When someone you love has dementia and enters hospice care, you want every decision to support their comfort and dignity. A recent study reveals important findings about common medications used in hospice that deserve your attention. Research from the University of Michigan examined more than 139,000 nursing home residents with Alzheimer’s disease and related dementias who enrolled in hospice between 2014 and 2018. The findings raise crucial questions about when certain medications truly help versus when they might cause harm.
This article serves two critical purposes: it raises awareness about these findings while empowering families, caregivers, end-of-life doulas, and hospice professionals to work together for the best possible care. Understanding these issues helps everyone make informed decisions that honor each person’s journey.
What the Research Shows
The Study’s Key Findings
The University of Michigan researchers analyzed national Medicare data from a rare period when hospices were required to report prescribing information. They studied patients who had not received benzodiazepines or antipsychotics in the six months before entering hospice. What they discovered was significant.
Nearly half (48%) of patients received a new benzodiazepine prescription after hospice enrollment, and 13% received an antipsychotic. Most of these medications were prescribed within the first few days of hospice admission. The average hospice stay was more than 95 days, indicating that most patients were not in the final days or weeks of life when these medications began.
The mortality findings deserve careful attention. Patients who began taking a benzodiazepine after hospice enrollment were 41% more likely to die within six months compared to very similar patients who did not receive these medications. For antipsychotics, the increased mortality risk was 16%. These statistics highlight the need for thoughtful, individualized medication decisions.
Why These Medications Are Used
Benzodiazepines and antipsychotics are prescribed to address challenging symptoms that many people with dementia experience. These symptoms include agitation, anxiety, and delirium. Healthcare providers use these medications hoping to bring comfort and reduce distress.
Dementia presents unique challenges in predicting how the disease will progress. Unlike cancer, where healthcare providers can often estimate prognosis with reasonable accuracy, dementia follows an unpredictable path. This uncertainty creates a significant gap between hospice eligibility (typically a six-month prognosis) and the actual dying process.
Research shows that nearly 1 in 5 patients with dementia will outlive the six-month eligibility window for hospice. Good hospice care can temporarily improve patients through better symptom management, regular monitoring, and comprehensive support. This makes matching medications to each person’s condition and prognosis especially important.
Understanding the Medications
Benzodiazepines include medications such as Ativan (lorazepam) and Valium (diazepam). These medications work by slowing down the central nervous system, which can reduce anxiety and promote calmness. However, they carry well-established risks in older adults.
Common risks include confusion, excessive sedation, increased fall risk, and respiratory depression. These side effects can be particularly problematic for people with dementia, who may already experience cognitive impairment and mobility challenges. Long-term use can lead to dependence and worsening cognitive function.
Antipsychotics include medications such as Haldol (haloperidol) and Zyprexa (olanzapine). The U.S. Food and Drug Administration requires boxed warnings on the packaging of antipsychotics for increased mortality in patients with dementia. These warnings reflect serious concerns about cardiovascular events, stroke, and sudden death.
Additional risks include confusion, sedation, falls, movement disorders, and metabolic disturbances. The mortality warnings apply particularly to long-term use when patients have months to live rather than days or weeks. Understanding these risks helps families and healthcare teams make informed decisions.
The Critical Context: When Are These Medications Appropriate?
Transitioning and Active Dying
The transitioning phase describes the period when a person begins showing clear signs that death is approaching. This process, lasting from hours to days, is marked by shifts in physical and mental awareness. During this phase, individuals may drift between reality and an internal or spiritual state, becoming less responsive.
Clues that someone is transitioning include increased sleeping, changes in breathing patterns, declining responsiveness, decreased interest in food and fluids, and changes in skin color and temperature. The more time spent sleeping and the more frequent these changes become, the closer the person is to active dying.
The active dying phase starts when a person becomes unconscious and typically occurs in the final hours to days of life. This phase is characterized by complete unresponsiveness, very irregular breathing patterns (including what’s called “death rattle“), cooling and mottling of the skin, and minimal to no urine output.
