Is Dementia a Terminal Illness?

When I was setting up the structure for my blogs, I felt strongly about including dementia as a main topic but realized that people might wonder why a Death Doula is talking about dementia.

Most people don’t think of dementia  – in all its forms – as a terminal illness. 

As a Certified Death Doula, I have many clients with dementia. As death doulas, we know that people with dementia are nearing the end of life when there is a decline in not only cognitive function but physical function as well. There are many kinds of dementia, including but not limited to:

• Alzheimer’s Disease
• Vascular Dementia
• Lewy Body Dementia
• Frontotemporal Dementia
• Korsakoff Dementia

Dementia’s Common Elements at End-of-Life

While there are many types of dementia, the severe symptoms of the last stages of the disease have many commonalities and can include:

• almost no moments of cognitive clarity and not making sense when talking (word salad),
• loss of mobility – confined to a wheelchair or bedbound
• not able to recognize loved ones
• difficulty swallowing and decreased food intake
• lack of facial expressions
• loss of continence. 

As we can see, the symptoms of dementia are not conducive to sustaining life. A person with dementia may not die directly from dementia but rather ‘with’ dementia. Meaning they may die from another medical condition, for example, cancer or heart disease. They may also have infections and minor illnesses on top of these ongoing conditions.

 Let’s have some examples:

• If someone loses the ability to swallow because of their dementia, they may develop aspirating pneumonia, which leads to their death. 
• A person with dementia suffers a fall because of the degeneration of the brain. The fall results in a broken hip, which leads to death. 

In the first study to rigorously describe the clinical course of advanced dementia, a leading cause of death among Americans, researchers in the US concluded that dementia is a terminal illness and is insufficiently recognized as such, resulting in many patients not receiving the palliative care that aims to improve the comfort of the terminally ill.*

Changing Philosophy Towards End-of-Life Care

As dementia is now more widely recognized as a terminal illness, the way that we care for our loved ones with dementia is changing. This includes changes to care pathways and even funding pathways – for example, being eligible for a benefit or subsidy for palliative nursing care in the home. If dementia patients are treated palliatively, they are more likely to receive medical measures that provide comfort and ease pain, and not medical interventions that may be more aggressive but provide very little benefit for the person.

In this blog series, I will focus on caring for people with dementia, especially at the end of life, coping with new or uncomfortable behaviours, tips for transitioning to memory care or even remaining at home, and available resources.