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End-Stage Alzheimer's Dementia

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Overview and Symptoms of End-Stage Alzheimer's Disease

In the final stage of Alzheimer’s disease, the affected person will eventually lose the ability to:

  • Respond to their environment.  They will lose awareness of recent experiences as well as of their surroundings. 
  • Carry on a conversation.  They will have increasing difficulty communicating with words. Communicating pain becomes difficult.
  • Control movement.  In this regard, they will:
    • Require high levels of care, with full-time, around-the-clock assistance with daily personal care.
    • Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow. This decreased ability to swallow makes them vulnerable to pneumonia.
    • Need help with eating and toileting, and there is urinary incontinence almost all the time.
    • Lose the ability to walk without assistance. The affected person will then the lose ability to sit without support as well as smile and hold up their head. Muscles also become rigid and swallowing problems develop.

 

Caregiving at End of Life In Alzheimer's Dementia

During the late stages, your role as a caregiver focuses on preserving quality of life and dignity.

Difficulty with toileting

  • Walk the person to the bathroom if necessary, and guide them through the process.
  • Incontinence is common. To help minimize it:
    • Take them to the bathroom regularly on a schedule.  You could start with every 4 hours, for example, and make it more frequent as necessary. Taking them to empty their bladder and bowels even when they don’t complain of having to go can help keep them clean, comfortable and maintain dignity. If the person is not able to get to the toilet, use a bedside commode.
    • No fluids after 6 pm, except sips with any medications. This will decrease any nighttime urination. It’s also best to avoid any caffeine in the daytime, including coffee, tea, soda or drinking chocolate. Even drinking these items in the morning can lead to urinary incontinence at night.
    • Use incontinence products such as briefs or absorbent pads if necessary.
  • Constipation is common.  Diarrhea can sometimes occur as a result of constipation and overflow. Constipation may be a result of lack of mobility and exercise, inadequate fiber in their diet, or water. Other causes include medications and weak abdominal muscles. There is no need for a bowel movement every day, but if they go 3 days in a row without one, make sure they are drinking plenty of water a day, and try adding increasing fiber in their diet with fresh fruits, vegetables, prunes and bran.

Skin and Joint Health

In late-stage dementia, the person becomes more and more immobile, and may spend most or all of the time in a bed or chair. Keeping the skin healthy is important for their comfort, dignity and overall health.

  • Keep skin clean and dry. Inspect skin at least once a day, and bathe when needed for comfort or cleanliness. Be gentle and use mild cleanser, because their skin can tear or bruise easily. Cleanse skin as soon as it becomes soiled from urine or stool. Pat dry, rather than rubbing. Applying a moisturizer can also keep skin healthy.
  • Keep bed linens clean, dry, and without wrinkles. Special mattresses that contain foam, air, gel, or water are often used. Keep the head of the bed as low as possible (no more than 30 degrees) except when eating. Placing a pillow under the legs from mid-calf to ankle helps to keep heels off the bed.
  • Learn how to lift and reposition the person.
    • Changing position at least every two hours is very important. This way, the bony pressure points on the skin are continually changing. Use pillows to protect bony areas such as elbows and heels. Even if the person is on a hospital bed with an air-filled mattress, they still need to be repositioned regularly.
  • Learn how to move the person.  
    • Passive range of motion exercises can be done even in bed, and can help prevent the locking up of joints and improve bowel mobility. Maintaining joint range of motion is crucial and should be started as early as possible when a person’s mobility declines. Daily stretching can be very helpful. Each joint should be slowly moved to its full range of motion. Proper positioning in the bed and chair are also important. Before doing any such stretching or exercises, be sure to talk with your employer and make sure it is okay.

Pain and Illness

Communicating pain becomes difficult in the late stages. If you suspect pain, tell your employer as soon as possible, because the care recipient may need to go to the doctor. You may be the first one to identify the pain.

  • Pay attention to nonverbal signs. Gestures, spoken sounds, and facial expressions (wincing, for example) may signal pain or discomfort.
  • Watch for changes in behavior. Anxiety, agitation, shouting, and sleeping problems can all be signs of pain.

 

Care needs are very high at this stage. The care recipient’s family may decide that their care needs exceed what they can provide in the home, and may move the person to a nursing facility in order to get the required care. The family may also decide to start hospice care, which can be provided at home or in a nursing facility. Hospice care means that more nursing care can be provided at home, and that comfort care and dignity are priorities.

Picture of Madhuri Reddy

Madhuri Reddy

Dr. Reddy is a specialist in Internal Medicine & Geriatric Medicine, and holds appointments at Harvard Medical School & Hebrew SeniorLife in Boston, MA. For years she has seen first hand the struggles that families and caregivers go through while caring for older adults.

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