10 Signs Death Is Near: Dementia Caregiver Guide

Preparing for the death of a loved one with dementia can feel stressful and scary. As your care recipient’s dementia progresses, you may worry about symptoms, what death will look like, and how to prepare. You may have even found yourself beginning to type “10 signs death is near dementia” or “palliative care dementia” into the search bar, only to hit “backspace” because you’re worried about what you’ll find. 

Feeling fear or anxiety about end of life care and the dying process is normal. At Trualta, we’re here to support caregivers through the disease process, from risk factors to dementia diagnosis to end of life preparation. Check if you have free access. 

In this article, we’ll review:

• Symptoms of late stage dementia.
• Signs your loved one may be nearing the end of life.
• How you can get support with end of life care.

What Is Late Stage Dementia?

Whether your care recipient has frontotemporal dementia, vascular dementia, Lewy body dementia, or Alzheimer’s disease, they will likely start to enter the dying process once their condition has progressed to late stage dementia. You may also hear it called “advanced dementia” or “end stage dementia”. 

While these types of dementia have different characteristics from one another, they will all experience a decline in everyday functioning once they’ve reached late stage dementia. At this advanced dementia stage, your loved one’s condition may worsen over several months. 

You might notice them:

• Having trouble sitting up, standing, and walking without assistance. They may spend more of their time in bed.
• Talking less, or using only single words at a time. Their words or phrases may not make sense.
• Having difficulty understanding what others say to them.
• Needing more help with daily activities or constant caregiver assistance.
• Experiencing bladder and bowel incontinence.
• Seeming unaware of their surroundings.
• Showing fewer facial expressions (or none at all).

10 Early Signs To Look For

Many of the advanced dementia symptoms above can pose a risk of death. For example, spending most of their time in bed can increase risk factors for blood clots or infections from pressure sores. 

Because every person’s dementia symptoms, health, and dementia care situation are different, it’s hard to predict life expectancy with the disease. As a caregiver or family member of a dementia patient, this uncertainty can be hard to deal with. 

Here are 10 early signs that your care recipient may be approaching death:

1. Sleeping more. 
2. Not speaking at all.
3. Not showing any facial expressions.
4. Not moving around as much (or only doing so with help).
5. Having trouble swallowing.
6. Having difficulty eating and drinking. They may be eating less.
7. Becoming more frail. 
8. Falling more frequently. 
9. Experiencing more frequent infections. For example, urinary tract infections (UTI) or pneumonia.
10. Being more likely to need urgent medical attention.

It’s important to remember that just because your care recipient shows these signs, it doesn’t always mean that death is near. In some cases, people live for several months once they start showing symptoms like these. In other cases, the person may die before reaching late stage dementia if they have other health conditions.

Getting Support

While preparing for the end of life can be stressful, there are healthcare professionals who can support you and your care recipient:

• A hospice care team can provide palliative care to reduce your loved one’s symptoms and make them more comfortable. They can also provide medical equipment, respite care, dietary counseling, and therapies. They can also connect caregivers with support resources. 
• A memory care unit at a skilled nursing facility specializes in caring for people with dementia. They can help with personal care tasks for your loved one, as well as help with activities of daily living like bathing, dressing, and mobility.

Trualta’s end of life care resources can help you prepare for the death of a loved one. Check if you have access to our evidence-based educational tools, which can provide support with:

• End of life care planning.
• Managing your loved one’s symptoms and daily activities.
• Making the best use of hospice care.
• Preparing for the moment of death. 
• Life after a loved one dies.

References

1. Morrow, A. (2024, November 7). 10 signs death is near when a person has dementia. VeryWell Health. 
2. Alzheimer’s Research Association (2023, August 17). How to tell when a person with dementia is nearing the end of their life.
3. Alzheimer’s Society (n.d.) How to know when a person with dementia is nearing the end of their life.