When to send a dementia patient to the hospital: Understanding emergency and non-emergency situations

According to the Alzheimer's Association, individuals with dementia are more likely to be hospitalized than those without. Understanding when to send a dementia patient to the hospital can be challenging, as symptoms of an underlying medical issue can often be masked by behavioral changes already associated with the disease. Caregivers must be vigilant in differentiating between typical dementia progression and a true medical emergency to ensure their loved one receives timely and appropriate care.

Quick Summary

This guide outlines the critical signs indicating a medical emergency or health crisis in a dementia patient that warrants immediate hospitalization. It also covers non-emergency situations where a doctor's visit is sufficient, emphasizing the importance of thorough preparation and caregiver support.

Key Points

• Differentiate from Delirium: Recognize that a sudden, rapid decline in mental state (delirium) is an urgent medical issue, distinct from the gradual progression of dementia, and needs immediate medical attention.

• Call 911 for Emergencies: Do not hesitate to call 911 for obvious emergencies such as breathing difficulties, seizures, uncontrolled bleeding, or suspected stroke or heart attack.

• Prepare an Emergency Folder: Keep a folder with vital medical information, medication lists, and advance directives to provide essential context to hospital staff during an emergency.

• Communicate the Patient's Normal Baseline: Inform hospital staff about the patient's typical behavior and routine to help them distinguish between dementia symptoms and a new medical problem.

• Use Outpatient Care When Possible: For gradual changes in symptoms or non-life-threatening issues, consulting the patient's primary care physician can prevent the stress and disorientation of an unnecessary hospital visit.

• Explore Alternatives to Hospitalization: For late-stage symptoms, alternatives like home health agencies, respite care, or palliative care can prioritize the patient's comfort and prevent unnecessary hospital admissions.

• Advocate for Consistent Care: In the hospital, work with staff to maintain routines as much as possible and minimize overstimulation, which can worsen confusion.

Recognizing Medical Emergencies and When to Call 911

For a dementia patient, a health crisis can manifest as sudden, dramatic changes in behavior rather than typical symptoms. This can make it difficult for caregivers to determine if an issue is medical or behavioral. It is always better to err on the side of caution and seek medical attention for any concerning changes, but especially for these clear signs of an emergency.

Immediate action is needed for the following:

• Breathing difficulties: Labored breathing, shortness of breath, or a sudden change in breathing patterns.
• Unconsciousness or non-responsiveness: If the patient faints or is difficult to wake.
• Uncontrolled bleeding: Severe or uncontrolled bleeding from any part of the body.
• Seizures: Any uncontrolled shaking or twitching.
• Suspected stroke or heart attack: Symptoms like chest pain, pressure, sudden weakness, slurred speech, or unexplained dizziness.
• Severe injuries: A serious fall resulting in a possible fracture or head injury.
• Delirium: A state of extreme confusion that is a rapid, dramatic change from the patient's typical baseline. This is often caused by an underlying medical issue, such as an infection (e.g., a urinary tract infection).
• Severe abdominal pain: Intense, persistent pain that does not go away.

If you observe these signs, you should call 911 immediately. Emergency responders can perform an initial assessment and provide transport, ensuring the patient's needs are communicated effectively to hospital staff.

Deciding on Non-Emergency Hospital Visits

Not every health concern requires an ambulance or an emergency room visit. In many cases, consulting the patient's primary care physician is the appropriate first step. Non-emergency situations that warrant a doctor's visit include:

• Subtle but persistent changes: Gradual declines in hygiene, eating habits, or mobility.
• Increased agitation or aggression: While distressing, these behavioral issues alone may not constitute an emergency unless they pose an immediate physical threat. A physician can investigate potential underlying causes, such as medication side effects or pain.
• Unexplained pain: People with dementia may not be able to articulate pain. Caregivers should watch for non-verbal cues like grimacing, moaning, or sudden behavioral changes.
• Managing advanced symptoms: As dementia progresses, symptoms like incontinence, swallowing difficulties, and increased frailty may require a change in care plan rather than immediate hospitalization.

Preparing for a Hospital Visit

Whether the trip is planned or an emergency, preparation is key. Having a personal information sheet ready can significantly improve communication with hospital staff and ensure the patient receives consistent care.

A prepared hospital bag should contain:

• List of all medications, dosages, and prescribing doctors.
• Advance directives or power of attorney documents.
• Personal information sheet detailing the patient's routines, preferences, triggers, and communication methods.
• Comforting personal items, like a favorite blanket or photo album.
• Insurance cards and healthcare provider contact information.

