What Happens In The Last Stages Of Dementia? Symptoms, Challenges, And Care Needs

With a few rare exceptions, dementia is a progressive and incurable illness, with symptoms growing worse until the end of the affected individual’s life. Thinking about the later stages of this process may be distressing, especially if you have a loved one who has been diagnosed with dementia. However, knowing what to expect may make it easier to plan for their care and mentally prepare yourself for the difficulties involved. 

In the last stages of dementia, a patient’s cognitive decline may have advanced to the point that they’re unaware of their surroundings and have little or no ability to communicate. They may be unable to move or perform basic self-care tasks, and they might have difficulty with physical functions like swallowing. People in the final stage of dementia often require 24-hour supervision to ensure their safety. Many family members opt for palliative care at this point to maximize their loved one’s comfort. 

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Does dementia always get worse?

Dementia is considered to be a terminal disease. Although this type of illness might not directly cause a patient’s death, it typically gets worse rather than better over time, and many people with dementia die from related complications. For example, impaired swallowing reflexes caused by dementia can cause patients to aspirate food and develop fatal pneumonia. 

Dementia symptoms generally increase in severity until the end of the affected individual’s life. Some interventions may be able to slow the progress of dementia, but they generally cannot reverse or halt it. A few rare causes of dementia—such as autoimmune disorders or an excess of cerebrospinal fluid—may be curable. However, research suggests that at least 99% of dementia cases are caused by conditions with no known cures.

Life expectancy for individuals with dementia

Though dementia is considered a life-limiting condition, estimates vary concerning expected survival time. Recent studies suggest that the median time between a patient’s diagnosis and their death is around five years, though this may depend somewhat on how early the signs of the disorder are recognized. Some people with this illness may live considerably longer than average; survival for 15-20 years after diagnosis is not unheard of with Alzheimer’s disease.

The prognosis may also vary depending on what type of dementia an individual has. A 2021 research review gives the following estimates for average survival time:

• Alzheimer’s disease: 5.5–9.7 years from disease onset, 3.8–7.8 years from diagnosis
• Vascular dementia: 5.3–7.7 years from onset, 1.8–4.6 years from diagnosis
• Lewy body dementia: 4.3–9.2 years from onset, 2.9–6.5 years from diagnosis
• Frontotemporal dementia: 4.7–10.5 years from onset, 2.7–7.1 years from diagnosis

Various other risk factors and disease markers may influence an affected individual’s life expectancy. For example, people who develop dementia at a younger age are likely to survive longer, though they may experience a greater proportional reduction in lifespan. 

When do most people reach the late stages of dementia?

Predicting the speed of dementia progression can be very difficult. It may be influenced by a variety of factors such as dementia subtype, eating habits, level of physical activity, and participation in cognitively stimulating activities. That said, it may be possible to make some very rough estimates about how long each stage is likely to last. 

According to the Alzheimer's Society:

• The early stage of dementia typically lasts around two years. 
• The middle stage usually lasts about two to four years.
• The late stage generally lasts no longer than one or two years.

It’s also not always easy to define exactly when someone has transitioned from one stage to the other. It’s typically a judgment call that’s made based on the severity of the person’s cognitive condition. For instance, symptoms such as memory loss, disorientation, mood instability, and difficulty with speech and language tend to get gradually worse over the course of the illness.

What are the symptoms of late-stage dementia?

The Alzheimer’s Association reports that the later stages of Alzheimer’s disease in particular are typically marked by:

• Inability to communicate. The person may only be able to use a handful of words or phrases, and their verbalizations are often incoherent. Someone who speaks more than one language may revert to their native tongue exclusively.
• Lack of awareness of time and place. The person may not know where they are or recognize anyone around them, even when visited by family members or close friends. They may not appear to remember events that occurred even a few minutes ago.
• Physical difficulties. The person will typically be unable to move around on their own, control their urination and defecation, or complete basic tasks such as dressing or feeding themselves. In time, they may not be able to sit up on their own, regulate their breathing, or swallow food properly.
• Need for full-time care. The person will typically need to be monitored around the clock to avoid dangers like suffocation, choking, or falling out of bed. 

