doula to complement and support your role? 14. What else would you like to tell me about your experience as an end-of-life doula working with individuals living with dementia? 38 15. What is unique in caring for a person at end-of-life with ADRD versus other types of disease processes? 39 Appendix C Recruitment: Demographics Survey I have a few questions to help describe those participating in these interviews. Some of these questions are demographic in nature, please feel free to answer only those questions in which you feel comfortable. 1. What year were you born? ________ 2. Where state do you practice in? ________ 3. What is your gender? a. Male b. Female c. Other: ________ 4. Are you of Hispanic, Latino/a, or Spanish origin? a. Yes b. No 5. What is your race? a. American Indian or Alaska Native b. Asian c. Black or African American d. Native Hawaiian or Pacific Islander e. White f. Other: ________ 40 Appendix D Table 1 Results by Theme and Subtheme, with Exemplar Quotes Theme Subtheme Exemplar Quote Aim 1: Describe the experience of trained end-of-life doulas working with persons living with ADRD. Working with people living An active participant in end"So many amazing stories…I’m so honored by every single one of with dementia of-life them…weird stuff happens at the very end, it's very real and it's very glorious…it's amazing…d I wish more people could experience that." From the client’s perspective “You don't really feel pain, you can't really articulate what's going on with you, people who are aphasiac…they can't communicate.” Describing people living with “What's sad is oftentimes they don't have co-occurring diseases, dementia and so their bodies take quite a while to die…their physical body…their brain is so diseased, but their body isn't.” Doulas caring for persons “You know that is a very different experience as a death doula, to living with dementia be staying with somebody…cognizant versus not.” Impact on families Ways to help families “…explaining the disease process to people, which explains why impacted by dementia people are getting upset, why are they obsessing or perseverating on this one thing? What might they be experiencing? What is their sensory and perceptive experience with Alzheimer's?” Impact on caring for loved “… initially, there's a level of…denial of the experience…a lot of ones with dementia families initially…want their loved one to be eating…they want them to be moving around…they don't want to talk about the…the stuff they're experiencing…everybody I've worked with I've noticed the family is in denial.” Emotional impact on “They don't want to talk about the mom's gonna be fine… don't caregivers worry…don't know there could be a cure tomorrow, and this could all be better, and I have to remind people gently and sometimes 41 Theme Subtheme Exemplar Quote firmly…we all die. It doesn't matter if there's a cure tomorrow that just means it's gonna be another day… people don't want to deal with the finality of it." Techniques for working with Music “This is a funny thing about the science of music, and where it people living with dementia resides in the brain. Communication can disappear, language can disappear, memory can disappear…where music is stored in the brain…it's accessible and can come out if activated.” Collaborating with Staff "…When the person looks to be unconscious…getting the staff to understand that…they very well probably can still hear you, so it is still important to go into the room, talk to them as if they were there. If you're doing something like a bed bath…talk them through the steps…still engage with them, and treat them as if they are still like fully there…when the person says that they're seeing something or they're experiencing something…getting the staff to the point…teaching them, don't argue, don't tell them they're not seeing it just try to…identify with what they're feeling." Aim 2: Identify the educational needs to improve training in ADRD for end-of-life doulas. Doula Attributes Patience “In a way, it is like dealing with children, but in a way, it's not…because…it's not like you're having to necessarily teach them numbers and the things it's more…just reintroduction to things” Flexibility “…a person who can go with the flow in a moment…being easygoing, being able to respond appropriately, emotionally…in an emotional tone…100% is calm and collected” Awareness “if you're not aware, or you're having a bad day, or you can't hold your own space in that, you're gonna react.” Stand your ground “…they have to be able to stand…on their own two feet…you never know which way they're gonna go, you don't know if this is gonna be a good conversation, and it turns so quickly… you really have to be able to stand in your own and let stuff that they say roll off your back.” Provide Comfort “Patience A lot of patience…the capacity to be a hundred percent present…to feel and have awareness of what is happening in that 42 Theme What should be taught to doulas Subtheme Dementia education Not a typical doula situation Best practices Techniques Exemplar Quote present moment with the person and responding to it with kindness…sense of deep…connection to the person…if a person with dementia feels connected to you, and feels that you're there with them and for them, they will respond and wait a little bit.” “…there should be a whole module on it…when you get up into the senior years, and…we got…a tsunami of baby boomers coming at us. There is going to be a higher percentage of folks with dementia and Alzheimer's…it should be part of the training and curriculum” “…this is not going to be a typical Doula situation where the dying person is going to be potentially in conversation with you, expressing their wishes… want to start as early in the process as you can and document as much as you can.” “…best practices like things that had worked in the past…facilitating conversation, using music…understand the disease…understand the brain and understand how…there's like pockets of high functioning and then there's pockets of atrocity.” “it's important for people to understand that you get a lot further with just kind of…agreeing with the person and being strategic about…the ways you go about things…you have to be a little creative… if you're trying to convince somebody to take a bed bath that doesn't want to take a bed bath, you gotta be a little bit creative and understanding, and meet that person where they're at.” 43 Appendix E Table 2 Knowle’s Six Principles of Adult Learning Theory Applied to Project Results Knowle’s Six Principles Defined 1. Self-Concept Adults want to be self-directed. 2. Role of Experience As a person matures, they accumulate experience that becomes an increasing resource for learning that teachers use as a resource. As a person matures, their readiness to learn becomes oriented toward the developmental tasks of their social roles and life situations. Adults approach learning with a problem-based approach and real-world application. 3. Readiness to Learn 4. Orientation to Learning Relation to Project by Theme/Subtheme Techniques for working with people living with dementia What should be taught to doulas From the client’s perspective Doulas caring for people living with ADRD Dementia education Patience Flexibility Awareness 5. Need to Know/Why 6. Intrinsic Motivation Adults pursue education because they need to know something. They want to understand what they will do with the information and how it will benefit them. The most potent motivators are internal factors such as satisfaction or selfimprovement. Not a typical doula situation Techniques Best Practices An active participant in end-oflife Ways to help families with dementia Provide comfort