10 Signs Death is Near in Dementia: What Caregivers and Families Need to Know

Caring for a loved one with dementia is an emotional and challenging journey, especially as they approach the final stages of life. Understanding the signs that indicate the end of life is near can help families and caregivers prepare, provide comfort, and make informed decisions about care.

Dementia is a progressive disease, and while each person’s experience is unique, there are common indicators that death may be near.

Whether you are the one who is suffering, or your friend and family member is dealing with this disease, you need to understand these signs and prepare yourself to deal with them.

Understanding Late-Stage Dementia

Dementia is a life-limiting condition that gradually impacts memory, thinking, and physical abilities. In late-stage dementia, individuals lose the ability to perform basic tasks, such as eating, speaking, and moving. They require full-time care, often in a skilled nursing facility, hospice, or at home with caregivers.

A commonly used tool to measure the progression of dementia is the Functional Assessment Staging Test (FAST Scale Dementia).

This scale helps caregivers understand where their loved one is in the disease’s trajectory. When a person reaches stage 7 on the FAST scale, they are in the final stage of dementia, where death may occur within months.

10 Signs Death is Near in Dementia

1. Increased Frailty and Weakness

As the body shuts down, your loved one may become extremely frail. Their muscles weaken, making it difficult to move, sit up, or hold their head up. Caregivers may notice that even small movements take a lot of effort.

2. Severe Weight Loss and Malnutrition

People with late-stage dementia often struggle with eating and drinking. They may lose interest in food or be unable to swallow safely, leading to significant weight loss and malnutrition. Some families use a pharmacy discount card or a Rx prescription discount card to help cover the costs of nutritional supplements or appetite stimulants, though medical advice is always recommended before making any dietary changes.

3. Difficulty Swallowing (Dysphagia)

One of the most common complications in advanced dementia is trouble swallowing, increasing the risk of aspiration pneumonia. Food and liquids may go into the lungs instead of the stomach, causing infections. Families may need to consider soft foods, thickened liquids, or alternative feeding options.

4. Increased Sleeping and Unresponsiveness

As the body begins to shut down, your loved one may sleep much more and become less responsive. They might seem unaware of their surroundings and less engaged with people and activities. It’s important to provide comfort by speaking softly, playing their favorite music, or simply holding their hand.

5. Urinary and Bowel Incontinence

Incontinence is common in late-stage dementia, and caregivers must ensure proper hygiene to prevent infections like urine infections and dementia-related complications. Incontinence care products can be expensive, but a free Rx discount card like WiseRX^® card may help lower the cost of necessary supplies.

6. Frequent Infections and Hospitalizations

People with late-stage dementia have weakened immune systems, making them more susceptible to infections like pneumonia and urinary tract infections (UTIs). UTIs can worsen confusion and lead to hospitalization. Understanding ICD-10 codes for dementia and related conditions can help families work with medical professionals to navigate care and treatment.

7. Changes in Breathing Patterns

In the final days or hours, a person’s breathing may become irregular. Some may experience long pauses between breaths (Cheyne-Stokes respiration), while others develop a rattling sound known as the “death rattle” due to fluid buildup in the throat.

8. Skin Changes and Poor Circulation

As circulation decreases, hands, feet, and even the face may feel cold to the touch or take on a bluish-purple tint. Pressure ulcers (bedsores) may also develop due to immobility, so certified dementia practitioners should support them and use proper repositioning techniques that are essential for comfort.

9. Loss of Speech and Facial Expressions

Communication becomes increasingly difficult, and eventually, verbal abilities are lost entirely. Your loved one may no longer be able to express pain or emotions through words or facial expressions. Non-verbal cues, such as body tension or restlessness, may indicate discomfort.

10. Emotional Withdrawal and End-of-Life Agitation

Some individuals become withdrawn, avoiding eye contact and interaction, while others may experience restlessness or agitation. This can be distressing for families, but hospice or palliative care teams can help manage symptoms with medications and support.

Managing End-of-Life Dementia Care

Caring for a loved one with late-stage dementia is one of the hardest journeys a family can face. You want to provide comfort, dignity, and peace, but it can be overwhelming to know where to start.

The final stages of dementia come with unique challenges—physical decline, communication barriers, and emotional exhaustion. But with the right approach, you can ensure your loved one’s last days are filled with care and compassion.

1. Hospice and Palliative Care: Focus On Comfort Over Cure

At this stage, aggressive medical interventions often do more harm than good. Hospice and palliative care services focus on pain relief, symptom management, and emotional support.

