Late stage of dementia

Signs and symptoms of late-stage dementia

The challenges of the middle stage become tasks that simply can no longer be accomplished independently. And new challenges will emerge. The late stage does blend into the final stage, but there is no timetable. For some people, the two stages last two years. For others, it’s a steep decline, and together it’s six months. It depends on the condition and other health factors.

Signs of the late stage include the following:

• Difficulty communicating verbally. Your loved one may understand some of what you say, although less and less as time goes on. They are not likely to be able to speak much themselves. If they speak at all, they may revert to words from the language of their childhood.
• Balance and gait are impaired. The person you care for will begin to need assistance walking. A cane or walker will be too confusing. They will need another person to lean on. They will be spending more and more time in a chair or in bed.
• Problems getting to the bathroom. Some of this has to do with the difficulty of walking. Some with loss of control of the bladder and bowel muscles.
• Difficulty chewing and swallowing. Your relative may choke easily. Or they may lose interest in eating. Finger food is preferred as forks and knives are too complicated.
• Long-term memory fades. They may be able to access events from their youth and childhood, but events in recent time (even recent decades) will no longer be available. Eventually they will lose long-term memory as well.
• Social interactions change. At this point, the person you care for will forget who people are. They may react positively to a smiling face and caring demeanor. But they are not likely to recognize you, for instance, as their daughter or son. They may react as if they are in their childhood or young adulthood. (Your dad may ask to see his mother. If you look like your father did in his youth, your mom might call you by your dad’s name.)
• Not oriented to time or place. People in the late stage do not understand seasons, days of the week, or even years. They also don’t understand things like what city, state, or country they live in. (They may think they are in their deep past. They aren’t likely to be able to update that information to current time.)

The experience of those in the late stage of dementia

One way to think about the stages of dementia is to imagine the advance as a rolling back of the clock in human development. In the early stage, we lose the learning of adulthood (planning, logic, judgment). In the middle stage, we lose the learning of adolescence (emotional regulation). The late stage is when the person you care for is losing the learning of childhood. Socializing. Bathing and getting dressed. Eating with a fork and knife. Using the toilet.

They still have their five senses and can be very much oriented around those. They can still experience joy. Look for activities they respond to well. Music from the past seems to inspire lots of feeling and engagement. It has been known to spark joy and excitement from even the most introverted, nonverbal people. It seems to be an avenue that cuts through the clogged pathways in the brain.

What memories they have appear to be in the far past. This leads us to assume that they are living there in many ways. Dad may mistake you for your mother because you look the way she does in his earlier memory of her. Your relative may ask for their own mother, or “to go home.” This often isn’t literal. It’s more about going back to the comfort and protection of their childhood.

Emotional outbursts or aggressive behaviors at this point tend to be a sign of pain. The person is not verbally able to tell you if they are in pain. Even if you ask directly, “Are you in pain,” they may not be able to answer accurately. If you notice an especially sudden change of temperament, look for signs of pain. Beyond the obvious (stone in a shoe, a pinch somewhere), a bladder infection or constipation are likely suspects.

The body is definitely winding down in the late stage of dementia, preparing for the final stage. Your relative’s world is getting smaller, not necessarily distressing. A routine with fewer demands on their energy and attention can be comforting. They prefer not to be overstimulated. It’s taking a lot just to be awake and aware and managing the basics of bodily functions. They intuitively understand their vulnerability and powerlessness. As a result, they benefit from ongoing rhythms that help them feel safe and loved.

How family caregivers can help someone in the late stage of dementia

Keep life simple and slow. No rushing. Reduce clutter in their room. Remove extraneous noise (TV in background). Daily routines are very comforting.

Help them experience the world through the five senses. Wherever you are with them—for instance, sitting outside in the morning—comment upon what you see, the warmth of the sun, any smells in the air, birds chirping. … Rely on the five senses to make each moment the most pleasant it can be.