Comparison of Hospital vs. At-Home Care

Understanding when a hospital stay is truly beneficial versus when it may cause more distress is vital for caregivers. While a hospital offers immediate, high-level medical intervention, the unfamiliar environment can worsen cognitive symptoms.

Aspect	Hospitalization	At-Home Care with Support
Environment	Unfamiliar, noisy, and potentially overstimulating, leading to increased confusion and anxiety.	Familiar, comforting, and personalized, which can reduce agitation and distress.
Level of Medical Care	Intensive, 24/7 medical supervision for acute conditions.	Typically manages non-emergency symptoms with regular physician visits and support from home health agencies.
Risk of Delirium	Higher risk due to unfamiliar surroundings, disrupted routine, and potential for new medications.	Lower risk of acute confusion episodes tied to environmental changes.
Routine	Disrupted due to hospital procedures and scheduling.	Follows the established routine, which promotes comfort and predictability.
Caregiver Role	Acts as an advocate, providing crucial information to staff who are not familiar with the patient.	Provides day-to-day care, with support from external services as needed.

Avoiding Unnecessary Hospitalization

Unnecessary hospital visits can be traumatic for dementia patients. By managing the condition proactively, caregivers can sometimes prevent crises. This involves:

• Routine medical care: Ensuring regular check-ups to manage chronic conditions and prevent small issues from escalating.
• Caregiver education: Learning to recognize non-verbal cues of pain or discomfort.
• Utilizing community resources: Exploring alternatives like adult day programs, home health agencies, or palliative care, which focus on comfort and quality of life.
• Creating a dementia-friendly environment: Implementing safety measures at home to prevent falls and other accidents.
• Considering hospice care: For advanced dementia, hospice focuses on comfort and can be a more appropriate alternative to repeated hospitalizations.

The Role of Palliative and Hospice Care

For people in the later stages of dementia, palliative or hospice care can offer a focus on symptom management and quality of life rather than curative treatment. Palliative care can be introduced at any stage of the illness, while hospice is for those nearing the end of life. Discussing these options with a healthcare team can help families make informed decisions about care that prioritizes the patient's comfort.

Conclusion: Prioritizing Patient Well-being

Deciding when to send a dementia patient to the hospital is one of the most challenging decisions a caregiver can face. It requires a clear understanding of the distinction between an acute medical crisis and the ongoing, progressive symptoms of dementia. By recognizing red-flag symptoms like sudden confusion or breathing issues and calling 911 when necessary, caregivers can ensure their loved one receives emergency care. For non-emergencies, proactive management, open communication with a healthcare team, and the careful consideration of alternatives like home health or palliative care can help provide the best possible outcome for the patient's comfort and dignity, preventing unnecessary distress associated with hospitalization.

Further reading: Information and resources for caregiving

Keypoints

• Recognize Delirium: A sudden, rapid decline in mental state, distinct from typical dementia progression, can signal an underlying medical issue and requires immediate medical attention.
• Call 911 for Clear Emergencies: Uncontrolled bleeding, chest pain, seizures, or loss of consciousness are undeniable emergencies that warrant an immediate 911 call.
• Watch for Non-Verbal Pain Cues: Since patients may struggle to express pain, caregivers must look for signs like agitation, moaning, or grimacing, which could indicate a medical problem.
• Consider Outpatient Visits for Less Severe Issues: Gradual changes in behavior, hygiene, or mood often warrant a consultation with a primary care physician rather than an emergency room trip.
• Prepare an Emergency Folder: A folder containing medication lists, advance directives, and patient preferences can significantly help hospital staff provide better, more personalized care.
• Minimize Hospital Stress: The unfamiliar hospital environment can cause increased confusion and agitation. Consider alternatives like home health or palliative care for non-urgent situations to minimize this distress.
• Discuss Advance Care Planning: Have conversations with the healthcare team about palliative or hospice care, especially in advanced dementia, to prioritize comfort over aggressive treatment.

FAQs

Q: What is delirium, and how is it different from dementia? A: Delirium is a sudden, severe state of confusion and altered mental status that is a medical emergency, often caused by an infection, dehydration, or a side effect of medication. In contrast, dementia is a chronic, progressive decline in cognitive function over time. A dementia patient can experience delirium, which is a key sign that something is medically wrong.

