End stage dementia: Care, support, and more

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End stage dementia is the last stage of dementia. Every type of dementia is different and causes different symptoms. The number of stages and the way they manifest may also vary.

However, the end stage of dementia is similar across all forms of the condition. This is because, at this late stage, significant and permanent brain damage has occurred. People usually need help with basic functions such as staying awake or holding their head up. They may also have psychiatric symptoms such as hallucinations.

End stage dementia means that death is drawing closer. The length of this stage varies from person to person, but most people live for only a year or two.

Types of dementia

Researchers have identified more than 100 causes of dementia. Some of the most common are:

• Alzheimer’s disease: The most common and best-known cause of dementia, this disease affects memory first. As it progresses, it undermines basic functions and is eventually fatal.
• Vascular dementia: This form of dementia occurs because of damage to the blood vessels that supply the brain. The symptoms vary depending on which part of the brain is affected, but a person may have trouble with memory and basic functions. As the disease progresses, symptoms get worse.
• Frontotemporal dementia: This type of dementia tends to affect behavior and mood first. Symptoms such as memory loss appear later.
• Lewy body dementia: This type of dementia causes harmful deposits in the brain. Its symptoms are similar to those of other brain diseases at first and may include behavior changes. As it progresses, it damages basic functions and is eventually fatal. Hallucinations are common.

Read more about dementia and its causes here.

The symptoms of end stage dementia can vary and shift. In general, they include:

• significant difficulties with activities of daily living, such as eating, bathing, and dressing
• communication difficulties, sometimes including the loss of speech or an inability to understand speech
• trouble with movement, potentially including an inability to walk, sit up, or hold one’s head up
• difficulty swallowing
• hallucinations, which may cause agitation or behavior changes

Each form of dementia is slightly different, with its own set of symptoms and stages. In general, though, dementia has three stages: early, middle, and late.

Early stage

During the early stages, a person may have mild to moderate issues with thinking and daily functioning. For example, a person with Alzheimer’s disease may have problems with short-term memory, while a person with frontotemporal dementia may have behavior or personality changes or difficulties with speech.

Middle stage

The middle stages often cause more dramatic losses of function. A person may experience incontinence, have trouble with activities of daily living, or need daily support.

End stage

In the end stage, a person may have significant and severe disabilities. They may need assistance with movement, eating, and communication. They may act confused or agitated or not recognize loved ones.

Read more about the progression, stages, and life expectancy of dementia here.

Dementia is a group of conditions that cause steady, progressive damage to the brain, affecting thinking, memory, and other basic functions.

Dementia has many forms and causes, and researchers still do not fully understand the causes or risk factors. Genetic and lifestyle factors may play a role.

Possible causes of dementia include:

• cardiovascular disease, which may cause vascular dementia
• the accumulation of harmful substances in the brain, such as tau proteins, which may cause frontotemporal dementia, or amyloid plaques, which may cause Alzheimer’s disease
• alcohol misuse
• inherited genetic syndromes such as Huntington’s disease

Although there is no cure for dementia, medications may help reduce symptoms and slow the progression of the disease in the early stages. By the late stages, management usually shifts toward reducing symptoms and keeping the person comfortable.

These management decisions can be difficult, as different people have different values. For example, some caregivers may choose not to give a person antibiotics for an infection in the late stages of dementia. This will hasten death but may reduce pain.

Caregivers may also choose to avoid painful tests or medical visits that are likely to be stressful for the person with dementia. The line of thinking may be that dementia is a terminal illness and that screening for other terminal illnesses may be pointless, especially for someone who resists these screenings or does not understand what is happening.

Some treatments may help with symptoms, including:

• Medication: Medications may help with hallucinations, anxiety, or agitation. Talk with a doctor about anti-anxiety medications or antipsychotics.
• Supportive care and pain relief: Pain medication may help with pain in late stage dementia. Supportive care might include spoon-feeding the person and ensuring that they drink enough water.
• Comfort measures: Many things can comfort a person nearing the end of life. Music, familiar settings, a routine, beloved pets, and time with family may help. Some people prefer to stay at home and avoid dying in a hospital. Hospice care can offer relief and help caregivers make decisions about comfort care.
• Support devices: Some people find that a walker, shower bars, and other devices make movement easier.

In the late stages of dementia, a person may have very little awareness. They may not know what is going on around them or be able to articulate their wishes. People with a recent dementia diagnosis should consider developing a plan now for the later stages of dementia.

Some things to focus on include:

• Financial planning: A person may need to choose someone to tend to their financial affairs. It can also be helpful to meet with a lawyer to ensure that a person’s assets have the right protection.
• Caregiving: Questions to consider include what care needs the person has and where they would most like to receive care. Discussing these questions with loved ones and identifying preferred caregivers may offer peace of mind.
• Values: Some people want to live as long as possible, even if they have a poor quality of life. Others have specific religious or spiritual mandates surrounding end-of-life care. And some prefer a shorter but more comfortable life. Discuss these values, including whether a person wants to receive a feeding tube or antibiotics for infections in the late stages.
• Desires for the late stage of dementia: A person should consider what is most important to them. This may include listening to their favorite music, spending time outside, or being included in family functions. Developing a care plan now can help loved ones honor the person’s values and needs.
• Maximizing enjoyment: Because dementia is fatal, a person’s goals may shift toward enjoying their life rather than optimizing health. Discuss these preferences with a loved one. For example, the person may want to eat the foods they like, even if doing so causes weight gain or is a risk factor for other diseases.

People in end stage dementia may need constant care. This can be exhausting and challenging for family members. These strategies may help:

• Get support, including finding a therapist or joining a local caregiver support group.
• Practice good self-care. No one can single-handedly provide all the care another person needs. Making an effort to sleep daily, eat nutritious foods, and exercise may help a person provide good care to their loved one.
• Enroll in a hospice program or look into palliative care. Both center on the needs, comfort, and values of the person with dementia and can offer insight and support.
• Consider the person’s values, such as what would be most important to them at this time and how people can honor their needs.
• Embrace comfort strategies that worked at other stages of life. Play the person’s favorite music or ask loved ones to visit. Give them a massage or access to their favorite show.
• Talk with the person. Even if they do not understand, hearing a familiar voice may be comforting.
• Tend to practical comfort needs. Keep the person’s lips moist and ensure that their sheets are clean and their bed is comfortable.

Caring for someone in the late stage of dementia can be painful and scary. Loved ones may wonder whether the person with dementia recognizes them, is in pain, or understands what is going on. They may have regrets or anxiety.

Providing loving comfort can be helpful. Caregivers can also seek support from hospice, medical advisors, and spiritual counselors if they desire.

While people with end stage dementia may not be able to express themselves, they still have emotions and need love and care. Developing a plan to prioritize these needs may make the process less painful for all involved.