• Music! Oddly, people in late-stage dementia can often sing along and remember words from favorite hymns or popular songs of their youth, even when they can’t necessarily speak words in regular conversation. Try different playlists, including favorite composers or musicians and songs from their childhood. See what piques their interest.
• Looking at old photos is often very comforting. The person you care for may or may not remember who is who in the pictures. But they do seem to like the activity and hearing tales about the people in the picture. (Resist the temptation to ask, “Do you remember?” That just puts pressure on them.) They will respond as much to the loving tone in your voice as to the images they see.
• A soft, fluffy blanket or a cuddly stuffed animal can be very reassuring. Even little gestures of affection come through well: Holding hands, stroking an arm, massaging the scalp.
• Lotions with a fragrant scent. Scented soap or shampoo can also be pleasing. But if they sneeze or have a history of sensitivities, skip this idea.
• Although the appetite is waning, favorite foods can sometimes be a hit. People in the late stage often develop a sweet tooth! Be careful if there are problems with diabetes or other metabolic conditions.

Be creative and accommodating. If you notice they like a grandchild’s doll or stuffed animal, get them one. It may remind them of a younger time and be very comforting. (Consider robot dogs and cats. They purr (or wag their tail) and even have a heartbeat. Many memory care communities have one for each resident because they are so popular. These communities also find their female residents enjoy carrying a baby doll with them. You can often see women sitting together with their dolls, appearing to communicate about their “babies.”)

Socializing. Your loved one may still enjoy visits from others, even though they can’t communicate verbally. Try to arrange for one-on-one time. Give visitors a sense of what to expect. (For instance, the person you care for may not recognize visitors, even if it’s their own grown children). Prompt visitors about the five senses and have soothing activities at the ready (comfort toy, book to read from, favorite music, lotion). Schedule visits at your relative’s best time of day, usually mornings when they are well rested. Keep visits with small children short and always with another adult present. The joyful noise and chaos of children may be a bit overwhelming.

Pay attention to changes in behavior. Sudden agitation, shouting, sleeping problems, or anxiety are often a sign of pain. Since your loved one can no longer talk to tell you they are in pain—or respond accurately even to a direct question—you will need to learn to read their nonverbal cues. In addition to these behaviors, they may express pain nonverbally with wincing, groaning, a grimaced face, or a furrowed brow. Pain can be as simple as a headache, shoes that are too tight, or a pin sticking in them. Or it could be a bladder infection, constipation, or something more serious. Talk to the doctor if you can’t find a cause and your normal soothing strategies don’t seem to work.

Hallucinations. In the late stage, people with dementia often see things the rest of us don’t. The images can be quite odd: Goats on the roof or little people on the bookshelf. If your relative is not distressed by the images, the best strategy is to let it be. Trying to convince them they aren’t seeing what they believe is there will simply lead them to distrust you. If they are distressed, say something validating like, “Goats on the roof. That’s a long way to jump.” Then change the subject and direct them out of the room to a different environment. “You know, I saw some doves on the patio. Let’s go check them out.”

Monitoring eating. In the late stage, appetite decreases. The person you care for doesn’t need a lot of food because they aren’t likely to be very active. Still, it’s a good idea to keep track of their weight. Finger food is preferable since coordination of a fork, knife, and spoon will become too difficult. If swallowing becomes a problem, they may end up with more of a liquid diet, such as smoothies and pureed soups. Talk with a dietician about best foods to help, given your loved one’s eating challenges. And if your relative is diabetic, talk with the doctor about adjustments to insulin or other diabetic medications, given the changes in eating habits.

Incontinence. With walking difficulties, you may find that a bedside commode is easier. Set a toileting schedule if you can. Be sure the person you care for is getting enough fluids and fiber to address constipation. (You’ll want to reduce fluids in the evening so they are less likely to get up at night or to wet the bed.) Eventually, they will need diapers and to use waterproof bed pads. Constipation is common and can be very uncomfortable. If three days have passed without a bowel movement, talk to the doctor about best options. You may also wish to consult a dietician for advice.