During transitioning and active dying, comfort medications become essential and appropriate. These medications, including benzodiazepines and antipsychotics when needed, provide meaningful relief from distressing symptoms during the natural dying process. The focus shifts entirely to comfort rather than preserving alertness or function.
The Challenge of Prognosis in Dementia
Dementia doesn’t follow predictable patterns like many cancers do. Cancer often progresses in stages with relatively clear timelines, but dementia can remain stable for extended periods before sudden declines occur. This unpredictability makes hospice care particularly challenging.
The Medicare Hospice Benefit requires a six-month prognosis, but this model doesn’t fit dementia well. Dementia is now the most common qualifying condition among hospice enrollees, yet many of these patients are not imminently dying. The disease trajectory varies dramatically from person to person.
Statistics confirm this challenge: approximately 20% of dementia patients live beyond the six-month hospice eligibility window. Some patients stabilize or even improve temporarily with good hospice care. Regular monitoring, symptom management, nutritional support, and family education can all contribute to temporary improvements.
This reality makes prognosis assessment crucial. Hospice teams must regularly evaluate where each patient is in their disease trajectory to ensure treatments match their current needs and expected timeline. What’s appropriate for someone actively dying may not be appropriate for someone with months to live.
Advocacy for Families, Caregivers, and End-of-Life Doulas
Understanding Your Loved One’s Current Status
Start by asking your hospice team specific questions about your loved one’s prognosis and current phase. Essential questions include: “Where is my loved one in their disease progression right now?” “Are they stable, declining gradually, or showing signs of transitioning?” and “How long do you expect they have to live—months, weeks, or days?”
Learning to distinguish between months-to-live versus weeks-to-days scenarios is essential. Someone with months to live may still be eating regular meals, participating in activities they enjoy, and having meaningful conversations. Someone in the transitioning or active dying phase shows dramatically different signs.
Recognizing transitioning and active dying signs empowers you to ask better questions about medication decisions. If your loved one is still alert, eating, and engaging with family, that’s very different from someone who sleeps most of the day and barely responds. The Hospice Journey Handbook: Your Complete Guide Through the Hospice Experience provides detailed information about these phases and what to expect throughout the hospice journey.
Your Right to Question Medication Decisions
Informed consent in hospice care means understanding why medications are recommended, what they will do, what risks they carry, and what alternatives exist. You have the legal right to this information before agreeing to any medication. Hospice care is a partnership, not a one-way directive.
When a healthcare provider recommends benzodiazepines or antipsychotics, ask specific questions: “What symptom are we treating with this medication?” “Is my loved one transitioning or actively dying, or do they have more time?” “What are the specific risks of this medication for someone with dementia?” and “What nonpharmacological alternatives could we try first?”
You have the right to refuse or delay non-essential medications. If your loved one is stable with a prognosis of months, you might choose to try other approaches first before starting medications with significant risks. This is appropriate advocacy, not obstruction of care.
Balancing comfort with alertness and quality time requires honest conversations. Some families prioritize keeping their loved one as alert as possible for meaningful interactions, while others prioritize reducing any signs of distress. Neither choice is wrong, but your values and preferences matter. Understanding Your Rights in Hospice Care: A Guide for Patients and Families offers comprehensive guidance on patient rights and effective advocacy strategies.
Medication Reconciliation: What It Is and Why It Matters
Medication reconciliation is the process of creating and maintaining an accurate list of a patient’s medications to prevent adverse drug events and enhance their overall well-being. This process involves reviewing all current medications to ensure each one serves a clear purpose aligned with the patient’s current condition and goals of care.
Medication reconciliation should occur at specific points: upon hospice admission, before every recertification (typically at 90-day and 60-day intervals), at any significant change of condition, when transitioning begins, and when active dying starts. Each of these moments represents an opportunity to reassess whether current medications still make sense.
