A growing number of older adults in the United States are living with dementia, a general term for changes in the brain that affect language, thinking, memory, decision-making, and behavior. 

In the early stages of dementia, which can last years, symptoms may be noticeable but often do not greatly interfere with daily life. In fact, for those with Alzheimer’s disease — the most common form of dementia — changes in the brain are thought to begin 20 or more years before symptoms start. 

Although experiences with dementia vary, becoming familiar with prevalent symptoms and complications is helpful for knowing what to expect and how to plan for the future. That’s why we’ve created this blog series to equip you with the knowledge and resources you need. Discover three ways you can prepare for dementia today and gain insight into the process of living and dying with end-stage dementia. Plus, read on to learn more about medical complications that are common with advanced dementia and how they can be addressed.

1. Recurrent Urinary Tract Infections

Recurrent urinary tract infections (UTIs) are a frequent condition for people living with dementia, especially among women. When it comes to dementia, UTIs can cause sudden, unexplained, and often severe changes in behavior, cognition, and level of awareness (also known as “delirium”). 

There can be a wide range of symptoms for a UTI, but since a person with dementia may not be able to clearly communicate how they feel, catching the infection early can be challenging. Oral antibiotics are typically effective in treating UTIs, but if the infection is severe, it can cause life-threatening complications and could require hospitalization.

2. Dysphagia: Difficulty Swallowing

Another common issue with advanced dementia is dysphagia, or difficulty swallowing. The physical ability to swallow requires the coordination of many complex muscles and nerves, and can become impaired as dementia progresses. Difficulty swallowing impacts one’s hydration and nutrition, leading to physical weakness and decreased functional ability. 

Coughing, choking, gagging, or gurgling when eating or drinking can all be signs of dysphagia. Food coming back up, sometimes through the nose, is another indicator that someone may be experiencing dysphagia.

There are a variety of techniques to address swallowing issues, including tucking the chin while swallowing; eating small amounts at a time; avoiding harder, crunchy foods; and avoiding water — as it is the hardest thing to swallow. Altering the consistency of the food can also be helpful to increase someone’s intake, such as by softening foods or thickening liquids. Additionally, if someone is only able to eat a few bites at a time, it’s important to make each of those bites as nutritionally dense as possible.

Careful hand feeding is one of the most effective interventions for dysphagia, though it can be time-intensive and requires patience from caregivers. Hand feeding involves bringing food to a person’s mouth, usually with a spoon.As an aside, feeding tubes are not recommended for people with dementia, as they tend not to improve outcomes around nutrition, quality of life, and weight gain or stabilization. In the final stages of dementia, people typically don’t remember why they have a feeding tube. It can cause agitation, and they may try to pull it out, which can cause infections and other challenges.

3. Aspiration Pneumonia, or “Silent Choking”

Relatedly, difficulty swallowing can lead to aspiration pneumonia — an infection caused by food, saliva, mucus, or any liquid going down the throat and into the lungs instead of being properly swallowed. This is a leading cause of hospitalization and death for people with dementia.

Aspiration pneumonia can be treated with oral antibiotics at home if it is identified early. Some people may also recover on their own if their immune system is strong enough to fight off the infection. For those that wish to pursue more aggressive treatment, going to the hospital for IV antibiotics or supplemental oxygen can help clear the infection. That said, being at the hospital can be particularly disorienting and distressing for people in the final stages of dementia.

Deciding If and When to Go to the Hospital

The decision to go to the hospital can be fraught when caring for someone with dementia. In the final months of life, people with dementia often receive aggressive medical interventions that offer no clear benefit and are not consistent with the care most people say they want. As mentioned, going to the hospital can also be counterproductive.

Going to the hospital means being in an unfamiliar environment, having one’s routine disrupted, and being woken up throughout the night — all of which worsen the symptoms of dementia. This can cause “delirium,” an acute state where someone becomes confused and disoriented. While some with delirium may become more tired, others grow more agitated. It is important to weigh these concerns with the potential benefits of going to the hospital. 

Further, the decision does not need to be between either going to the hospital or suffering at home. Even if someone prioritizes staying at home, there are still ways their medical team can support them and minimize pain and distress. Palliative care, hospice care, and home-based primary care are three options for receiving care and support at home or in a more peaceful environment.

This is one reason why it is crucial in the earlier stages of dementia to thoughtfully reflect on, discuss, and document wishes for future healthcare. A great place to start is by completing a dementia directive, an addendum to an advance directive. By clearly documenting one’s wishes, values, and priorities in advance, caregivers and healthcare providers are better equipped to support someone as their dementia progresses.

This blog post draws from Compassion & Choices’ webinar “As the End Nears: Dying With Dementia” featuring geriatrician and palliative care physician Dr. Natalie Young and Compassion & Choices’ Medical Director Dr. Susan Wilhoit. You can find additional information and resources related to dementia here.

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