When Martha’s 82-year-old mother was rushed to the hospital from her nursing home with a urinary tract infection, Martha never imagined the next 48 hours would become a nightmare. Her mother, who had advanced dementia, became terrified in the unfamiliar hospital environment. She pulled out her IV, tried to escape her bed repeatedly, and screamed when nurses attempted to help her. The family had no advance directives in place. No one knew what her mother would have wanted. The medical team performed every intervention possible, including restraints and sedating medications that left her mother in a fog for weeks afterward.
Martha’s story isn’t unique. Recent research reveals a troubling pattern: nursing home residents with dementia routinely undergo distressing hospital experiences, yet most lack do-not-resuscitate (DNR) orders, and referrals to hospice and palliative care remain rare. The study found that patients and their families often enter these crises completely unprepared, without the protective documentation that could prevent unnecessary suffering.
This article empowers you with knowledge about advance planning that can protect your loved one with dementia. You’ll learn when palliative care and hospice become appropriate, understand the truth about CPR and DNR orders, and discover concrete steps to ensure your loved one’s comfort and dignity remain priorities—even during medical emergencies.
Understanding the Hospitalization Experience
What Research Tells Us About Dementia and Hospitalization
The statistics paint a concerning picture of what happens when nursing home residents with dementia face hospitalization. Research shows that these patients experience significantly higher hospitalization rates than residents without cognitive impairment. Emergency department visits and hospital admissions occur frequently, often triggered by conditions that might have been managed differently with proper advance planning in place.
Common reasons for hospitalization among dementia patients include:
Infections such as urinary tract infections, pneumonia, and sepsis
Falls and fractures resulting from mobility challenges and confusion
Cardiovascular issues, including heart failure exacerbations
Dehydration and malnutrition from difficulty eating and drinking
Hospital environments create unique challenges for people with dementia. The unfamiliar surroundings, constant noise, bright lights, and frequent disruptions can trigger or worsen delirium—a state of severe confusion that affects many hospitalized dementia patients. One study found that transfers to hospitals are often traumatic and stressful experiences for residents, and they don’t usually align with the priorities and goals of the patient.
The risks associated with hospitalization extend far beyond the immediate medical crisis. Research documents serious complications, including:
Hospital-acquired delirium can permanently worsen cognitive function.
Functional decline, with many patients losing abilities they had before admission.
Hospital-acquired infections from catheter use and immobility.
Medication errors and adverse drug reactions in an already vulnerable population.
Increased mortality risk during and after hospitalization.
Perhaps most troubling, family members who witness their loved ones’ distress during hospitalization experience significant emotional trauma. Studies show that observing a loved one in pain, choking, or appearing to have “had enough” creates lasting fear and helplessness among family caregivers.
Why Most Dementia Patients Lack Proper Protections
Despite these well-documented risks, a significant gap exists in advance care planning for dementia patients. Research consistently shows that most nursing home residents with dementia do not have DNR orders in place, and referrals to hospice and palliative care services remain rare.
Why does this gap persist? Families often wait too long to have these critical conversations. Many people associate advance directives and DNR orders with “giving up” rather than recognizing them as protective measures that honor a person’s values and preferences. The emotional difficulty of acknowledging that dementia is a terminal, progressive disease leads many families to postpone planning until a crisis forces reactive rather than proactive decisions.
The consequences of this delay are significant. Without advance directives, families face impossible decisions during medical emergencies, when emotions run high and time is tight. Healthcare providers default to full interventions—including CPR, feeding tubes, and aggressive treatments—that may not align with what the patient would have wanted. The burden placed on family members making these decisions without guidance creates lasting guilt, family conflict, and complicated grief.
The Critical Role of Palliative Care vs. Hospice Care
Palliative Care: Earlier Support Than You Think
Many families don’t realize that palliative care differs fundamentally from hospice care and can begin much earlier in the dementia journey. Understanding this distinction opens the door to support that can improve quality of life for both patients and caregivers throughout disease progression.
Palliative care focuses on providing relief from symptoms and stress of a serious illness, regardless of the diagnosis or prognosis. Unlike hospice, palliative care:
Can start at any age and any stage of illness, including at the time of diagnosis.
Works alongside curative treatments and disease-modifying therapies.
Does not require a six-month prognosis.
Requires only a diagnosis of a serious health condition and a physician referral.