You can request a medication review at any time. Simply ask your hospice nurse or social worker: “I’d like to schedule a medication reconciliation to review all of my loved one’s medications.” This is a standard practice in quality hospice care.
During the process, expect the healthcare team to review every medication, explain its purpose, discuss whether each medication is still appropriate given the current prognosis, and identify any medications that could be reduced or stopped. This review can prevent polypharmacy (taking too many medications) and reduce the risk of adverse drug events.
Nonpharmacological Alternatives to Consider
Validation therapy and compassionate communication can significantly reduce agitation and anxiety without medications. This approach involves entering the person’s reality rather than correcting them, acknowledging their feelings, and responding with empathy. For example, if someone with dementia asks for their mother (who died years ago), validation means acknowledging that they miss their mother rather than reminding them she’s gone.
Music therapy and familiar sounds offer powerful comfort. Playing favorite songs from someone’s youth, religious music if they’re spiritual, or nature sounds can reduce agitation and promote calmness. Music accesses deep memories and emotions that remain even when other cognitive functions decline.
Environmental modifications for comfort include reducing noise and bright lights, maintaining comfortable room temperature, using familiar objects and photos, and minimizing unnecessary disruptions. A calm, familiar environment can prevent many behavioral symptoms before they start.
Touch therapies and positioning provide physical comfort and emotional connection. Gentle hand massage, soft stroking of the arm, repositioning for comfort, and simply holding hands can reduce distress significantly. Human touch communicates care even when words no longer reach someone.
These alternatives are most appropriate for patients who are stable with a prognosis of weeks to months rather than days. They should be tried first before starting medications with significant risks. Hospice Medication Handbook: A Caregiver’s Guide to Comfort Medications helps families understand when medications are truly necessary and when alternatives might work just as well.
Essential Resources for Families and Caregivers
The Hospice Journey Handbook: Your Complete Guide Through the Hospice Experience provides comprehensive information about what to expect throughout the hospice journey. This resource covers everything from understanding hospice philosophy to recognizing the signs of approaching death, making it an invaluable companion for families navigating this challenging time.
Understanding Your Rights in Hospice Care: A Guide for Patients and Families focuses specifically on advocacy guidance. This book explains patient rights under Medicare and Medicaid, how to address concerns with your hospice team, when to escalate issues, and how to change hospice providers if necessary. Knowledge of your rights empowers appropriate advocacy.
Hospice Medication Handbook: A Caregiver’s Guide to Comfort Medications helps families understand comfort medications used in hospice care. This resource explains common medications, their purposes, potential side effects, and when they’re most appropriate, enabling informed discussions with healthcare providers.
Guidance for Hospice Nurses and Medical Directors
The Importance of Accurate Prognosis Assessment
Frequency of changes serves as a key indicator of prognosis. A patient whose condition remains stable week after week likely has months to live, while a patient experiencing daily or even hourly changes is much closer to death. Tracking the pace of change helps differentiate between stable patients and those actively dying.
Sleep pattern changes and nutritional decline provide important prognostic information. Document total hours of sleep per 24-hour period, quality of sleep and rest periods, changes in wakefulness, and response to stimulation. Similarly, track specific changes in intake, weight loss patterns, swallowing ability, and hydration status.
Physical changes and their significance include location and extent of skin changes (mottling, temperature variations), changes in consciousness level, breathing pattern alterations, and specific scale measurements for decline. Observable changes in these areas indicate progression toward death.
The difference between stable patients and those actively dying is profound. Stable patients may have minimal changes from visit to visit, maintain relatively normal sleep-wake cycles, continue to eat and drink (even if amounts are reduced), and remain responsive and interactive. Actively dying patients show dramatic changes within hours, sleep constantly or remain unconscious, have stopped eating and drinking, and are minimally or completely unresponsive. Art of Hospice Prognosis: Essential Skills for Clinical Assessment and Family Communication provides detailed guidance on prognostic assessment skills essential for quality hospice care.