Q: Should I call 911 for aggressive or agitated behavior? A: You should call 911 if the aggressive or agitated behavior poses an immediate physical risk to the patient or others. However, if the behavior is distressing but not immediately dangerous, it may be more appropriate to contact the patient's doctor to explore potential causes and management strategies.

Q: How can I help a dementia patient in an unfamiliar hospital environment? A: Keep a family member or trusted friend with the patient as much as possible. Maintain a calm demeanor, provide reassurance, and use familiar items to provide comfort. Provide hospital staff with a personal information sheet detailing the patient's routines, preferences, and triggers to help manage agitation and confusion.

Q: When is palliative or hospice care a better option than hospitalization? A: Palliative care focuses on comfort and symptom management and can be introduced at any stage of dementia. Hospice care is typically considered when a patient is in the advanced stages of dementia and repeated hospitalizations are no longer providing a benefit for their quality of life. Discussions about these options with a healthcare team are crucial for advanced care planning.

Q: What should I include in a hospital information sheet for a dementia patient? A: Include the patient's full name, date of birth, diagnosis, list of all medications and allergies, healthcare provider contact information, normal routine and sleep schedule, communication preferences, likes and dislikes, and any known triggers for agitation.

Q: Can dehydration be a reason to go to the hospital? A: Yes. Dehydration is a common cause of delirium in older adults, including those with dementia. Severe dehydration requires urgent medical attention, as it can be life-threatening. If you suspect dehydration, monitor for signs like low fluid intake, dry mouth, or increased confusion and contact a doctor or go to the ER.

Q: What if the patient has had a fall? A: If a patient with dementia has fallen, and you suspect a serious injury, such as a broken bone or head trauma, call 911. If the patient is conscious and seems uninjured but you are unable to lift them, you can call 911 for a “lift assist”. Do not try to move them yourself if you suspect a significant injury.

Citations

• National Institute on Aging (.gov) - Taking a Person With Alzheimer's Disease to the Hospital, 2024
• PlaneTree Health Library - Coping with a Health Crisis: calling 911 or trip to ER, 2024
• Alzheimer's Association - Respite Services, 2024
• YouTube - Palliative Care And Hospice Conversations For Dementia Caregivers, 2023
• National Institute on Aging (.gov) - Taking a Person With Alzheimer's Disease to the Hospital, 2024
• Memory and Aging Center - Acute Hospitalization and Alzheimer's Disease, 2024

Frequently Asked Questions

What is the key difference between a dementia symptom and a medical emergency?

A key difference is the speed and nature of the change. Dementia symptoms typically progress slowly over time. A medical emergency, however, often causes a rapid, acute, and dramatic change in the patient's condition, such as sudden confusion (delirium), breathing issues, or unexplained pain.

How can I tell if my loved one is in pain if they cannot communicate it?

Since people with dementia may not verbally express pain, it's important to watch for non-verbal cues. These can include grimacing, moaning, groaning, clenching teeth, increased agitation, unusual posture, or refusing to eat. A sudden, unexplained change in behavior is a major red flag.

What role does delirium play in dementia care?

Delirium is a sudden, severe confusional state often triggered by an underlying illness, like an infection, dehydration, or medication issue. For a dementia patient, delirium can be a critical sign of a medical problem that requires immediate diagnosis and treatment at a hospital.

Is aggressive behavior always a reason for hospitalization?

No, aggressive behavior is not always a reason for hospitalization. If the behavior poses an immediate physical threat to the patient or others, call 911. If it is distressing but not immediately dangerous, the patient's doctor should be consulted to investigate the cause, which may be due to pain, medication side effects, or environmental triggers.

How can caregivers prepare for a possible hospital visit?

Caregivers should prepare an emergency folder containing a list of medications, advance directives, healthcare provider information, and a personal information sheet detailing patient routines and communication needs. Packing a small bag with comforting personal items can also help ease the transition.

Can I prevent a hospital visit for a dementia patient?

While not all hospitalizations are preventable, proactive management of chronic conditions, prompt attention to new symptoms, caregiver education, and considering alternatives like home health services or palliative care can help reduce the frequency of trips to the hospital.

What are alternatives to hospital admission for a dementia patient?

Depending on the situation, alternatives to hospital admission could include management at home with increased support from home health agencies, respite care for caregiver relief, or hospice care focused on comfort and symptom management for those in advanced stages.