For dementia patients, this means palliative care can appropriately begin soon after diagnosis. The European Association for Palliative Care actually recommends considering the diagnosis of dementia itself as the starting point for palliative care. This early approach allows the care team to address symptoms like pain, agitation, and anxiety while the person can still participate in decisions about their future care.
The benefits of early palliative care adoption are substantial. Palliative care teams help manage distressing symptoms, coordinate care across providers, support family caregivers, and facilitate advance care planning conversations. Perhaps most importantly for nursing home residents, palliative care can reduce unnecessary hospitalizations by providing expert symptom management and 24/7 support that allows issues to be resolved without emergency department visits.
When It’s Time for Hospice in Dementia Care
While palliative care can begin early, hospice care becomes appropriate when a person with dementia has a prognosis of six months or less if the disease follows its expected course. This six-month guideline isn’t a rigid deadline but rather a clinical determination that helps families access this specialized, comfort-focused care at the right time.
Key indicators that signal hospice appropriateness for dementia patients include:
Multiple emergency room visits or hospitalizations, particularly three or more in the last three to twelve months.
Recurrent infections such as aspiration pneumonia, sepsis, or urinary tract infections that become increasingly difficult to treat.
Significant weight loss, typically 10% of body weight over six months, despite attempts to maintain nutrition.
Rapid disease progression with noticeable functional decline over weeks or months rather than years.
Loss of appetite and difficulty eating or drinking, including choking episodes or refusal of food.
Stage 3 or 4 pressure ulcers that develop despite appropriate treatment and prevention efforts.
Advanced functional decline, including being bedbound or chairbound, needing complete assistance with all daily activities, and loss of meaningful communication.
It’s important to understand that the six-month prognosis guideline represents an estimate, not an expiration date. If a patient’s condition stabilizes or improves, they can continue receiving hospice care as long as they remain eligible. Conversely, some patients may live longer than six months while still appropriately receiving hospice services.
Hospice care focuses entirely on comfort and quality of life rather than curative treatments. For dementia patients, this means expert management of pain, agitation, and other distressing symptoms, along with comprehensive support for family caregivers navigating this difficult journey.
Understanding DNR Orders: Separating Fact from Fiction
The Reality of CPR for Elderly and Frail Patients
Television medical dramas have created dangerously unrealistic expectations about CPR. On TV, CPR appears successful about 75% of the time, with patients typically making full recoveries. The reality for elderly and frail patients—particularly those with advanced dementia—could not be more different.
Statistics that families need to know about CPR survival rates:
Only 1-2% of people who receive CPR at home survive.
About 5% survive CPR attempts in nursing homes and assisted living facilities.
Approximately 20% survive CPR in hospitals where full resuscitation teams and equipment are immediately available—but many of these survivors experience severe complications.
Among elderly patients over age 80-89 who have cardiac arrest outside the hospital, recent studies found only one survivor out of 202 people. For those over 90, there were zero survivors.
For frail elderly patients during surgery, only 1 in 3 survives CPR attempts.
These statistics become even more sobering when you understand the physical consequences of CPR. Effective chest compressions require pushing hard and fast—about 2 inches deep at a rate of 100-120 compressions per minute. This violent force, necessary to circulate blood, causes predictable injuries:
Broken ribs occur in 81% of people who receive CPR.
Brain damage from oxygen deprivation affects about one-third of survivors.
Punctured lungs, damage to internal organs, and severe bruising are common.
There is a need for life support machines, with many survivors unable to breathe or eat on their own.
They are transferred to intensive care units and nursing facilities rather than returning to their previous lives.
For patients with advanced dementia, these facts carry special weight. CPR doesn’t cure dementia, heart failure, cancer, or any other terminal condition. Even if CPR successfully restarts the heart, the person still has their progressive, terminal illness. They may now face dying in an ICU connected to machines rather than peacefully at home surrounded by family.
One family member captured this reality perfectly: “I don’t want him to die of a heart attack—he has cancer.” The hospice nurse’s compassionate response speaks truth: “The patient is terminal. Most likely, if the disease progresses, the patient will succumb to the disease. Performing CPR won’t stop the disease progression.”
Out-of-Hospital DNR vs. Medical DNR Orders
Understanding the two types of DNR orders helps ensure comprehensive protection for your loved one in all settings.
Out-of-Hospital DNR forms:
They are used outside hospital settings, including homes, nursing homes, and assisted living facilities.
In many states, they do not require a physician’s signature, though requirements vary.
Provide clear identification for emergency responders (paramedics, EMTs) that CPR should not be performed.