Bathing. The challenges of the middle stage continue. But now, with balance problems added, it’s easier and safer to give sponge baths instead. They are actually just as hygienic. Also consider “rinseless shampoo” for hair washing.

Skin care. Again, with the challenges of walking, your relative will likely be sitting a lot or eventually spending lots of time in bed. This can lead to bedsores (also called “pressure ulcers”). To reduce the chance of bedsores, shift your loved one’s position every two hours: Lying on their left side, lying on the right, sitting up in bed …. You also want to keep the skin clean and dry. Change clothing or sheets right away if there’ve gotten wet. Avoid scrubbing on the skin. It is far too thin at this stage. A light swipe and then blot dry. Use lotions afterwards to help with elasticity. Check daily for sores and rashes.

Getting up and moving around. Getting up and out of chairs or the bed will soon have to be an assisted task. You are very much at risk for injuring your own back. Ask a physical therapist to give you instruction on safe ways to help. Also, learn how to assist them with walking. You may need a “gait belt” or some other way to help steady them. You don’t want to grab their arms if they start to fall.

Protect against infections. Frequent infections are a sign of the final stage, but they start occurring sporadically in the late stage. The immune system is starting to close down. Here are some tips for prevention:

• Mouth care. Bacteria buildup in the mouth can travel down to the lungs and cause pneumonia. People in the late stage will sometimes store bits of food in their cheeks. Food particles like this are a source of infection. Try brushing after each meal and be sure to remove any remaining food. Remove and clean dentures each night. Also use a soft toothbrush on gums, tongue, and the interior of cheeks.
• Stay current on vaccines. Flu, pneumonia, and other respiratory infections are especially fatal to the elderly. Keep your loved one up to date with vaccines. You also want to stay current with your vaccines so you don’t inadvertently give your relative an infection.

Treatment decisions. You will be called upon to make treatment decisions during this stage, which can be challenging. There is no cure for the diseases that cause dementia. The person you care for will likely die from it or from some other disease that may be progressing faster, such as cancer, heart disease, or COPD. Unlike a person whose thinking is intact, your loved one won’t be able to understand that the pain or discomfort from treatment is going to lead to a potentially better or longer future. The future is too abstract a concept. All they have is now. Keep that in mind while making decisions.

If your relative prepared an advance directive earlier in the disease, consult that now for guidance.

Palliative care. Palliative medicine is not curative but focuses instead on palliation, the relief of suffering. Palliative doctors are experts in physical and emotional comfort. Palliative care is like hospice care but can be received without foregoing curative care for other conditions your relative may be facing. You may ultimately decide that hospice is the preferred option. Medicare lets your loved one receive more support from medical and nonmedical professionals. Plus, hospice is 100% provided by Medicare (no copayments). Hospice is only for those in the late and final stage, when the decision maker agrees that a “cure” is no longer a goal. There is an acceptance that the end of life is near. A care manager can help you decide whether hospice or palliative care is the best fit for your situation. (If palliative care is chosen, a care manager can advocate for insurance coverage since, unlike hospice, palliative care may not be a covered benefit.)

Consider a residential setting. Care needs at this stage can become more than you can do 24/7. A memory care community can provide staff who work as a team in rotating shifts. They are professionally trained to work with people who have dementia. They are caring, but they are not as emotionally affected by disease as you are. A care manager can help you decide if this is the best course. And if so, which is the best community in your area that fits your price range. They can also help coordinate with the facility to make the move as smooth as it can be. Ninety percent of families who have been providing dementia care for five years or more eventually decide that a memory care option is the wisest for everyone. Especially because your relative forgets who you are and is not particularly in touch with where they are, a move may be recommended for their benefit and for yours.

