End Stage Dementia The Last of the Three Stages of Dementia

The end stage of dementia is a difficult and challenging time for caregivers and their loved ones. In this blog post, we discuss the symptoms and changes that may occur during this stage, as well as the role of caregivers and the importance of end of life planning.

The end stage of dementia is probably the most difficult of all of the three stages of dementia. This is the stage, when the care can become even more overwhelming.

By now, many caregivers are worn out and exhausted. This is the stage that many decide placement for the individual that they have been providing care. Quality of care, in individuals with end stage dementia, is probably the most important factor to a family member when deciding where these individuals should receive care.

If you are a family member that wants to maintain the person you are caring for at home, realize that the care will be more physically demanding than before. This commitment will require help from others; you may even consider non medical home health care or hospice or palliative care.

This is the stage when the brain has deteriorated and now the cognitive functions of the individual become almost non existent. This deterioration begins to affect other areas of the body and their functions. The physical body is now beginning to fail. Below are signs of dementia that may be exhibited. Remember, that based on the type of dementia will determine which of these signs and symptoms you will see.

Mental Changes During End Stage Dementia

  • Memory is severely impaired. Both short term and long term memory is lost.
  • Unlikely to understand or comprehend what others are saying.
  • Does not recognize familiar faces or even themselves in a mirror.
  • Unable to verbalize needs or thoughts. Speech may be garbled or non existent.

Personality Changes

  • Unable to smile or show enjoyment
  • May have unexplained periods of crying, sobbing or moaning
  • Startles easily

Behavior Problems

  • May sleep more or require medication to assist with sleep.
  • Appetite is poor. May start to have difficulty with swallowing or forget how to swallow. Maintaining weight is very difficult.
  • May respond to touch with cries or moans.
  • May grab onto something and not let go.


Changes in Abilities to Function During End Stage Dementia

  • Becomes totally dependant of care from others.
  • Balance and coordination become difficult. Becomes wheelchair or bed bound.
  • May be at risk for seizures.
  • Becomes incontinent of bowel and bladder.
  • Muscles become rigid and stiff.
  • Due to poor nutritional status and little to no ambulation, becomes prone to developing pneumonia, urinary tract infections, dehydration and pressure sores and skin tears.


Caregiver’s Role

  • Care will require total assistance of bathing, dressing, feeding, skin care and incontinence care.
  • Because skin is fragile, it is important to have assistance when moving or transferring from bed to chair.
  • Gently approach when entering the room to provide care. Even if you have been caring for this person for a long time, tell them who you are.
  • Be diligent about checking the skin, making sure to lotion the buttocks, heels and elbows.
  • Mouth care is very important as well. Chapstick on the lips to keep them from drying out.
  • Allow rest periods and naps.
  • Try to encourage fluids and eating. It is important to note that aspiration pneumonia is common, because of the swallowing difficulties. Ask for a Seech evaluation to teach you how to feed to decrease the chances of developing aspiration pneumonia.
  • Monitor the body for signs of infection. These may be flushed cheeks, running a fever, foul smelling urine. Be sure to ask the doctor what to look for as well.
  • Do not hesitate to ask for more help or assistance when needed.


If your goal is to maintain the individual at home, it is still wise to be open to moving to a facility if the job of dealing with end stage dementia becomes too much. There is always respite care as well.

Preplanning Funeral Arrangements for End of Life Planning

I hope that I have presented you with enough information to make educated decisions about future care.