Medication Reconciliation Best Practices
Upon admission, perform a comprehensive medication review. This includes reviewing all current medications, identifying potentially inappropriate medications using tools like the Beers Criteria, determining which medications align with hospice goals of care, and creating a plan for deprescribing or continuing each medication.
Before each recertification (90-day, 60-day periods), reassess all medications. Has the patient’s condition changed since the last review? Are all current medications still appropriate? Could any medications be reduced or discontinued? Regular reassessment prevents medication inertia.
Review medications immediately when a patient’s condition changes significantly, including infections, falls, hospitalizations, or new symptoms. Each change in condition represents a potential shift in prognosis and may warrant medication adjustments.
When transitioning begins, perform medication reconciliation to ensure comfort-focused medications are available while reducing or stopping medications that no longer serve the patient’s goals. When active dying starts, perform another review to ensure all medications focus solely on comfort, with aggressive symptom management as needed. Medication Reconciliation in Hospice Care: Maximizing Quality of Life offers comprehensive guidance on implementing effective medication reconciliation practices throughout the hospice journey.
Considering Alternatives First
Assess actual symptoms versus routine prescribing. Is the patient genuinely exhibiting severe agitation or anxiety requiring pharmacological intervention, or could nonpharmacological approaches address the issue? Documentation should reflect specific, observed behaviors rather than general terms like “agitated”.
Agency culture versus individualized care decisions requires honest reflection. Research shows that prescribing patterns vary widely, with benzodiazepine use ranging from 12% to 80% of hospice patients and antipsychotic use from 6% to 62%. This variation suggests that some agencies may have default practices rather than truly individualized approaches.
The wide variation in prescribing patterns (12-80% for benzodiazepines, 6-62% for antipsychotics) across hospices treating similar patients indicates that agency factors influence prescribing decisions. Large and for-profit agencies were significantly more likely to prescribe these medications. This pattern raises questions about whether prescribing is always patient-centered.
First, try nonpharmacological interventions such as validation therapy, music therapy, environmental modifications, touch therapies, and addressing basic needs (pain, hunger, toileting, discomfort from positioning). These approaches carry no medication risks and may be equally or more effective for stable patients.
Documentation and Communication
Document the specific rationale for medication initiation. What symptom is being treated? What was tried before medication? Why is pharmacological intervention needed now? Clear documentation supports quality care and appropriate oversight.
Family discussions about risks and benefits should be documented thoroughly. Did the healthcare team explain the FDA boxed warnings for antipsychotics? Were increased mortality risks discussed? Did the family understand alternatives? Informed consent requires these conversations.
Medication necessity should be regularly reassessed at every visit. Is the medication achieving its intended purpose? Are there side effects? Could the dose be reduced? Documentation should reflect ongoing evaluation, not just initial prescribing decisions.
Team communication about prognosis changes ensures everyone understands the current trajectory. When a patient begins transitioning, the entire interdisciplinary team needs to know so they can adjust their care approaches accordingly. Clear communication prevents fragmented care.
Professional Resources for Clinical Excellence
Art of Hospice Prognosis: Essential Skills for Clinical Assessment and Family Communication provides essential skills for clinical assessment that every hospice nurse and medical director needs. This resource covers measuring decline, recognizing transitioning signs, communicating prognosis to families, and adjusting care plans based on changing trajectories.
Medication Reconciliation in Hospice Care: Maximizing Quality of Life focuses specifically on implementing effective medication reconciliation practices to maximize quality of life. This resource provides step-by-step guidance, case studies, and tools for ensuring every medication serves the patient’s current needs and goals.
The Bigger Picture: Policy and Quality Issues
The Medicare Hospice Benefit and Dementia Care
The six-month prognosis model doesn’t fit dementia well because the disease follows an unpredictable trajectory. Unlike diseases with clearer progression patterns, dementia can remain stable for extended periods before sudden declines occur. This mismatch creates challenges for both patients and providers.