Self-care for family caregivers of persons in the late stage of dementia

Many family caregivers, especially spouses, shoulder the care of a loved one alone. By the late and final stages, the person you care for is very dependent, even bedbound. They likely don’t remember who you are. This can be heartbreaking. Dealing with feeding them, bathing them, diapers, and the inability to walk … frankly, it can get to be too much.

You may decide that a memory care community is a wiser option. The staff have training. They work as a team, in shifts. They aren’t as emotionally attached as you are. Plus, they can handle the physical side of things and let you just be a loving family member. A care manager can help you find a community that meets your family’s needs.

If you decide to keep your loved one at home, consider the following:

• Take breaks! You need time away from all the intense caregiving. It may seem impossible to arrange, but you do need some time away every day (fifteen minutes, thirty minutes, an hour, just to walk around the block or go to a different part of the house and do something unrelated to caregiving). It’s too much to shoulder responsibility for a very dependent adult twenty-four hours a day, seven days a week without at least a little interruption each day.
• Get help. Whether it’s other family members coming to spell you, a care manager to deal with doctors and the medical system, or hired help for heavy-lifting tasks like bathing, you need assistance. You don’t want to burn out and get sidelined. If you need help with finances, consider a consultation with a care manager. They can point you to lower cost programs, advise you regarding subsidies, or negotiate with any long-term care insurance your relative might have so you can get the services you need.
• Conflicting emotions are natural. You may find yourself feeling guilty because you would like this whole chapter to be over. Of course! It’s perfectly natural to want some relief for yourself, as well as for your relative. Furthermore, the person you care for actually may not have been very nice. Your history may involve a strained relationship. You may have lots of feelings that are not resolved. It’s very helpful to talk with a counselor or social worker who has experience with end-of-life issues and can help you process these very normal but distressing thoughts and feelings.
• Consider hospice. This is a free service provided by Medicare to help families in the final stage of life. (There are no copayments. It’s covered 100%.) Many people think hospice is just for the last few days before death. Not at all! Hospice can provide up to six months of support. They don’t provide 24/7 care. But they do offer services to help your loved one and you as a family caregiver. Talk to the doctor to find out if the person you care for is eligible for hospice.
  • A nurse to provide education about your relative’s condition, what to expect, how you can offset difficult symptoms. Often home visits by a nurse occur on a weekly basis.
  • A nurse’s aide to bathe and groom your relative two or three times a week.This is extremely helpful as it’s quite common for family caregivers to sustain a back injury trying to get their relative in and out of the shower.
  • A trained volunteer who can spend time with the person you care for so you can have a few hours away from the house once a week.
  • A social worker to suggest low-cost community programs if you are having financial difficulties. The social worker can also help with processing your own emotions.
  • A chaplain for support relating to more existential or spiritual questions. It can be very hard to watch a loved one decline through the years with dementia. It’s not uncommon to feel mad at God, to question why there is such suffering. A chaplain is usually part of a faith tradition but is trained to help people of all faiths, and no faiths, as they confront these larger issues.
  • Respite. Part of the hospice Medicare benefit can provide you with a few days off. Also, a volunteer once a week who can give you a few hours to yourself away from the home.
  • Bereavement support. At such time that the person you care for passes away, hospice has trained individuals who can help you process the wide range of emotions that come with the grief of a loss like this.

Be mindful of depression. The conditions that result in dementia usually last for a very long time. It gets depressing watching the person you care for drift away. Your own life can get very narrow and run down.

Depression is more than feeling sad and crying now and then. It tends to be a dissociation from the zest of life for two weeks or more. Things that you used to enjoy no longer interest you. You may lose initiative. You might experience sleep disturbances (too little or too much sleep). Or eating disturbances (inability to eat, or overeating). Your own thinking may get fuzzy or confused. Problem solving can become difficult. Or you may experience headaches or stomachaches with no identifiable cause. If any of these symptoms apply, talk with a doctor. Between 40% and 60% of family caregivers struggle with depression. You can’t change your relative’s diagnosis, but you can seek treatment for your own mental health. Life doesn’t have to be this hard.