If you haven’t already, consider enrolling your loved one in a hospice program. Hospice nurses and caregivers specialize in end-of-life care, helping you navigate this difficult time with expert guidance.

Palliative care, on the other hand, can be started much earlier in the disease process. It works alongside your loved one’s existing care team to improve comfort and quality of life.

Whether it’s managing pain, reducing anxiety, or ensuring proper hydration, these services prioritize dignity over medical interventions that may not improve outcomes.

2. Medical Equipment and Dementia Medications:

As dementia progresses, your loved one may need medical equipment such as hospital beds, oxygen tanks, mobility aids, and feeding assistance. These items can be expensive, and many families worry about affording the best care. Additionally, pain relief, sedatives, and other essential medications may be required to ease distress.

Saving on Dementia Medication Costs: Prescription Discount Cards:

If you’re concerned about high medication expenses, a pharmacy discount card such as the WiseRX^® card can really help. These cards offer significant savings on prescription drugs and are widely accepted at pharmacies..

The WiseRX^® card is easy to use—just present it at your local pharmacy to save up to 85% on medications.

3. Advanced Directives and Care Planning: Respecting Their Wishes

Talking about end-of-life care is never easy, but it’s one of the most important conversations you can have. If your loved one can still communicate their wishes, now is the time to discuss their preferences regarding life support, feeding tubes, and resuscitation.

If these discussions weren’t had earlier, don’t feel guilty—focus on what you believe would bring them the most comfort. Work with their healthcare team to ensure care aligns with their values. A certified dementia practitioner can also guide you through these decisions, providing clarity on options available.

4. Emotional and Spiritual Support: Caring for the Caregiver

Watching someone you love fade away is emotionally draining. You may feel helpless, exhausted, or even guilty for struggling. It’s okay to grieve while they’re still here.

Caregiver burnout is real, and finding support is crucial. Joining a support group, speaking with a counselor, or leaning on faith-based services can provide strength. You are not alone in this. Many families have walked this path before you, and their experiences can offer comfort and wisdom.

At the heart of end-of-life dementia care is love. Your presence, your voice, and your touch provide more comfort than you realize. Even if your loved one no longer responds, they may still feel your warmth.

Continue to speak to them, hold their hand, and play their favorite music. These small acts of love can make all the difference in their final days.

The Final Moments: What to Expect in Dementia

As your loved one nears the end of their journey, their body will begin to shut down. This process is natural, but it can be difficult to witness.

Knowing what to expect can help you provide comfort and reassurance during these final moments.

Physical Signs of Approaching Death in Dementia:

• Their skin may feel cool to the touch, especially on the hands and feet, and you may notice a mottled or bluish appearance. This happens as circulation slows down.
• Breathing may become irregular, with long pauses between breaths or a gasping pattern known as Cheyne-Stokes breathing. While it may seem distressing, your loved one is not in pain.
• They will become completely unresponsive, unable to wake or react to touch, sound, or light. Even though they are not responding, they may still hear you.
• Their eyes may remain partially open, and there may be little to no movement.

How to Provide Comfort:

• Sit with them, hold their hand, and speak softly. Share comforting words, play soft music, or simply be present.
• Keep the room peaceful—dim the lights, minimize noise, and ensure they are warm and comfortable.
• Use lip balm or a damp cloth to moisten their lips if they appear dry.
• Even if they don’t respond, your presence matters. Your voice, your touch, and your love provide a sense of peace in their final moments.

This is a sacred time. Being there, offering love and comfort, is the greatest gift you can give. Let them know they are not alone.

FAQ’s About End-of-Life Dementia Care

      1. How can I ensure my loved one is comfortable in the final stages of dementia?

Provide gentle care, keep them hydrated, adjust their position frequently, and consult hospice professionals for pain management.

      2. What is the risk of dementia when taking Flomax?

Flomax (used for prostate issues) has been linked to an increased risk of cognitive impairment in some cases. If you’re concerned, discuss alternative medications with a healthcare provider.

       3. Can dementia be diagnosed in children?

Yes, childhood dementia exists but is rare. It is usually associated with genetic conditions affecting brain function.

       4. What is the ICD-10 code for dementia?

The ICD-10 code for dementia varies depending on the type. The general code is 90, but more specific codes exist for Alzheimer’s and other forms.

        5. How does fast-scale dementia progress?

The FAST scale (Functional Assessment Staging Tool) helps measure the severity of dementia. Stage 7 indicates late-stage dementia, where individuals lose motor skills and communication abilities.

        6. What if I face high medication costs?

With the right support, medication management, and financial planning, you can focus on what matters most— love, comfort, and dignity in the final days.