Must be prominently displayed or easily accessible so emergency personnel can find them quickly.
May include medical alert bracelets or wallet cards for additional identification.
Medical DNR orders:
These are hospital-based orders that apply within healthcare facilities.
Require a physician’s order and become part of the patient’s medical record.
Apply during hospital admissions, emergency department visits, and sometimes within nursing homes.
They are sometimes included in POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) forms.
Why both may be needed: Emergency responders in the community setting must see an out-of-hospital DNR form—they cannot accept verbal instructions from family members. Once a patient arrives at a hospital, the medical DNR order in their chart guides the hospital staff. Having both ensures protection across all care settings.
What DNR Does NOT Mean
The most dangerous myth about DNR orders is that they mean “do not treat.” This is absolutely false. DNR specifically addresses only CPR—what happens if the heart stops or breathing ceases.
Treatments that continue with DNR orders include:
Antibiotics for infections that cause discomfort or pain.
Pain management with appropriate medications to ensure comfort.
Oxygen for comfort, though not mechanical ventilation, for life prolongation.
Treatment of reversible conditions that impact quality of life.
Management of symptoms like nausea, anxiety, and shortness of breath.
The importance of discussing the benefits and risks of each treatment cannot be overstated. Just because someone has chosen DNR doesn’t mean every treatment should be declined. Instead, each medical decision should involve a thoughtful conversation about:
Will this treatment improve comfort or quality of life?
What are the potential burdens or side effects?
Does this align with the patient’s values and goals?
Is this a reversible condition worth treating, or a natural progression of terminal illness?
Quality-of-life considerations drive these treatment decisions. For example, treating a urinary tract infection with antibiotics makes sense if the infection causes pain and discomfort—the DNR status simply means that if the heart stops, CPR won’t be attempted. The goal becomes maximizing comfort and dignity while avoiding interventions that prolong suffering without improving quality of life.
The Power of Complete Advance Directives
Why Up-to-Date Advance Directives Matter
The research quote bears repeating: “Patients undergoing hospital admission suffered distressing experiences, but most patients did not have do-not-resuscitate orders, and referrals to hospice and palliative care were rare. Patients and their family members should be informed about the hospital experience before admission and offered appropriate care services.”
What happens without proper documentation? Healthcare providers must default to full medical interventions, regardless of whether these align with the patient’s values. Families face agonizing decisions without knowing what their loved one would have wanted. The burden placed on family members during crises—trying to guess what Mom or Dad would choose while doctors press for immediate decisions—creates lasting emotional trauma.
One daughter described it this way: “We had no idea what Mom wanted. My brother thought we should do everything possible. I felt like we were torturing her. We’re still not speaking two years later.” Advance directives prevent this heartbreak by providing clarity when it matters most.
Components of Comprehensive Advance Planning
Complete advance planning includes multiple documents that work together:
Living will/advance directive: Specifies what medical treatments you want or don’t want in various scenarios
Healthcare power of attorney: Names a trusted person to make medical decisions if you cannot
Durable finaical power of attorney: Names a trusted person to make financial decisions if you cannot
POLST/MOLST forms: Medical orders signed by a physician that emergency responders must follow
Out-of-hospital DNR: Protects against unwanted CPR in community settings
Medical DNR orders: Apply in hospital and healthcare facility settings
Additional addendums for dementia, mental health, and VSED
None
None
Rarely
Always
Family Facilitation
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None
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Vetting Required
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Personal research
Personal research, licensing
Testimonials and interviews
Best For
Medical professionals with clear preferences
Simple situations, budget-conscious
Complex estates, anticipated legal challenges
Most adults seeking comprehensive guidance
Health and Life Navigation Specialists: A Bridge to Comprehensive Planning
An Emerging Resource for Families
Health and Life Navigation Specialists represent an emerging professional resource that specializes in areas often overlooked by traditional healthcare and legal services. These professionals provide expertise in advance directives, grief coaching, dementia care coaching, and illness navigation—helping families see the complete picture rather than fragmented pieces. They bridge gaps between medical, legal, emotional, and practical planning needs, offering families comprehensive support throughout their caregiving journey.
Taking Action: A Roadmap for Families
For Early to Middle-Stage Dementia
When dementia is in the early to middle stages, proactive planning makes the most significant difference. An annual review of advance directives is recommended during this phase. This yearly check-in ensures documents reflect current wishes and circumstances.
