At this stage, people with dementia are emotionally perceptive, but very inwardly focused. Family members are no longer recognized. Or they are mistaken for friends or family known in earlier years. Confusing the present with the past is common. Yet they are still aware of physical sensations and are sensitive to the current environment.
An emphasis on comfort and calm
The emphasis of this stage, and in the final stage, is to keep the person you care for feeling loved, known, and safe. That starts with addressing the senses.
People in the late stage of dementia tend to be very aware of all their senses, so they find enjoyment in
happy or soothing music
clothing or objects that are soft to the touch
affection and gentle massage
In this stage 24/7 assistance is required.
Instinct is a primary driver A person with late stage dementia no longer has control over his or her environment. But he or she will be very perceptive emotionally. If you exude love and show caring with your body, face, and tone of voice, the person you care for will likely respond in kind. When he or she becomes anxious about something, even if it seems ridiculous, show concern. You need to demonstrate that you are trustworthy, that you are an ally. If the person you care for becomes anxious, you can often distract him or her away from the cause of concern and substitute a positive, engaging activity.
Communication is non-verbal Communication is severely impaired in the late stage. The person with dementia will have difficulty understanding what others are saying. He or she will likely talk less and less. What’s said may sound like nonsense. But listen for possible symbolic meaning. “I’ve been robbed” is a poetically accurate depiction of memory loss. “I want to go home” is often not so much about location as a longing for the sense of comfort that “home” represents. Studies have been done during which elders with dementia free associate, draw, and dictate their thoughts. They can be surprisingly insightful.
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.
When my client's family needed assistance navigating the path of dementia, I recommended the Ferretto Consulting Group. We have been working with Jessica Young now for many months and could not be happier. She helped with understanding the needs of a dementia client and assisted the family in making sure those needs were met. Her responsiveness is immediate and her follow-through is on time and on target. Thank you Jessica for providing the stability needed for my clients to feel secure in their decisions concerning their loved one.