Late stage of dementia

Common symptoms of late dementia

Below are some common signs of late stage dementia. (Most people at this stage show at least some of these symptoms.)*

Memory and thinking skills

• Mixes up recent and past events
• Doesn’t remember friends and relatives
• Unable to follow a two-step command

Communication

• Cannot carry on a meaningful conversation
• Speaks in phrases. Words and sentences are often disconnected.

Behavior and mood

• May not be able to recognize pain or hunger or the need to go to the bathroom
• May express unmet needs by yelling/calling out
• Difficulty engaging in activities

Daily self-care

• Unable to live independently. Cannot dress, bathe, or use the toilet without assistance.
• Unable to control bowel and bladder
• Problems with balance and coordination
• Sleeps often

* Signs and stages adapted from a publication of the Alzheimer’s Association – Greater Illinois Chapter.

Common issues, tips and concerns

• Music as a universal language. If the person you care for seems to have retreated into their own world, try a little music as a way to connect. Tunes from their youth will often bring a smile. Favorite hymns may even get someone singing who has not talked in quite a while. Try not to over-stimulate. Soothing music is best for starters. If that seems to be well-received, then you can build up to more rousing melodies. You may even be able to get your loved one up and swaying to the music for a little movement and body connection.
• Emotional outbursts. Loud noises, cursing, refusing to cooperate, and even aggressive behaviors are usually a sign of pain or distress. It can be physical pain or emotional pain. Persons in the late stage of dementia usually cannot tell you what they are feeling. Look for nonverbal signs of physical pain, such as groaning, a furrowed brow, rapid breathing, or grabbing or clutching a part of the body. If there is no obvious physical problem, it may be something internal, such as a bladder infection. It’s wise to check with the doctor if outbursts are a problem. There may be a medical condition at the root of it. Or the source of the problem may be in the environment.
• Look for triggers. Usually there is a purpose behind distressed behavior. Think about what was happening just before your relative did something strange or difficult. Was there pressure to get something done in a hurry? Did you ask him or her to do something that was perhaps too complicated, had too many steps? Or think about what need your family member might be trying to fulfill. For instance, wandering or restlessness may reflect a need for physical exercise. Anger or agitation may be a response to feeling out of control of a situation.
• Use distraction techniques. One advantage of forgetfulness is that you can use the short attention span to distract your relative from a triggering situation. Perhaps there is a distressing program on the television. Maybe he or she was frightened by a noise or a picture. You can either remove the distressing object or suggest another activity and then take your family member to a different room to complete it. Distraction works best if you acknowledge your relative’s feelings first and establish a loving, nonverbal connection. Hold his or her hand, touch a shoulder reassuringly, and make eye contact. Then you might say something like, “I can see you’re upset. I would be too. Let’s go outside and check on the bird feeder.”
• Accommodate their preferences. It’s easier to let your relative do what feels natural to them than it is to try to force them to do things differently. If carrying a baby doll gives purpose and a sense of meaning and comfort, then let the doll be part of the family. Your creativity and flexible responses can do much to generate an environment that feels safe and loving to a person who is confused and potentially scared much of the time.
• Find “useful” activities. Even people with very clouded thinking like to participate and feel like they are helping. Folding towels, sanding wood, sorting coins, stringing beads, or sweeping the walkway…these are all familiar activities that can be comforting and very absorbing for a person with dementia. Plus time spent on these safe activities gives you a break. (Hint: The activity does not have to be literally useful. You can take the hamper full of folded towels to another room, and jumble them up again. Then come back and ask if your relative can help you by folding this load of laundry.)
• Use short sentences and show rather than tell. As language capabilities diminish, your loved one can get easily confused. If you want your relative to do something, break it down into simple steps. Or better yet, show your relative what to do, one step at a time.
• Wandering. Your relative may exhibit restless behavior. This can include walking aimlessly for hours. Or he or she may continually talk about needing to get home. Your family member may be searching for something and be unable to say what it is. Putting up signs for the toilet, the kitchen, and the closet can help your loved one stay oriented. Getting regular exercise can burn off extra physical energy. If you are worried about safety, something as simple as a “stop” sign on the door or a yellow ribbon across it can keep your relative inside. Plastic “child-safe” doorknob protectors can be useful, as can a home security system if you are worried about nighttime wandering outdoors. Many people with memory problems have trouble spatially. Sometimes a black mat placed in front of the door will be mistaken as a large hole and dissuade a person with dementia from crossing over it.
• Following you from place to place. This is often called “shadowing” and it can be very unnerving. As your family member becomes less capable, he or she will want to stay beside you. Your presence provides a sense of safety and security. Providing verbal and nonverbal comfort and reassurance can help. Also, distracting your relative with an engaging activity can give you some moments alone.
• Mealtime problems. Although your relative may still have an appetite, he or she may have trouble with the mechanics of eating. Using a fork or knife becomes too complicated. It may be better at this stage to change to finger foods. And a “tippy cup” or one with a built-in straw may be easier than a regular glass or cup for fluids.