Dementia end stage: what to expect

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Micha Shalev

By Micha Shalev

During the end stages of dementia, a person will gradually become dependent on others for all their care and activities of daily living. The body becomes very frail and weak. This information will help you think about what type of care and treatment you might want before you become unable to make decisions independently, as well as help family members and loved ones to think about these aspects.

How does dementia progress

Dementia is a progressive condition that to this day has no cure. For every individual, this disease progresses differently. It is hard to say exactly how dementia will progress or the life span of a person with this condition.

The progress of dementia is influenced by:

  • Age when dementia starts to develop;
  • Type of dementia;
  • General health; and
  • Other health issues and illnesses.

Symptoms

Each person’s experience with dementia is a unique one. The symptoms described here might not be totally accurate with your situation. However these symptoms are very likely to occur in the last stages of dementia.

-Memory loss

Memory is likely to be very severe in this stage. People may not recognize loved ones, familiar surroundings, and even their own reflection. There might be a delusion of being in the past. This might be a great opportunity to talk to them about this time period. Severe memory loss doesn’t mean that the personhood is lost. They still feel feelings and can appreciate things like music, touch and scent. It’s important to interact even if they can’t respond.

-Problems with communication

Problems will most likely arise with communication. Speech will be impaired and words will be forgotten. This doesn’t mean that body language won’t still be used ,so make sure it is something that is considered when providing care. People can still receive and return emotional signals even after the ability to speak is totally lost.

-Loss of mobility

Many people in the last stages of dementia will lose mobility. It starts off with a shuffle or unsteady walk. They become more clumsy and slow, bumping into things and dropping stuff.

Eventually this leads to being chair- or bed-bound. If there was a fall, stroke or arthritis in the past, it might speed up the decline.

-Weight loss

In the later stages of dementia people can either lose weight due to lack of appetite or gain weight from losing mobility, taking medications for depression, or behaviors that support weight gain. There might be a point where eating and drinking will become difficult, due to losing the swallowing reflex or chewing ability. That’s when blending food, special modified diets, and adding thickener to liquids will become a necessity. Otherwise food and fluid might end up in the lungs and will start an infection.

It is very important to encourage the person to eat and drink to get nutrients and water. Although it is vital for survival it may cause even more discomfort at the end of life stage when the person is mostly sleeping. Feeding and giving water when it is not safe to swallow will lead to asphyxiation.

-Continence

Incontinence is an inevitable symptom of dementia due to a number of reasons:

  • Urinary tract infection;
  • Side effects of medications;
  • Memory loss;
  • Prostate trouble; and
  • Not recognizing the need to go.

-Unusual behavior

In the later stages of dementia some people may act in an unusual or puzzling way in a certain time of day. This condition is called sundown syndrome. Here are some symptoms:

  • Acting aggressively toward others;
  • Saying the same words or phrase continuously;
  • Rocking back and forth;
  • Feelings of fear and confusion, not knowing where they are;
  • Hallucinations of smells, feelings, people, objects that are not there physically; and

-Immobility

Staying in a single position for too long can cause bed sores. This process is one of the most common and dangerous with people in the end stages of dementia. Caregivers should be cautious of the time frame when people are seated or laying down. Repositioning should be every two hours. That doesn’t mean that you shouldn’t reposition earlier because being in the same position that long will cause discomfort. Remember prevention is better than treatment so getting air mattresses and seat cushions can really help. You can find pressure sore prevention here.

-Medication side effects

Some of the medications that are prescribed for behavioral symptoms can have severe side effects. This can increase the confusion, aggression and drowsiness. Keeping the psychotic medications to a minimum is a good idea because it can increase the well-being of a person greatly. Be careful though. The goal is to find the golden ratio. Too much will keep them sedated when it’s not needed and too little will cause discomfort and uncontrollable symptoms like the ones above.

-Infections

Infections in the late stages of dementia can be a tricky thing. For example the temperature doesn’t rise for elderly people. There are other ways to notice an infection:

  • Sudden change in behavior;
  • Problems concentrating;
  • Hallucinations or delusions;
  • Acute sleepiness;
  • Bad smell; and
  • Flakes in the urine.

When death comes

The life expectancy of a person with dementia is usually unpredictable. Even though it is a life-shortening illness the cause of death may vary. One of the most common reasons is pneumonia or other infections. It is very likely that death can come from factors unrelated to dementia, such as a heart attack or blood clot.

Micha Shalev MHA CDP CDCM CADDCT, is the owner of The Oasis at Dodge Park, Dodge Park Rest Home and The Adult Day Club at Dodge Park located at 101 and 102 Randolph Road in Worcester. He is a graduate of the National Council of Certified Dementia Practitioners program, and well-known speaker covering Alzheimer’s and dementia training topics. He can be reached at 508-853-8180 or by email at m.shalev@dodgepark.com. View more information online at www.dodgepark.com.