Stages of Dementia Part Three: Severe

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In this series we’ve discussed the mild and moderate stages of dementia. This section of the Stages of Dementia series, we’ll move onto the severe stage of dementia – where your loved one stands in this stage, what’s to come, and what is required of you as a caregiver. 

Once your loved one has either been diagnosed or has declined to the severe stages of dementia, this is a crucial time for you to know what you are capable of as a caregiver.

Caring for my mom during this stage was at times, the most frustrating of all the stages. I never saw it coming!

In my book, Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide, I talk about the slow decline, the plateaus, and just when I thought I had figured out a normal routine – BOOM – a sudden, steep decline happened.

Nothing can totally prepare you for the severe stage of dementia. In spite of your best attempts to slow or stop this disorder, once a person arrives at the severe stage there is no turning back. The reality of dementia can no longer be ignored.

What does the severe stage entail?

In this stage, people suffering from dementia will no longer be able to recognize themselves – the person who they see in the mirror is a stranger. Caregivers will lose their role of spouse, child or family member and now become their “friend.”

Not being able to recognize or understand their surroundings can lead to hallucinations and delusions along with anxiety and paranoia. For many, wandering is due to wanting to return to the safety of home. Not the home they are currently in – a home from their past. And there is no longer a meaning or purpose for food, bathing, toileting or sleeping.

During this stage of dementia, a person with memory loss can typically develop sleep disorders. They either sleep too little or too much. When a person sleeps too little, it will cause increased agitation, anxiety and challenging behaviors. Too much sleep will interfere with the circadian rhythm and the sleep cycle will be thrown off.

One of the major causes of physical and emotional complications is lack of hydration. 

Mobility issues increase for the person in the severe stage of dementia. Since their brain has difficulty sending or receiving messages properly, simple learned behaviors such as walking, sitting, and standing become problematic.

What should caregivers expect?

In the severe stage of dementia the person who you are caring for will no longer be able to be live alone or be left alone. As mentioned above, during this stage, most people will have:

  1. Severe memory loss

  2. Disorientation
  3. Wandering
  4. Sleep disorders
  5. Loss of mobility

  6. Less able to verbally communicate
  7. Weight loss or gain
  8. Fall risk

  9. Incontinence

  10. Challenging behaviors

Every thing that we do is learned. When a person has dementia, what was once learned becomes unlearned. Many of the challenging behaviors listed above are due to severe memory loss.

Unfortunately as a caregiver our sleep cycle revolves around the person we are caring for. And our sleep deprivation can increase stress, affecting our physical and emotional wellbeing.

As discussed in the Stages of Dementia Parts One and Two, the MMSE is a test often used to determine someone’s stage of dementia. This is a 30-question examination composed of questions regarding time and place, recall, reading, comprehension, math and visual spatial. The amount of questions answered correctly determines the MMSE score.

The MMSE score of severe dementia is 10-1. In some cases, dementia sufferers may no longer be able to answer most or any of the 30 questions of the MMSE. Others may have a high cognitive reserve allowing them to score in the moderate level of this test, when in reality they are in the severe stage. It’s important to focus on the things that your loved one is capable of doing. The MMSE test is not a complete diagnosis – just a guide.

How long will the severe stage last?

Since everyone is different, this stage can vary in length. The severe stage can last anywhere from 1-10 years, but it’s important to remain focused on your loved one’s particular situation and avoid getting to wrapped up in the facts. Dementia will always vary from person to person and no case is ever the same. 

Photo courtesy of Vince Alongi

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