One in three Americans will be diagnosed with dementia, a general term that describes the progressive loss of language and other skills severe enough to interfere with daily life. While each person’s experience with dementia is unique, certain challenges often arise as the condition progresses. It is important to understand what to expect in the later stages of the disease and how to prepare if you are facing dementia or care about someone who is.

Care Options and Planning Ahead

In the final months of life, people with dementia often receive invasive medical interventions that offer no clear benefit and are not consistent with the care most people say they want. This is one reason why it is vital in the earlier stages of dementia to reflect on, discuss, and document one’s wishes and goals for future healthcare.

Healthcare wishes can be recorded in an advance directive. A dementia directive can also be created using Compassion & Choices’ Dementia Values and Priorities Tool. This is an addendum to an advance directive that addresses the unique issues that can arise with dementia. Once these documents are created, share and discuss them with caregivers and healthcare providers, and ensure they are added to medical records.

As dementia progresses and 24-hour assistance is required, many people explore options for additional support. This can include private caregivers and adult day care programs as well as residential settings such as memory care or nursing facilities. It can be helpful to consider these different options in advance, research care providers and facilities in your area, and visit with or interview them over the phone. 

Two care options that can be an especially good fit for people with dementia include home-based primary care and hospice care:

• Home-based primary care supports high-risk, medically vulnerable patients. It can be a great option for those with dementia because it often becomes increasingly hard for people to get out of the home and access medical care as their condition progresses. Many people also prefer to remain at home as they age, which this option helps achieve.
• Hospice care can be very helpful for people with dementia, but it requires meeting specific criteria to qualify for it. Hospice also requires a patient to have a prognosis of six months or less to live, which can be hard to predict with dementia. As a result, only 12% of Americans with dementia ever enroll in hospice. That said, it is worth discussing this option with healthcare providers.

End-Stage Dementia

By the final stage of dementia — also called severe, advanced, or late-stage dementia — the condition will significantly impact a person’s life and often necessitates constant care. People at this stage typically cannot communicate verbally, underscoring the importance of documenting one’s healthcare wishes in advance.

These symptoms can understandably be frustrating for people with dementia and can lead to “neuropsychiatric behaviors” such as agitation, depression, apathy, delusions, hallucinations, and sleep impairment. Decreased communication abilities also mean that caregivers often have to learn how to recognize nonverbal cues to gauge how someone is doing, what they may need, and whether they are experiencing pain or discomfort.

As experts Dr. Susan Wilhoit and Dr. Natalie Young discussed in a Compassion & Choices webinar on this topic, dementia is not just a disorder of the brain but also one that affects the entire body. Toward the later stages of dementia, people are typically weaker, they may have trouble controlling their bowel and bladder, and they often spend the majority of the day in bed. The body will also become more vulnerable to infections such as aspiration pneumonia, or “silent choking,” and recurrent urinary tract infections (UTIs).

Due to these challenges, people with late-stage dementia will need more assistance managing pain and discomfort as well as doing physical tasks like going to the bathroom, eating, and getting out of bed.

Dying With Dementia

It can often be difficult to know when someone with dementia is nearing the end of their life. Damage to the brain will continue as the disease progresses, decreasing one’s ability to function, communicate, move, eat, drink, and manage other daily tasks and interactions. As the end nears, many will continue to decline in this way.

On this note, geriatrician and palliative care physician Dr. Natalie Young shares: “The most common thing that happens in my experience is that the person spends more and more time sleeping — their eyes are closed, they’re not communicating, they’re not waking up to eat or not eating as much, and not urinating as much. Ultimately, they just kind of remain in bed, asleep, for the rest of their life.”

There are also common infections that arise with late-stage dementia that can lead to death. As mentioned, aspiration pneumonia and recurrent UTIs are two frequent conditions. In fact, pneumonia is the most common cause of death in people with dementia. For people with dementia, UTIs often cause subtle changes in behavior, cognition, and level of awareness. They can cause agitation, restlessness, sleepiness, and decreased appetite and engagement.

Medical complications like this can lead to frequent hospital visits, 40% of which are considered avoidable. Over half of adults with dementia also visit the emergency room at least once within the last month of their life. Going to the hospital can be distressing and counterproductive for people with advanced dementia, which is why many medical providers encourage people to avoid doing so when possible. This reality underscores the importance of discussing one’s healthcare goals and wishes well in advance so that caregivers are empowered to make decisions that align with what their loved one would have wanted.

Having an idea of what to expect in the later stages of dementia and the dying process can equip you to prepare for and discuss the type of care and end-of-life experience you want. 

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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