Understanding Severe Dementia

Dementia is a term for any progressive cognitive decline caused by a disease like Alzheimer’s disease or Huntington’s disease. This cognitive decline often begins mildly and with limited symptoms. As symptoms progress, they may worsen and cause more functional challenges for the individual. 

Severe dementia is often the final stage of dementia, causing significant functional difficulty, physical and mental changes, and, ultimately, death. Understanding severe dementia can lead to understanding how to provide caregiving, when to seek professional support, and how to plan end-of-life care. 

What is severe dementia? 

Severe dementia refers to the final stage of dementia, which may last from weeks to years. Throughout the stages of dementia, symptoms tend to correspond with disease progression. As a person's dementia progresses, their response to their environment becomes more sensory-based, as they may lose their ability to function without assistance and communicate their needs. 

In this stage, personality changes and a decline in cognitive skills and physical ability tend to occur. Additionally, a person may lose their sense of awareness of surroundings and experiences and have difficulty controlling movements. In this stage, one may benefit from more extensive care. Advance care planning may be helpful in this stage when caring for people with dementia. Planning can take place while the person still possesses the ability to make decisions related to their long-term care. 

What are the types of dementia? 

There are many different kinds of dementia—categorized concerning their underlying cause—including but not limited to Alzheimer's disease, Lewy body disease, and Huntington's disease. 

The National Institute on Aging defines dementia as the "loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person's daily life and activities." Often, dementia affects memory and at least one other cognitive function, such as executive function. 

Some people with dementia may find it challenging to control their emotions, and personality changes may also become apparent, especially as the disease progresses.

Dementia symptoms

The symptoms of dementia may change as the person's condition declines. However, general dementia symptoms include: 

• Memory loss, confusion, disorientation, and impaired judgment 
• Challenges with understanding and expressing ideas, whether verbally or through reading and writing
• A sense of disorientation, such as getting lost in familiar places
• The tendency to ask the same questions multiple times
• A loss of interest in activities 
• A disregard for the feelings of others 
• Challenges with controlling movements

Alzheimer's disease, which is considered the most common type of dementia among older adults, is linked with changes in the brain, such as abnormal buildups of protein. Recent biomarker studies suggest that the continuum of Alzheimer’s disease includes a long phase of preclinical Alzheimer's disease in which symptoms are absent. Researchers indicate that treatment during this phase may offer "an optimal opportunity for slowing disease progression." However, treatment options are still being studied. 

What is mild cognitive impairment (MCI)? 

Mild cognitive impairment (MCI) refers to an early stage of cognitive ability loss, such as memory loss or language ability. While these cognitive changes are often noticeable, they do not affect a person's ability to function independently. Some people who have MCI go on to develop dementia, while others do not, finding that MCI subsides to normal cognition levels. 

One might not develop dementia when MCI is associated with drug treatment. However, in the case of neurodegenerative diseases like the different kinds of dementia, "MCI can be an early stage of the disease continuum including for Alzheimer's if the hallmark changes in the brain are present." Those experiencing cognitive changes are advised to seek guidance from a health professional to evaluate their underlying causes and receive treatment if required.  

The stages of Alzheimer's disease

Alzheimer's disease symptoms tend to have a progressive nature. As the condition progresses, symptoms may worsen, and the manifestation of new symptoms may vary according to each stage. Symptoms may overlap in different stages. The rate at which the disease progresses can also vary, and a person can live for many years or decades after the initial diagnosis, according to the Alzheimer's Association. 

Mild Alzheimer’s disease 

Mild Alzheimer’s disease may be considered the early stage of Alzheimer's disease. During this stage, a person may experience symptoms such as forgetfulness and difficulty remembering a person's name or where they put an object. However, they may still be able to function independently. Additional symptoms may include difficulty performing tasks, forgetting a story they have just read, losing or misplacing objects, and challenges with planning and organizing. 

Moderate Alzheimer’s disease 

Moderate Alzheimer’s disease may be related to its middle stage, which tends to be the longest. In this stage, a person may experience more challenges with daily functioning, such as bathing, going out, and articulating thoughts, which may be frustrating for the person. Behavior changes may become more pronounced as a person may act in unexpected ways. 

At this stage, an individual may find it more challenging to express thoughts and perform daily tasks due to damage to their nerve cells. Additional symptoms may include feeling moody or withdrawing in social situations, forgetting information about themselves, such as their address and phone number, difficulty controlling their bladder and bowel movements, disorientation, and a tendency to get lost. 

This stage may offer a moment for the person's wishes to be expressed for their subsequent long-term care. At this stage, a caretaker may be able to jointly make legal, financial, and other decisions with the person that directly affects them. Findings also suggest that "advance care planning is a cornerstone of the care of patients with advanced dementia." 

Severe Alzheimer’s disease 

Severe Alzheimer’s disease may be referred to as the stage in which memory and cognitive skills continue to decline, impairing a person's ability to function. During this stage, symptoms may become severe as a person may lose their ability to walk, sit, talk, and respond to their environment. While they may still be able to express themselves with phrases, communicating needs can become more challenging. 

In the severe stage, a person may no longer be able to control their movements, and others may notice marked personality changes. At this stage, engagement with others and the environment may be made mostly through the senses, such as eating a favorite food or listening to music. 

Symptoms associated with this stage may include:

• Vulnerability to infections
• Lack of awareness of recent experiences and surroundings
• Changes in physical abilities, such as talking, chewing, and swallowing
• Difficulty articulating needs
• Needing assistance walking or losing the ability to walk

Some people may require extensive care, and caretakers may benefit from enlisting support services such as hospice care. 

Late-stage care

When a person reaches the stage of advanced dementia, some families may find it increasingly challenging to take care of the needs of their loved one without support. Care may also exceed what can be provided at home. 

Hospice care, for example, may be another option as it may offer support services and care. Hospice’s guiding principles are to foster quality of life, manage symptoms, and provide holistic person-centered care. Services may also be available under Medicare. However, to qualify, a physician may be required to diagnose the person as having less than six months to live. 

Therapy for caretakers

Therapy may reduce symptoms of stress, anxiety, and depression, which are known to affect caretakers. However, it can be difficult for those who face barriers to in-person appointments, such as difficulty finding the time or financial blocks. In these cases, online therapy through a platform like BetterHelp may be more convenient and accessible. 

Online therapy platforms allow clients to connect with a licensed therapist by videoconferencing, phone, or in-app messages. This option may be helpful if one wants their therapist to help them navigate a recent challenge without having to wait long for a response. In addition, online platforms utilize other resources like journaling prompts, worksheets, and support groups. 

A recent study examined the effectiveness of telephone-supported online cognitive-behavioral therapy (CBT). The study, which analyzed data from 176 caregivers of people with dementia, suggests "preliminary evidence for adopting telephone-supported online CBT."