The disconnect between policy and dementia reality means that many patients qualify for hospice care long before they’re actively dying. With dementia now accounting for the majority of hospice enrollees, this disconnect affects a large proportion of patients.
The need for dementia-specific guidance becomes clearer as dementia continues to rise as a hospice diagnosis. Current hospice quality measures and prescribing guidelines were developed when cancer was the predominant diagnosis. Dementia requires different approaches and considerations.
The Transparency Problem
Limited oversight of hospice prescribing exists because Medicare required medication reporting only during a brief period from 2014 to 2018. The University of Michigan study used data from this rare window. Since then, hospices have not been required to report prescribing data to Medicare.
The lack of ongoing medication reporting to Medicare means researchers, regulators, and quality improvement organizations cannot monitor prescribing patterns. This absence of transparency prevents the identification of concerning practices and limits accountability.
The contrast with nursing home quality measures is significant. Nursing homes must report detailed quality measures, including potentially inappropriate medication use. This transparency enables oversight and quality improvement efforts that don’t currently exist for hospice prescribing.
Agency Culture and Prescribing Patterns
How agency size and profit status affect prescribing raises essential questions about care quality. Research found that large and for-profit hospice agencies were significantly more likely to prescribe benzodiazepines and antipsychotics. These organizational characteristics should not determine medication decisions.
The wide variation between hospices (12-80% for benzodiazepines, 6-62% for antipsychotics) treating similar patient populations suggests that some agencies may follow routine practices rather than individualized care. This variation indicates an opportunity for standardization based on evidence and patient needs.
Examining this variation clearly reveals the need for standardized, evidence-based approaches. While individualized care remains essential, baseline standards for when to consider these medications, what alternatives to try first, and how to monitor their effects would improve consistency and safety.
Real-World Scenarios and Decision-Making
Scenario 1: New Hospice Admission with Months Prognosis
Your mother just enrolled in hospice with dementia. She’s still eating, talking, and recognizing family members. The hospice nurse suggests starting Ativan for anxiety.
Questions families should ask: “Is my mother transitioning or actively dying, or does she have more time?” “What specific anxiety symptoms are we trying to treat?” “What nonpharmacological approaches could we try first?” and “What are the risks of starting this medication now, given that she may live for months?”
Considerations before starting benzodiazepines or antipsychotics include understanding that your mother’s prognosis suggests months of life remaining, excessive sedation could reduce her quality of interactions with family, and fall risk increases significantly with these medications. These factors matter when someone isn’t actively dying.
Alternative approaches to try first include validation therapy for anxiety-provoking situations, music therapy with familiar songs, structured daily routines to reduce confusion, and addressing basic comfort needs first. Many symptoms respond to these interventions without medication risks.
Scenario 2: Patient Transitioning to Active Dying
Your father with dementia has been on hospice for four months. Over the past three days, he’s begun sleeping almost constantly, stopped eating, and barely responds when you talk to him.
Recognizing the signs means understanding he’s likely entering the transitioning or active dying phase. The dramatic changes over just a few days, combined with decreased consciousness, indicate his body is shutting down.
When comfort medications become appropriate is now. If he shows signs of restlessness, agitation, or distress, benzodiazepines or antipsychotics may provide essential comfort during the dying process. The risk-benefit calculation changes dramatically when someone is actively dying.
The natural dying process and family education should include understanding that these changes are normal, comfort is the priority now, and medications that might have been questionable months ago are now appropriate and compassionate. The hospice team should explain what to expect and how they’ll ensure comfort.
Scenario 3: Medication Started Early, Patient Stable for Months
Your spouse started taking Haldol in the first week of hospice enrollment six months ago. They remain stable, still eating and interacting with family, with no signs of transitioning.
Reassessing medication necessity is crucial in this situation. Ask: “Is this medication still needed?” “What would happen if we tried reducing or stopping it?” “Are there side effects we’ve attributed to the dementia that might actually be from the medication?”