People in the late stages of dementia typically can’t perform self-care tasks like cleaning themselves or going to the bathroom. They often can’t effectively communicate pain or distress—and even their facial expressions may be limited due to diminished muscle control. As a result, they can be vulnerable to physical symptoms such as:

• Bedsores and ulcers
• Infected cuts
• Rapid weight loss
• Dehydration
• Pneumonia and other lung infections
• Urinary tract infections

The end stage of dementia can also involve significant psychological distress. Although those affected may not be able to express their feelings effectively, agitation and signs of pain are common. Individuals at this stage may also experience severe fear, confusion, anxiety, and anger.

How to tell when someone with dementia may be nearing the end of their life

Clinicians often track a person’s progress through the end stages of dementia using a scale called the Functional Assessment Staging Tool (FAST). This method uses specific markers of symptom severity as indicators of the advancement of dementia. End-stage dementia corresponds to Level 7 on the FAST scale, which has several sub-levels:

1. Speech limited to six words or less
2. Speech limited to one word or less
3. Inability to walk
4. Inability to sit up unassisted
5. Inability to smile
6. Inability to hold head up unassisted

Predicting exactly how long someone will survive with dementia, even with the aid of the FAST scale, is still difficult to do with precision. However, a 2019 paper reports that patients who reached sub-level C or higher typically survived for an average of 3.2 months.

End-of-life care for people with dementia

Since there’s no known cure for dementia, care in the late stages typically focuses on maintaining the affected individual’s general health and comfort. This often involves taking care of basic daily needs that the person can’t handle themselves, such as feeding, cleaning, and moving them. Health indicators such as weight, dental health, and skin health may need to be carefully monitored.

Although people in the advanced stages of dementia may require skilled nursing care, they may also benefit from receiving some personal care from family members or close friends. If you have a loved one with this condition, your visits may help reduce their psychological distress. Even if they’re not able to converse with you, they might enjoy things like:

• Holding your hand
• Listening to music or nature sounds together
• Hearing you read to them
• Receiving a massage

You may get the most positive reactions if you make sure to approach the person from the front and identify yourself at the start of the interaction. Using simple, direct sentences and speaking in a calm tone of voice may reduce their confusion and agitation.

Palliative care for dementia

Many healthcare professionals recommend hospice or palliative care for people with advanced dementia. These approaches focus on supporting the person’s quality of life during their final weeks, months, or years rather than seeking to extend their lifespan by any means available. According to a research review in the New England Journal of Medicine, efforts to keep patients alive longer in late-stage dementia are often ineffective and distressing, and affected individuals may be better served by care designed to increase their comfort.

Here are a few examples of palliative care strategies for end-stage dementia:

• Managing agitation with soothing speech, music, and activities rather than antipsychotic medication
• Hand-feeding rather than using a feeding tube
• Treating pain with a combination of appropriate medication and non-pharmacologic treatments like massages, heat, and relaxation techniques
• Providing calming and comfortable surroundings in which the person can approach the end of life with dignity

Planning ahead and making arrangements such as advanced care directives may help you ensure that your spouse, relative, or friend with dementia receives the right care for them. 

Self-care for caregivers supporting those with advanced dementia

Seeing someone you care for nearing the end of their life due to a major neurocognitive disorder can be an emotionally difficult experience. Studies suggest that anxiety, depression, and complicated grief are common among family members of people with advanced dementia. That’s why caregivers and loved ones may want to consider getting help and support from a mental health professional.

It may not be easy to make time to seek mental health care for yourself, especially when you’re assisting a loved one through a severe terminal illness. Online therapy may be a more convenient option in this type of situation. Therapists who provide care over the internet can often provide more flexibility in scheduling, and it may be easier to fit sessions in when you can attend them remotely instead of having to commute to a provider’s office.

Studies on virtual mental health care indicate that it may be a helpful form of support for people affected by dementia and those close to them. For example, one comprehensive review from 2022 suggests that internet-delivered care was among the most effective forms of cognitive behavioral therapy for family caregivers of individuals with dementia.

Takeaway

The final stages of dementia are marked by profound disability, including limited or nonexistent speech and an inability to perform almost any actions independently. This is usually the shortest phase of dementia, but it can be very distressing for patients, family members, and caregivers. Palliative care may be the most effective way to support the patient’s comfort and quality of life during this time. Seeking support from a mental health care professional can be helpful for family members and caregivers during this stage.