Having conversations with your loved one while they can still participate is precious and irreplaceable. These discussions allow the person with dementia to express their values, preferences, and priorities in their own words. They can share what quality of life means to them, what they fear most, and what brings them comfort.
Establishing relationships with palliative care at this stage can prevent crises later. Remember, palliative care doesn’t require a terminal prognosis—just a serious illness diagnosis. Early palliative care provides symptom management, care coordination, and caregiver support throughout the disease journey.
Considering future scenarios proactively allows families to make thoughtful decisions rather than rushed ones during emergencies. Discuss questions like: What would make life worth living? At what point would aggressive medical interventions cause more burden than benefit? Where would they want to spend their final days?
For Advanced Dementia
As dementia progresses to advanced stages, the pace of planning intensifies. Quarterly review of advance directives becomes essential. The disease can change rapidly during this phase, requiring frequent reassessment of care goals and documentation.
Strong consideration of out-of-hospital DNR and medical DNR orders is appropriate for advanced dementia. Given the extremely low CPR survival rates for this population and the high likelihood of complications, many families choose DNR status to prevent traumatic, futile interventions.
Evaluating hospice eligibility should happen proactively rather than waiting for a crisis. If your loved one shows signs like recurrent infections, significant weight loss, or advanced functional decline, request a hospice evaluation. Hospice can provide expert comfort care, reduce unnecessary hospitalizations, and support the entire family.
Ensuring all caregivers and facilities have current documentation prevents dangerous gaps. Provide copies of advance directives, DNR forms, and POLST/MOLST documents to:
The primary care physician.
Any specialists involved in care.
The nursing home or assisted living facility.
Emergency contacts and family members.
The healthcare power of attorney.
The financial power of attorney.
Building Your Support Team
Involving healthcare providers in conversations brings medical expertise to planning discussions. Your loved one’s doctor can explain what to expect as dementia progresses, what symptoms typically emerge, and which interventions provide genuine benefit versus those that prolong suffering.
Considering a Health and Life Navigation Specialist for specialized guidance offers support that addresses the full scope of advance planning—medical, legal, emotional, and practical. These professionals help families navigate complex decisions with compassionate expertise.
Keeping family members informed and aligned prevents conflicts during crises. Regular family meetings to discuss your loved one’s condition, review care goals, and ensure everyone understands the plan, create unity when difficult decisions must be made.
Conclusion: Compassionate Planning Is an Act of Love
Advance planning for a loved one with dementia isn’t about giving up hope or surrendering to pessimism. It’s about protection—protecting your loved one from unwanted medical interventions, protecting their dignity and comfort, and protecting your family from the burden of making impossible decisions without guidance.
Planning provides clarity during a crisis. When emergencies happen—and with dementia, they often will—having advance directives in place means you can focus on being present with your loved one rather than frantically making medical decisions under pressure. You’ll have confidence that the care being provided aligns with their values and wishes.
Now is the time to take action. We encourage you to:
Review advance directives regularly: annually for loved ones with early- to middle-stage dementia, quarterly for those with advanced dementia.
Strongly consider DNR orders for advanced dementia: Given the realities of CPR outcomes, DNR status often represents compassionate protection.
Explore palliative and hospice care options proactively: Don’t wait for a crisis to learn about services that can provide support throughout the disease journey.
Consider establishing a relationship with a Health and Life Navigation Specialist: Specialized guidance can help you navigate the full scope of planning needs.
Every conversation you have, every document you complete, every decision you make thoughtfully rather than reactively is an act of profound love. You’re giving your loved one the gift of comfort, dignity, and care that honors who they are and what matters most to them. You’re also giving yourself and your family the gift of peace—knowing you’re doing everything possible to protect the person you love during their most vulnerable time.
Planning isn’t about preparing to let go. It’s about holding on to what matters most: your loved one’s comfort, their dignity, and the precious time you have together. Start these conversations today. Your future self—and your loved one—will thank you.
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📚 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. 💙
At present, no official organization oversees end-of-life doulas (EOLDs). Remember that some EOLDs listed in directories may no longer be practicing, so it’s important to verify 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:
Remember that there is currently no official accrediting body for end-of-life doula programs. Certification only means one graduated from a program. It’s advisable to conduct discovery sessions with any doula school you’re considering—whether or not it’s listed here—to verify that it meets your needs. Also, ask questions and contact references, such as former students, to assess whether the school offered a solid foundation for launching your own death doula practice.