Discussing trial discontinuation means having an honest conversation with the hospice team about whether the medication serves a clear purpose now. A gradual reduction (tapering) can be tried with close monitoring to see if symptoms return. Many patients do well with careful deprescribing.
Balancing risks and benefits requires considering that your spouse has remained stable for months, suggesting more time ahead, continued medication exposure carries cumulative risks, and quality of life might improve with reduced sedation. Regular medication reconciliation identifies these opportunities for improvement.
Call to Action: Working Together for Better Care
For Families, Caregivers, and End-of-Life Doulas
Educate yourselves about medications and patient rights using reliable resources. Knowledge empowers you to ask informed questions and recognize when something doesn’t seem right. The resources recommended throughout this article provide trustworthy, comprehensive information.
Ask questions about prognosis and medication rationale whenever medications are recommended. Don’t hesitate to request clarification or more information. Your hospice team should welcome questions as part of patient-centered care.
Request medication reconciliation at key points: admission, before recertifications, at any significant condition change, when transitioning begins, and when active dying starts. This practice ensures medications continue to serve your loved one’s current needs.
Understand when comfort medications are truly needed, which is typically during transitioning and active dying, when the focus shifts entirely to comfort. Don’t refuse medications that could ease suffering during the final phase of life.
Trust the natural dying process during transition and active dying means accepting that these phases require different medication approaches. What seemed questionable when your loved one had months to live becomes essential and compassionate at the end.
Advocate with knowledge and compassion by approaching your hospice team as partners rather than adversaries. Frame concerns as questions rather than accusations, seek to understand their perspective while sharing yours, and work together toward shared goals of comfort and dignity.
For Hospice Nurses and Medical Directors
Assess prognosis accurately and update it regularly using objective measures of decline. Track frequency of changes, sleep patterns, nutritional status, and physical changes to determine whether patients are stable, declining gradually, or actively dying. Your assessment drives appropriate medication decisions.
Perform medication reconciliation at critical junctures: admission, before each recertification, at significant condition changes, when transitioning begins, and when active dying starts. Each review ensures medications match the patient’s current needs and prognosis.
Consider the timeline when recommending psychotropic medications. A patient with months to live requires different considerations than one entering the active dying phase. The research showing 41% increased mortality with benzodiazepines should inform prescribing decisions, especially early in care.
Explore nonpharmacological interventions first for stable patients. Validation therapy, music therapy, environmental modifications, and addressing basic comfort needs may resolve symptoms without medication risks. Save medications with significant risks for when they’re truly needed.
Document decision-making thoroughly, including specific symptoms being treated, alternatives attempted, rationale for medication initiation, and family education provided. Clear documentation supports quality care and appropriate oversight.
Educate families about the phases of dying so they understand when medication approaches appropriately change. Explain the difference between stable patients with months to live and those entering transitioning and active dying. This education helps families accept comfort medications when truly needed.
Evaluate each patient’s unique situation rather than following routine practices to prioritize individualized care over agency protocols. While guidelines help, every patient deserves individualized assessment and care planning.
Conclusion
The University of Michigan study provides important information about medication risks in hospice dementia care, but the findings should inspire awareness without fear. The research highlights opportunities for improvement in how medications are prescribed, monitored, and reassessed throughout the hospice journey.
Emphasis on partnership between families and hospice teams remains essential. Quality hospice care emerges from open communication, mutual respect, and shared decision-making. Families bring intimate knowledge of their loved one’s values and preferences, while hospice professionals bring clinical expertise.
The goal is optimal comfort at every stage while preserving quality time for as long as possible. This means thoughtful medication decisions that match each person’s current prognosis and needs. This might mean trying nonpharmacological approaches for stable patients with months to live first. For those transitioning or actively dying, it means aggressive comfort measures, including appropriate medications.
Open communication should be encouraged in both directions. Families should feel empowered to ask questions, express concerns, and participate actively in care decisions. Hospice professionals should welcome these conversations as essential to quality care.
