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
pleasant smells
pretty pictures
tasty foods
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.
If you are looking for help with a vulnerable loved one, look no further. When a nursing home told me, the only family member and newly minted POA for mother, that they thought a care manager would help I thought they didn’t know me well enough yet-I manage my own solo private practice and pride myself on caring for loved ones. I had NO IDEA what I was in for the past 2 years and Lionheart (Bianca in particular, a total saint and godsend) has been there with creative, compassionate, and kind solutions every step of the way. Bianca has found ways to help my mother and I that I didn’t even know existed. They are the BEST.
I highly recommend LionHeart Eldercare Consulting. They are a compassionate, caring group of consultants with a wealth of experience, advice, and resources. As the primary caregiver for a loved one with dementia, I often have contacted them for guidance, and they have responded quickly with exactly what I have needed. I cannot praise them enough.
I can’t say enough wonderful things about LionHeart. My husband’s Assisted Living could no longer serve his needs & they wanted him to leave ASAP. LionHeart had the expertise, compassion & wisdom to find the RIGHT place that more than fit his needs and level of care within budgetary constraints. He is very happy there & the care is outstanding. They were also very kind & caring to me. It was my lucky 🍀 day when Colleen of LionHeart was the first agency to return my call on a very bleak day.Thanks & More Thanks! 💗
LionHeart staff helped us identify a quality and caring assisted living community that fit our budget. My dad loves looking out his new bedroom window, watching people and dogs and cars.
During my husband's most recent, and most serious illness, the depth of knowledge of Colleen Duewel, Certified Eldercare Consultant of Lionheart Eldercare Consulting was a true blessing as I navigated the complicated territory of Long Term Health Care, care facilities, Medicare, legal matters - and so on. I highly recommend this company. The invaluable expertise and kindness of Colleen and staff comes at a time when we need it most.
LionHeart Eldercare has been a terrific help in planning for recovery from surgery. They helped me make a great plan for aftercare to help with physical recovery and household tasks. And found the right people/services to make it all work, giving me peace of mind. For their practical and understanding support, I highly recommend LionHeart.
Colleen has been very helpful during my early efforts to assist a friend with dementia . The initial and ongoing info she provided have allowed me to function on my friends behalf. I am sure I will be using more of LionHeart Eldercare's services as the disease progresses.
I highly recommend Colleen to anybody seeking sound, knowledgeable advice about elder care. I make that recommendation based on more than two decades of friendship and her invaluable help during my mother’s last years.In particular, I have Colleen to thank for finding a new home health care service that provided everything Mom needed and more for a much more reasonable amount of money.Colleen is invariably responsive, empathetic and kind.Now I’m working with Colleen to plan for my own final years.
Colleen provided tremendous help and insight when I had to deal with a sister in another city from where I lived. She helped me find the right resources and counseled me throughout a long an difficult situation that I would not been able to have navigated on my own. She compassionate, caring and extremely knowledgeable. I highly recommend her!
Colleen is an out-of-the-box thinker with a real compassion for older adults and their families. She is very knowledgeable about resources in our area and has the hands on experience to guide you through the overwhelming maze of working details. She loves challenges and is persistent in finding options and solutions that will work for your situation. Colleen has patiently listened to my sometimes stressed out ramblings about my elderly family member and was able to clearly identify important issues and offer a direction for finding solutions. I don't hesitate for a second to refer others to Colleen for her services.
Colleen has the experience, network and especially the heart to guide you or someone you love on the often-confusing journey through aging. I've always trusted completely that she would take excellent care of anyone I referred to her, and she's never let me down.
Colleen Duewel is perceptive, knowledgeable, and kind. After only one visit to talk about future living options, she wrote a series of useful recommendations for us. She included general observations about our personal situation and clear information to guide us in decision-making. We were able to decide on a Continuing Care Residential Community quite soon thereafter, and more than once we have called her for quick updates. I have always found her to be responsive and thoughtful. I have confidently referred several other people to Colleen at LionHeart.