This final reminder that transitioning and active dying medications are appropriate and compassionate brings us full circle. The research doesn’t suggest avoiding these medications entirely but rather using them thoughtfully and matching them to each patient’s current condition. When someone you love is actively dying, comfort medications provide essential relief and honor their dignity during life’s final transition.
Resources
Common hospice medications linked to higher risk of death in people with dementia
Benzodiazepine or Antipsychotic Use and Mortality Risk Among Patients With Dementia in Hospice Care
The Hospice Journey Handbook: Your Complete Guide Through the Hospice Experience
Understanding Your Rights in Hospice Care: A Guide for Patients and Families
Hospice Medication Handbook: A Caregiver’s Guide to Comfort Medications
Art of Hospice Prognosis: Essential Skills for Clinical Assessment and Family Communication
Medication Reconciliation in Hospice Care: Maximizing Quality of Life
How to read and apply the FAST Scale to stage any type of dementia. Dementia Staging Made Easy.
📚 This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and free from advertisements, so I can continue providing helpful articles and resources at no charge.
💝 If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times. 💙
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease and Other Dementias
Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers, Fifth Edition, Revised and Expanded
Caregiver Support Book Series
Dementia Caregiver Essentials: Comprehensive Guide for Dementia Care (one book that contains the ten books below for less than one-third the price of all ten)
The Validation Breakthrough: Simple Techniques for Communicating with People with ‘Alzheimer’s-Type Dementia’
Dementia Home Care: How to Prepare Before, During, and After
DEMENTIA DENIED: One Woman’s True Story of Surviving a Terminal Diagnosis & Reclaiming Her Life
Atypical Dementias: Understanding Mid-Life Language, Visual, Behavioral, and Cognitive Changes
The Dementia Caregiver’s Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout
Fading Reflection: Understanding the complexities of Dementia
Dementia Caregiving: A Self Help Book for Dementia Caregivers Offering Practical Coping Strategies and Support to Overcome Burnout, Increase Awareness, and Build Mental & Emotional Resilience
Navigating the Dementia Journey: A Compassionate Guide to Understanding, Supporting, and Living With Dementia
Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers
Four Common Mistakes by Caregivers of Loved Ones with Dementia and What Do Differently (video)
Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources
CaringInfo – Caregiver support and much more!
Surviving Caregiving with Dignity, Love, and Kindness
Caregivers.com | Simplifying the Search for In-Home Care
📚 This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and free from advertisements, so I can continue providing helpful articles and resources at no charge.
💝 If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times. 💙
Caregiver Support Book Series
VSED Support: What Friends and Family Need to Know
My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]
Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm
The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself
Dear Caregiver, It’s Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One
Everything Happens for a Reason: And Other Lies I’ve Loved
The Art of Dying
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Empowering Excellence in Hospice: A Nurse’s Toolkit for Best Practices book series
Holistic Nurse: Skills for Excellence book series
Bridges to Eternity: The Compassionate Death Doula Path book series:
Additional Books for End-of-Life Doulas
VSED Support: What Friends and Family Need to Know
Find an End-of-Life Doula
Currently, there is no official organization governing end-of-life doulas (EOLDs). Keep in mind that some EOLDs listed in directories might no longer be practicing; always check their current status.
End-of-Life Doula Schools
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
The International Doula Life Movement (IDLM)
The International End-of-Life Doula Association (INELDA)
University of Vermont. End-of-Life Doula School
Kacie Gikonyo’s Death Doula School
Laurel Nicholson’s Faith-Based End-of-Life Doula School
National End-of-Life Doula Alliance (NEDA) – not a school, but does offer a path to certification
Keep in mind that currently, there is no official accrediting organization for end-of-life doula programs. It’s recommended to have discovery sessions with any doula school you’re evaluating—whether listed here or not—to ensure it aligns with your needs. Additionally, ask questions and reach out to references, including former students, to determine if the school provided a strong foundation for starting your own death doula practice.
End-of-Life-Doula Articles
